Wednesday, October 22, 2014
Just Diagnosed with Cancer? Chat with Experts

Wednesday, October 27, 2010 msfoti, Community Member, asks

Q: Is it possible my calcifications are not malignant, even if my mother's breast cancer was diagnosed after calcifications were found on a routine mammogram?

My mother has had breast cancer twice - two separate types - once in each breast. She has been successfully treated and is doing well, but there is a very strong history of breast/ovarian cancer in our family. Because of that history, she was tested and is negative for the BRAC genes. She was on hormone replacement therapy for over 20 years. I am 41 and recently had a routine mammogram (have had them every year since age 35) and it showed a very tiny, "worm-like" cluster of calcifications - in the upper right quadrant of my right breast - but there is no palpable lump. My last mammogram, a year ago, was clear and my last manual exam by my ob/gym was 2 months ago and she felt nothing. My mother's cancer was first diagnosed with a routine mammogram which showed microcalcifications. Is it possible mine are benign, even though my family history is so strong? Because of my family history, the radiologist told me he would normally wait and re-mammogram in 3 -6 months but he doesn't want to wait in my case and I'm scheduled for a biopsy on Tuesday. Any assurance you could give would be most appreciated. I am 30 years younger than my mother and was hoping I wouldn't have to deal with this for a very long time.
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Answers (1)
PJ Hamel, Health Guide
10/28/10 6:02am

Hi - It's good you're being proactive about your health, given your family history of breast cancer. Microcalcifications in and of themselves aren't cancerous; but they can be a "shadow" of cancer, signalling its presence or its future development in that spot. And while most microcalcifications turn out to be no problem, when they present themselves in a  cluster or pattern, rather than scattered, there's a greater likelihood of cancer being involved.

 

I think your doctor is doing the right thing, given your increased risk. You need to be extra careful. That said, about 85% of all breast biopsies are negative - so statistically speaking, the odds are on your side. I know this is scary for you; and in the end, there's a chance that this will turn out to be cancer. But think about it - since you've seen no sign of cancer at all, and can feel no lump, and mammograms have shown no lump, if it IS cancer it's undoubtedly extremely early, and thus very, very treatable.

 

Best of luck to you. And come on back, if you need to - we can help. PJH

Reply
msfoti, Community Member
11/15/10 10:23pm

Thanks for your prompt reply. My biopsy results came back just over a week ago and the calcification sample was indeed malignant. As panicked as I was to hear this initially, however, the diagnosis was "good" - DCIS - stage 0. That was a big relief. I am scheduled for a lumpectomy on Nov. 24 and after the surgery site has healed I will begin 6 - 7 weeks of radiation therapy. 

 

My surgeon said that despite my family history (mom having breast cancer twice in two separate breasts over two years) there is no medical need for a mastectomy or double mastectomy at this point. The cancer is contained in a VERY tiny part of my right breast (not in multiple sites) and my prognosis is already incredibly good - DCIS, with treatment, has an over 99% survival rate. She says that a double mastectomy, which initially I wanted because I was so paranoid about getting breast cancer again, will not improve these odds and it is a serious operation that should not be considered only out of fear - because nothing is 100%. Do you agree with this? I am relieved, to be honest. I do not want a double mastectomy if it is not necessary. 

 

Also, she (surgeon) says that since my mom tested negative for the BRAC gene(s), and there is no history of breast or ovarian cancer (that I know of) on my dad's side of the family, then I can't be BRAC+ either. I don't know enough about genetics to answer this, of course. If I were BRAC+, she would definitely consider me to be a good candidate for a double mastectomy and removal of my ovaries soon thereafter.  

 

I have learned an incredible amount about breast cancer, especially DCIS, over these past two weeks. I never knew there was a stage 0 cancer! I am very lucky to have caught this so early. 

 

Thanks for your help - 

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PJ Hamel, Health Guide
11/15/10 10:44pm

Sounds like you have a very wise surgeon, giving you excellent advice. I agree 100%. I don't know enough about the BRCA genes to understand completely how the genetics work, but I do believe that if your mom is negative, it would be really hard (impossible?) for you to be positive.

 

Sounds to me like you havea very minor, very curable breast cancer; some oncologists don't consider stage 0 cancer, but rather a pre-cancer. And I agree about the mastectomy/double mastectomy - seems like much too aggressive a treatment for your diagnosis. You might find my post on choosing a double mastectomy interesting reading...

 

Best of luck as you go through this. Soundsl ike you have a great attitude - hold onto it! And come back and visit, OK? I'd like to know how you're doing. Take care- PJH

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msfoti, Community Member
11/18/10 9:57pm

Sorry if this is a "repeat post" - I tried to reply to your message yesterday, but somehow I don't think it went through - whatever. I think I forgot to click on "Post Reply!" Duh. Anyway, I did read your post on choosing a double mastectomy - and it was outstanding - I forwarded it to my entire immediate family! It has been interesting and frustrating dealing with my family and friends' reaction to my diagnosis - and sometimes I'm frustrated with my own reaction to it. Sometimes I'm fine, feeling grateful, fortunate to have such a good prognosis - then other times I'm angry, feeling as if I've been "dealt" a very lousy set of "gene cards." But overall, I'm feeling better every day about the whole thing and looking forward to getting my lumpectomy over with (surgery is scheduled for Nov. 24). 

 

Anyway, enough of all of that. I do have a specific question about DCIS. Am I correct in understanding that DCIS CANNOT metasisize (I spelled that wrong, I'm sure)? I do understand DCIS can become invasive breast cancer at some point, but nobody knows why, when or which women this will happen to - which is why all cases of DCIS must be treated with surgery and radiation (if lumpectomy is chosen). I don't care if I have a disfigured breast due to the surgery, I just want to know that DCIS won't - or can't - spread throughout my body. I do understand that I am still at risk for another type or occurrence of breast cancer in the future, of course - but I'm talking about this particular event right now. Does that question make sense? Thanks for your help. Your posts have really helped me a great deal and I am most grateful. 

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Phyllis Johnson, Health Guide
11/19/10 5:21am

As long as the cancer has stayed in its original site (in situ), you don't have to worry that it has traveled somewhere else.  Once the surgery shows that your surgery achieved clear margins, you should be good to go.  If you didn't have the surgery, the cancer would probably continue to grow and eventually would become invasive, at which time there would be the possibility that some cells could travel to a distant organ and set up housekeeping.

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PJ Hamel, Health Guide
11/19/10 6:04am

Phyllis is right - DCIS can't metastasize. As you say, it can change and become invasive, but then it's no longer DCIS; DCIS by definition can't be invasive. Interestingly, they estimate that 40% or so of DCIS will never do anything; it'll just disappear on its own, without treatment. Problem is, who among us wants to take the chance we're in that 40%, right? Undecided

 

And you don't have to have a disfigured breast; if the cosmetic result of lumpectomy is going to be something you don't like, you can definitely have a small reconstruction of the tumor site. Be sure to ask about this possibility, OK? It's not being "vain" or anything else; if you can have a normal-looking breast, and insurance covers it - well, why not?

 

Thanks for staying connected here - come back with more questions whenever they occur to you... Take care- PJH

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msfoti, Community Member
12/ 1/10 7:22pm

Well I had my lumpectomy last week, and pathology report came back - unfortunately the margins were not clear and what they did remove within the lumpectomy included a 1 cm mass that was invasive ductal carcinoma - and the margins showed both DCIS and invasive cells. All of the malignant cells were "triple hormone positive." (This was a relief to me, believe it or not, because my mother's cancer was triple negative, which is more difficult to treat from my understanding.) 

 

My surgeon told me although this wasn't great news, the treatment is no different at this point - I need to have the same procedure (she called it an "excision") again within the next few weeks to make sure we get clear margins. She still does not think a mastectomy will be necessary at this point. Chemo is still undetermined until the lymph nodes are biopsied, which will be done at the next surgery.

 

Now I'm even more confused and scared. My surgeon did tell me before my first procedure that this was a possibility (meaning another surgery if margins weren't clear).  She explained that there is still DCIS present in the same area, and that some of it became invasive - but the biopsy only takes a small amount, and that is what showed only DCIS and not invasive cells. But now that there is invasive cancer, I'm scared it's everywhere, and I'm finished. Please tell me this isn't true (she assured me it wasn't but now I don't know what to think).  

 

Also, why would a 1 cm mass not show up on a mammogram? Only the calcifications did. There was no palpable mass at any point. Why does she still think a mastectomy isn't necessary? Sorry for all the questions but I'm overloaded with info. and am really confused. I have an appt. w/ my surgeon on Friday to review the pathology report in greater detail, but I had just come to terms with the DCIS diagnosis, and now it's something in addition to that. 

 

Any advice you could give would be most appreciated. 

Reply
PJ Hamel, Health Guide
12/ 1/10 9:22pm

Hi again - I'm sorry you didn't get clear margins, and instead, they found an invasive tumor. But you're NOT finished! Literally millions of us get this kind of diagnosis, and go on to do just fine.

 

Why didn't you feel the lump? My 2cm lump was never felt, and just barely showed on a mammogram; they thought it was a couple of millimeters and found it was way bigger when they did surgery.

 

Lumps can "hide;" mammograms aren't 100% effective. So I'm glad they found this and removed it. If she thinks the next surgery will yield clear margins, I say let your surgeon go for it. It's up to you whether to have a mastectomy immediately, but you can always have one after the next surgery, if it fails to give you clear margins - so why not risk that?

 

As you say, positive for hormone receptivity is actually good news, as it means drugs will be effective in preventing a recurrence. So, you can be happy about that.

 

The next important step is the lymph node surgery. If it's not in your nodes, most likely it hasn't spread, and there's a chance you won't need chemo.

 

If you have a copy of your pathology report, you might want to review our guide to understanding your pathology report; it might help you formulate some questions to ask at your appointment on Friday.

 

Best of luck to you as you go forward with treatment- PJH

 

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Phyllis Johnson, Health Guide
11/16/10 5:58am

So far only two specific genes for cancer have been identified, but there are probably more that haven't been found because there are many families like yours that have many breast cancer cases but don't have the BRCA 1 or 2 gene.  I agree with your doctor's recommendation not to have a double mastectomy.  First of all your mother had hormone replacement therapy, which was probably a factor in her cancer.  That's not to say that there might not be some sort of genetic component as well, but the HRT could have made a tendency worse.  You have the benefit of knowing not to take HRT.  Second, mastectomy cannot completely prevent breast cancer.  There is always a little breast tissue left.  So you would be having major surgery that would reduce your breast cancer risk, but couldn't totally eliminate it.  You would still have a niggle of worry and the hassle of frequent follow-up visits with the doctor.  Why not just keep your breasts?  If something does happen again, you will find it early just like this time.

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msfoti, Community Member
11/18/10 2:50pm

Thanks Phyllis. It's amazing how many women think that taking off both breasts will immediately solve this problem. I was one of them, until this happened to me. DCIS is actually a "great" diagnosis, now that I know more about it. I didn't know what in the world I was up against. Thanks for your advice & support.

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Phyllis Johnson, Health Guide
11/18/10 6:56pm

Glad to help.  Let us know when you have other questions.

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msfoti, Community Member
12/ 3/10 10:58pm

Another question: met with my surgeon today to discuss 2nd "excision" procedure. We scheduled my second surgery for Dec. 16. I was grateful she was able to do schedule this so quickly, because I have to heal a bit since my last surgery was just over a week ago. Anyway, my mind is still racing and I'm a nervous wreck. I realize that's not good, but I can't help it and I need to process all of this.  I asked her, "how do you know there's nothing else in my breast? If the margins weren't clear, couldn't it be everywhere in there? How do you know I don't need a mastectomy?" After some thought, she called me later after the appointment and scheduled me to have an MRI of both breasts - because the 1 cm IDC mass didn't show up on the mammogram, and neither did the DCIS (the microcalcifications were the only sign of an abnormality). She said the MRI will give us a better picture of both breasts, help her determine if a lumpectomy is sufficient, and it will give us both peace of mind that I made the right decision (mastectomy vs. lumpectomy). 

 

Here are my questions: please calm me down here - what are the chances of having a malignancy in two breasts at once? I'm not sure I can handle that right now. What are the chances of another invasive malignancy hiding elsewhere in there? Does DCIS usually stay localized, or can it be "sprinkled" throughout? 

 

 

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Phyllis Johnson, Health Guide
12/ 4/10 6:58am

I don't know exact percentages for cancer in both breasts.  It is unusual, but not impossible.  There is one type of cancer that has a tendency to show up later in the other breast--invasive lobular cancer.  But it sounds like yours is ductal cancer.  And sometimes at the time of surgery, the pathologist will find other spots that hadn't been seen on the mammogram of felt by the patient.  Usually these will be DCIS.  The issue is one of what is reasonable treatment for the known symptoms.  Sure, there might be spots of cancer in other parts of your body, but you won't remove your kidneys just in case there is an unknown tumor there.  For some women even a tiny spot of cancer in one breast initiates a need to get rid of both breasts "just in case."  For others breast-conserving surgery followed by careful monitoring is sufficient.  The MRI is a good idea although you need to be aware that they can have false positives.  So don't be too alarmed if another spot that needs investigating turns up.  If the MRI gives you an "all clear," you can move on to the next surgery with more peace of mind.  I hope it goes well and that you get clear margins.

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msfoti, Community Member
12/14/10 3:18pm

Hi Phyllis - MRI results came back - pleased to report there were no other abnormalities except for the area where I had the 1st lumpectomy, which is what the surgeon wanted to confirm and what I had hoped for. So we proceed with a second "surgical excision" (my surgeon doesn't like the term "lumpectomy" - she says "that's a made-up word") on Dec. 16 (Thurs.) and sentinel node biopsy. Wish me luck - hopefully I'll be done - at least from a surgical standpoint - by X-mas.

Happy Holidays to you and thanks for your help & support - M.

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PJ Hamel, Health Guide
12/14/10 4:17pm

Well - happy holidays! That's great news, so glad to hear it. best of luck with your treatment beyond surgery, and thanks for reporting back here; I'd been wondering how you were doing... PJH

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msfoti, Community Member
12/14/10 11:07pm

May I ask what your follow-up treatment was (after surgery)? What was your experience like w/ the lymph node biopsy procedure? I am still a bit sore (though nothing particularly bothersome) on my side and under my arm on the side where I had the first excision on Nov. 23, although the swelling has gone down to almost nothing and my incision has healed nicely (just in time for lumpectomy #2!). My surgeon told me my rib cage/side might be sore after surgery because some nerves can be cut or affected during the procedure (incision is right against where my breast meets my chest and lower armpit). By the way, they gave me a "contrast" MRI - said they wanted to view lymph nodes too. That also revealed no abnormalities, although that finding is of course subject to the biopsy. Did you ever have a breast MRI? That was one of the scariest tests ever. It was the first time I really felt like a "cancer patient." That machine was as big as a rocket ship and nearly as noisy!

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PJ Hamel, Health Guide
12/14/10 11:16pm

Hi - If you mean what other cancer treatment - chemo, radiation, 9 years of hormone therapy drugs. I had a sentinel node biopsy along with the lumpectomy, and don't recall any particular issues... Hope you continue to heal under your arm, and that the next surgery goes smoothly.

 

Never had a breast MRI, but CT scans - same deal. Noisy, and boy, you'd better not have claustrophobia! MRI being negative is REALLY good - they're very, very sensitive, and it would have picked up anything that was there. So - congrats on that! PJH

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Phyllis Johnson, Health Guide
12/15/10 5:55am

I'm so pleased that the MRI didn't find any new worrisome spots.  I haven't had a breast MRI, but I have had them for other places on my body, and I also find the noise scary.  I was told in advance that they are noisy, but not that the noise is so random.  I kept thinking that the machine was broken!  Since that first time, I ask for a sedative, not so much for the claustrophobia, but for the noise.  You will probably be sore after surgery, but not any more than from your first surgery.  I did have a weird numb feeling running down the back of my arm, but I probably had more nodes removed than you will because I wasn't a candidate for sentinel node biopsy.  My follow-up treatment was different than people get today because I had an ER negative, Her2 positive tumor before Herceptin was approved.  So they gave me plenty of chemo and radiation after my surgery.  We'll hope that the MRI was right about your lymph nodes and that you will be good to go once the surgery is over.  I hope it goes well for you and wish you a speedy recovery.

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msfoti, Community Member
12/18/10 11:18pm

Surgery went well on Thursday but I won't know for sure about the margins, etc. until the path report for a few days. They removed 3 lymph nodes during the sentinel node biopsy and they all came back clean - however, they do run more tests on them after surgery (along with the other tissue removed from the breast) so I am trying not to get to happy about that until the path report comes back! 

 

Still can't believe all that has happened - and all that I've learned - in just a little over 6 weeks. Incredible. I'll keep you posted on the path report. My surgeon says if we still didn't get clear margins this time, I will have a mastectomy next - although she's willing to do it (lumpectomy/excision) again if I am willing to do so. Hopefully that won't be necessary, but I just can't go through this lumpectomy surgery/waiting process a third time. 

 

I believe my malignant cells were ER+ and Her2 negative, so some form of tamoxifen or tamoxifen-like drug will likely be prescribed after radiation. I won't know about chemo until the path report comes back and I consult with an oncologist. 

Part of me actually wants to get chemo (I know that's crazy) but it would make me feel like I'm doing everything possible to prevent this from coming back.

 

Too much to think about - time to pop a percocet and go to bed! 

 

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Phyllis Johnson, Health Guide
12/19/10 6:52am

I'm glad the surgery went well.  ER positive, Her2 negative cancers usually have a good prognosis.  If the pathology report comes back with clean margins, you'll be good to go!  I know how hard it is to wait for that report.  Of course, you want to do everything possible to prevent cancer from coming back, but if you don't need chemo, you can avoid lots of possible side effects and get back to health faster without it.  Your doctor will discuss the risks and benefits of each possible course of action with you.

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PJ Hamel, Health Guide
12/19/10 8:09am

Sounds like "so far, so good" - hopefully the lymph nodes will indeed be clean, as well as the margins. If you're pre-menopausal, you'll take tamoxifen; if post-menopausal, an aromatase inhibitor.

 

I thought like you did about chemo; before I knew I pretty much had to have it (positive lymph nodes), I was thinking, "I'm going to go the most aggressive route, do whatever it takes..." If I had to do it over again, I WOULD NOT think like that about chemo. Little did I realize the side effects I'd still be dealing with, 9 years later. Not to say you'd have this experience, but chemo can deal you a real body blow, with permanent side effects. Phyllis could tell you about numbness in her hands; I could tell you about burning eyes, itching, and "chemobrain." Please read my post on deciding to have chemo, before you make your decision, OK?

 

That said - if you simply have to have it, then you deal - we all do. But if it's optional - think hard about whether NOT having it would be psychologically more stressful than the physical challenges you might encounter for the rest of your life. Take care - PJH

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msfoti, Community Member
12/25/10 1:50am

Here we go again, PJ - yesterday my surgeon called w/ the path report. To be honest, I was so upset I didn't hear or completely process what she said, and I have an appointment with her next week to review the path report in person and in detail. My surgeon has an excellent reputation (28+ years at University Hospitals in Cleveland) but a lousy bedside manner. That being said, the long story short is that after two lumpectomies I still don't have clean margins, and there were two more very small IDC spots (I didn't ask how big, but she said much smaller than the 1 cm IDC tumor removed during the first lumpectomy) plus more DCIS in there. She did say the nodes were clean, but then said something about "when they did the blue dye test, there were one or two tumor cells in one node" but they were "essentially clean" and an oncologist would have to determine if chemo would be necessary or if tamoxifen would be sufficient. I have no idea what this means and now I'm even more scared. 

 

I know this is a very treatable, even curable stage of cancer, and despite these setbacks, my prognosis is still good. At least I hope so! But please help me understand this. I realize without a path report in front of you (I will get a copy for me, of course) you don't really know what she said either. She said she completely understands if I want to do a mastectomy this time, and I am so sick of this lumpectomy-waiting-disappointment cycle that I'm ready for one, emotionally and physically. 

 

Besides my pathology confusion, let me ask a question several people have asked me - why didn't this work a second time? Is my surgeon screwing up? Am I an oncological nightmare? Are multiple lumpectomies EVER successful? At this point, I'm about to say screw the whole thing and get them both off. This is been the worst two months of my life and I still don't know what the hell I'm dealing with.

 

Sorry for the rant - thanks as always for your help, logic and compassion. Merry, Merry Christmas. I actually really enjoyed Christmas Eve tonight, instead of complaining about my annoying relatives, they all treated me like royalty, hugged me and told me they loved me. It will be a Christmas to remember - and appreciate - like no other. 

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PJ Hamel, Health Guide
12/26/10 8:26am

You've got that right - a Christmas to remember, albeit not in a very pleasant way!

 

First, bone up on our guide to understanding your pathology report. Once you get the report, you'll be using it as a reference to interpret as much of it as you can; what you don't understand, write down questions for your next appointment with your oncologist.

 

What you've described is, unfortunately, very typical. Surgeons try to take as little of your breast as possible, while still getting clean margins - that's why it's called breast conservation surgery. Some of my friends have had three lumpectomies on the way to clean margins; one had four. So this isn't bad work on the part of your surgeon; just bad luck. I had a lumpectomy, and the reporrt came back "no clean margins, scattered smaller cancers..." so I decided to just skip to the chase and have a mastectomy. At this point, unles you're willing to chance one more lumpectomy, it sounds like you might well go ahead and have a mastectomy - and reconstruction. So be prepared to research that.

 

As for the microscopic cells in your sentinel node - unfortunately, that's pretty common, too. It means the cancer has BARELY started to leave the breast - especially with just a few scattered cells in one node. I had one node fully involved (over-involved, since it had spread from the node into the surrounding tissue); so I opted for chemo. This, however, was before the advent of the Oncotype-DX test. Can't recall if I mentioned that already. If you're a candidate for it (ask your oncologist), then get it; it'll tell you if chemo would help. Unless your score is right in the middle, in which case you'll just have to choose. You'll have to balance possible lowering of recurrence risk with the "fear factor" ("How much will I worry about this if I skip chemo?"); and side effects, some of which can be lifelong. You'd want to read my post on choosing chemo.

 

Bottom line, you're still dealing with a very typical diagnosis, one which the medical community has a lot of experience treating. It's a challenge, trying to absorb all this, then constantly getting more unexpected news, results you'd rather trade for something more positive; I thought of myself as the ball in a pinball machine constantly hitting the wall and going in the wrong direction. But you'll get through this, just like millions of women before you. Oh, and one more thing - PLEASE don't jump to the conclusion that having both breasts removed lowers your risk of recurrence. It doesn't; please read our post on prophylactic double mastectomy.

 

So - happy Boxing Day! I've never figured out what it is, but I know they celebrate it in England, so have a good one. And remember - pick a spot on the horizon, somewhere you want to reach, and walk towards it every day. One foot in front of the other. You'll get there - I promise. Take care - PJH

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msfoti, Community Member
12/26/10 2:27pm
Thank you, PJ. You are truly a blessing - you have a marvelous way of explaining things that my surgeon is terrible at doing. I don't know what I'll do re the double mastectomy yet, but at a minimum, I'll do a mastectomy on the right side with reconstruction. I already have an appt. with the head od breast reconstruction surgery at Univ. Hospitals on Jan. 4. (Sorry if I already told you that.) I was under the impression the lymph nodes were either "clean" or not - is this incorrect? Am I now stage 2 instead of 1? How can the surgeon say they were clean, then tell me about the "one or two cells" that showed on the much more sensitive "stain" test? She did say the same thing - an oncologist will need to determine if chemo is needed or if tamoxifen would be sufficient. I will ask about the test you mentioned - she already said something about that but I didn't know much about it at the time. She also said even with the "one or two" lymph node cells, my prognosis is unchanged - over 90%. I am also going to meet with the same dr. whom I met with after my first lumpectomy to review my second path report. She was much more helpful than my own surgeon when it came to understanding clear margins, etc.I do not wish to switch surgeons at this point, despite the pretty awful bedside manner of my current one. She has a spotless surgical reputation, but an equally lousy personality. But with 28+ years of breast cancer surgery - if she can't get it right, who can!? Happy New Year and thank you for being here -Mary Reply
PJ Hamel, Health Guide
12/26/10 3:23pm

Mary, as for the lymph nodes - we're a victim of how good science has gotten. What would previously have been an "all clear" on the lymph nodes can now come back "1 or 2 cells...." How many women in the ast had 1 or 2 cancerous cells in one lymph node, and never knew it? they got the "all clear," and avoided chemo, and went on and did just fine. Now, with the tiniest of invasions - are you still going to have as good a result as if there were no cells found? Possibly? Probably? Certainly? No one knows. I think finding even a tiny bit of lymph node involvement moves you to stage 2, but don't let that get you down; as she said, I'd assume your prognosis is still WAY good.

 

If you opt for reconstruction, you'll have two surgeons - one to take it off, one to put it back on, to put it bluntly. Maybe you'll have better luck with the plastic surgeon than your current one. And, my experience, it's better to have a great relationship with your oncologist than your surgeon, because you're going to be seeing him/her a heckuva lot longer than the surgeon. So, see if you can do some homework and ask around about oncologists; if you're at a good cancer center (are you at a Comprehensive Cancer Center? They're government-designated as the best), they'll all be good; but some are bound to have better bedside manners. You'll be seeing this doctor for years, so best to have someone you like, not just someone you put up with.

 

Happy New Year to you, too, Mary - things will get better, they really will. Time heals. But you have to walk through all the mess first, there's no avoiding it. So keep your head up, and have faith that treatment is going to do its job, and you're going to go forward and get back on the path. Keep me updated, OK? I'd live to hear how things are going for you. Be well - PJH

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msfoti, Community Member
12/27/10 4:32pm

Oh, PJ - what I have learned in a week! My surgeon tried to explain this to me last week and of course is on vacation right now, but here's what I've learned. I have connected with The Gathering Place, a support network in Cleveland area that has tremendous resources to get cancer information, support and services. Marvelous and compassionate staff. My surgeon's office is faxing a copy of my pathology report to a staff member at The Gathering Place today and her job is to help patients like me interpret this kind of confusing information (she of course cannot give medical advice, understandably - but she serves as a type of "translator).

 

You are absolutely right - we know more about this disease than ever, and sometimes it's just too much to process. Here are two concise but very comforting posts from breastcancer.org (a web site the Gathering Place mentioned as a good resource) about this maddening lymph node issue:

 

http://www.breastcancer.org/news_research/ask_expert/2007_12/question_05.jsp

 

http://www.breastcancer.org/news_research/ask_expert/12_2009/q21.jsp

 

In short, as you know, my oncologist will need to determine my exact stage of cancer and treatment - that's not the surgeon's job - her job is to get as much of the malignancy out of me as possible. But, it's MOST LIKELY stage 1, at least based on this information. So right now it's on to mastectomy, reconstruction, treatment, and most likely, counseling. I had very bad depression in 1997 and have been on antidepressants since - was very successfully treated. I cannot risk a relapse of that, either. Honestly, that was just as bad - from an emotional standpoint at least - as this is!

 

Thanks again for your help - Mary

 

 

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PJ Hamel, Health Guide
12/27/10 5:03pm

Thanks for the links, Mary - I'll check 'em out. We actually partner with breastcancer.org as we both work to offer the best online health information out there...

 

And yes, be sure to watch out for that depression; I know how debilitating it can be. I'm glad you've found some help locally; it's such a comfort to be able to connect with "real people" around this challenge. When you get ready to decide on reconstruction, come on back here - we can definitely help with any decisions. Take care- PJH

Reply
msfoti, Community Member
1/ 4/11 1:05pm

Dear PJ,

 

Quick update: met with Dr. Soltanian, head of breast reconstructive surgery @ Univ. Hospitals here in Cleveland. After much thought I have decided to proceed with the bilateral mastectomy w/ saline implant (expander) reconstruction. I am fully aware that a double mastectomy won't eliminate my risks or increase my survival rate, etc. The reason I am choosing the double mastectomy is simple: my mother had breast cancer twice in two years in two separate breasts - two different types (first breast cancer was triple negative, next breast cancer ER+). After two failed lumpectomies in my right breast and nearly 2 months of emotional and physical upheaval, I am simply not willing to go through any of this mess again in the other breast. I have had it. This is what I wanted to do originally and the surgeon and a 2nd opinion talked me out of it; this time, I'm going with my "gut" instincts again.  

 

To be honest, the "flap" reconstruction procedures scared the hell out of me, and I don't want such a long or invasive surgcial procedure or recovery time. And this is news I wasn't expecting but was glad to hear: I don't have enough abdomen fat to make two new breasts! Now that's a first! I actually laughed when he told me that. I also know the saline implants can rupture and may need replacement at some point; that's fine with me.

 

Is it OK to wait a couple of weeks before the surgery? I am worried that because my margins weren't clear, that the malignant cells that were left in the margins are going bananas. 

 

 

Reply
PJ Hamel, Health Guide
1/ 4/11 2:52pm

First of all, don't worry about any stray cells "going bananas." Breast cancer is generally VERY slow growing. In fact, it's so slow that they estimate about 40% of women diagnosed with breast cancer would never see it develop into anything dangerous, even if it was totally untreated. Problem is - who wants to know if they're in that 40%?!

 

One question: I've heard the new "gummi-bear" silicone is the way to go. Wonder why you're opting for saline?

 

Also - not to dampen your spirits anyway, but I've heard the months-long expander/fill/implant process can be quite arduous. So be prepared.

 

Anyway - glad you don't have enough belly fat. HA! Smile

 

Take care- PJH

 

 

Reply
msfoti, Community Member
1/ 4/11 3:25pm

Yes - you are certainly right - the fill/implant process won't be a picnic and will take several months, but it is less invasive and not a frightening to me. Also, having two young children, I really can't stay in the hospital any longer than is needed, and I"m just not interested in taking "flaps" from various places on my body and transplanting them.  The before/after pics he showed me were indeed amazing, though. I originally opted for saline because I thought it was safer; he (surgeon) did tell me that the silicone feels more realistic and is perfectly safe; however, I don't have to make that decision right now - it's my understanding that the inflation process is done w/ saline; when I have the "swap" surgery after my implants are filled to the desired shape/size, I can choose my final implant type (silicone or saline) then.  

 

I will also see my oncologist for the first time (prior to my surgery) to go over path reports to date, etc. I did get a second opinion re the "isolated tumor cell" deposits found on two of my sentinel nodes - and yes, I am still considered node negative. This confuses me, but the 2nd opinion doc. (same one whom I consulted after my first lumpectomy) explained that women with these types of deposits have the same prognosis/survival rate as any stage 1 patient which is why they're typed as stage 1? I guess that makes some sense.

 

Whatever - I'm exhausted! I was reading more about your surgery and recovery - you're amazing - and a great resource. I am, as always, very thankful for you and this web site. I'll let you know when the surgery is scheduled.

Reply
PJ Hamel, Health Guide
1/ 4/11 5:17pm

Yes, the "node negative" thing can be confusing - but they've ascertained that unless there's a significant population of cancer cells in a lymph node, the prognosis isn't any different than if there were no cells at all. So, that's good...

 

I understand your choice of implants, for sure; just wanted to make sure you understood the process, which you absolutely do. I think you'l probably end up with silicone implants; I've heard they're very comfortable, and they can't rupture.

 

It's no wonder you're exhausted - you've been through the wringer! Gradually you'll get into the routine, and move forward and feel a bit better. Remember - every day that passes, you're that much closer to being through treatment. Best of luck to you - and let me know about your surgery. Take care- PJH

Reply
msfoti, Community Member
1/ 6/11 10:55pm

OK, PJ - surgery is set for Jan. 19th. I have my first consult w/ my oncologist on Tuesday and have a list of 17 questions for him! Anyway, here is my question I'm sure you get asked often - and I've already read your very helpful post about choosing a double mastectomy - I completely understand it may not prevent a recurrence, etc. But if my mom had two types of breast cancer in two breasts within two years (first occurrence was triple negative, second was ER+), don't you think that's a damn good reason for me to have the double mastectomy? Does anyone on God's green earth know what my chances are of getting this in the other breast? My mom took HRT for almost 20+ years, which is almost certainly a factor, combined w/ family history - but I really don't know how to proceed here and would appreciate your opinion. This is a big, big decision. I keep hearing "it's your body, it's your decision, I understand if you want them both removed but it' not medically necessary" from every doctor. Why can't someone tell me what to do?

Reply
Phyllis Johnson, Health Guide
1/ 7/11 5:31am

No one can tell you what to do because no one knows the future, and no one wants to be responsible for guessing wrong.  You really are in a guessing game, and it comes down to what feels riskier to you.  For some people a double mastectomy feels riskier because it involves extra incisions and scar tissue.  For other people a single feels riskier because they know someone who had cancer in both breasts.  In your case the person you know is your mother, and you will always wonder whether you might have inherited whatever caused both of her cancers.  Your chances of getting cancer in your other breast are low, but so is your risk of complications from a double surgery.  Even if someone has the research data that says X percentage of women your age with your type of cancer get a new cancer on the other side, and X percentage of women have complications from a double, no one can predict what will actually happen to you.  I can tell you that I have never heard a woman say she regrets having a double mastectomy once she had healed from the surgery.  By the time someone gets that far, she has thought through the risks and benefits and has made the best choice for her.

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PJ Hamel, Health Guide
1/ 7/11 6:10am

I'd second everything Phyllis said. You sound like you've made up your mind to have a double mastectomy. That's the best decision for you - at this moment - using the information you have. Now, move forward and don't second-guess yourself, OK?

 

And, you'll find as you go through treatment, you're often wishing the doctor would simply tell you what to do. Unfortunately - not going to happen. With cancer, we all get used to making very tough decisions pretty much on our own. Congratulations on your first big one! PJH

Reply
msfoti, Community Member
1/25/11 7:48pm

Well, thought I'd check in and give you an update. After consulting with 3 doctors - 2 surgeons and an oncologist - I chose the single mastectomy. My decision can be summed up with what my breast surgeon said: "If a double mastectomy were the cure for breast cancer, I would do that for all of my patients." My left breast was clear (per Dec. MRI and October's mammogram) so I decided to go with the single mastectomy w/ tissue expander reconstruction. I had the operation on Jan. 19. I feel pretty good overall, and even took a little peek at my poor reconstructed boob and it wasn't horrible! I am still reeling from 3 surgeries in 2 months, a cancer diagnosis, 2 "failed" lumpectomies, loads of medical information I don't understand, etc. - but overall, the surgery was a lot less difficult than I thought it would be. I kind of felt like a gorilla was standing on the right side of my chest when I woke up, but that's subsided now. The drain is a pain in the ass, but I knew it would be. 

 

So here's what I'm dealing with now: provided there are no surprises in the mastectomy path report (they fully expect more areas of DCIS, since the margins still weren't clear) from the Jan. 19th surgery, my oncologist says I am a stage 1, ER+, node-negative patient. This is good! Because of this diagnosis, I was a good candidate for the oncotype DX test, which my surgeon ordered a few weeks ago (using path samples from my lumpectomy). On the day of my surgery, my surgeon told me the results came back a very low number - 13 (out of 100). This is also good news, because it means my cancer has a very low probability of recurrence elsewhere in the body. You probably get asked this frequently, and I know there is no guarantee for anything to do with cancer - but how much faith should I put in this test? Essentially it means I will only need tamoxifen and not chemo. I should be happy about this, but now I'm scared. How do I know if tamoxifen is enough? 

 

Much love & thanks - 

 

Mary

Reply
PJ Hamel, Health Guide
1/25/11 8:07pm

Mary, this is a new test, but one that's shown - so far - surprisingly accurate results. With no node involvement, stage 1, and a low Oncotype - you're golden! If I had your diagnosis, I'd run screaming away from chemo. It's tough; and its side effects can last forever - literally, for the rest of your life.

 

Is there any guarantee your cancer won't come back? No, not for any of us, no matter how good the diagnosis. It's all a big roll of the dice; we all play the odds. But your odds are SO good, I think they're worth playing - don't you?

 

Make your decision, just like you did about the double mastectomy; then DON'T LOOK BACK. No second guessing. Little by little, you'll feel comfortable with the direction you've taken; and this will all fade into the past. Time heals, it really does. Take care- PJH

Reply
msfoti, Community Member
1/30/11 11:04pm

Thank you - one last question - do you think I should get a 2nd opinion re the chemo issue? Or forget about it and just concentrate on healing and recovery - physically and emotionally? I did have a rather large area of DCIS, and 3 separate invasive areas (1 cm tumor found via first lumpectomy, and two much smaller invasive spots in the 2nd lumpectomy. There were no invasive cells found in the mastectomy - only a small remaining area of DCIS). 

 

Here's another unexpected hurdle - my oncologist told me I can't take Paxil (which I've taken since 1997 for depression and it works WONDERS) and tamoxifen together. I had to see a psychiatrist (one who works with my oncologist) to switch antidepressants ASAP before starting tamoxifen. Quite honestly I can't think of a worse time in my life to change this medication - I have tried this process in the past - but I have never taken Lexipro, so here we go. It is what it is, and must be done. So this week I started taking the Lexipro. The psychiatrist had me switch right from Paxil to Lexipro - no tapering off - no taking them together - they are both SSRIs, but metabolized differently so Lexipro should not interfere with the tamoxifen. So far so good (w/ the Lexipro) - but it's too early to tell. 

 

I was thoroughly unimpressed with this psychiatrist. I saw her about a week before the mastectomy. She asked me questions like "how do you FEEL about having to go through two lumpectomies?" and "how do you FEEL about losing your breast?" (I am not minimizing anyone else's experience with this - believe me.) But I was super annoyed, and I said "well, how do you THINK I feel? I feel awful. But this damn breast has given me nothing but trouble for weeks! Get rid of it!" She just kept nodding her head and saying "mmm hmmmm" and writing in her notebook. She said nothing remotely comforting, reassuring, or insightful. I sure hope Lexipro works so I only have to talk to this woman once a year to get a refill. 

 

Thanks for listening to (or reading, rather) my rant! Sometimes the doctors I've encountered through this journey make me crazy. I might write a book. Some of this stuff is actually funny, in a bizarre and sick way. For example - I googled "paxil and tamoxifen" and the first search result had the headline "breast cancer patients who take paxil and tamoxifen have an increased risk of death." Well, that answered that question - I guess I do indeed have to stop taking Paxil! But I learned an important lesson - stop googling - only check the trusted web sites (like this one)! 

 

-M. 

 

Reply
msfoti, Community Member
3/ 5/11 10:44pm

Just wanted to let you know I had a single mastectomy on Jan. 19 w/ reconstruction - all has gone very well. I did seek a second opinion on the chemo issue and as I expected, the oncologist agreed chemo would not be effective for my low oncotype score (13 out of 100). At most it might get me a 1-2% additional benefit over the next 10 years - thus not worth the risks and side effects. So I'm taking tamoxifen daily and going for weekly "injections" in my "new" breast. I am pleased with the results so far and feeling very well, all things considered. I'm sure you've been asked this question before - I've had almost no side effects on tamoxifen, which I'm glad about; however, does that mean it's not "working?" 

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PJ Hamel, Health Guide
3/ 6/11 6:32am

SO glad to hear your good news! I was wondering if I'd hear from you again... Glad things are going well. Lack of side effects while on tamoxifen is common, and doesn't "mean" anything one way or the other; I didn't have any at all, aside from gaining 15 pounds! So, please assume its doing its job just fine.You must be young enough to be pre-menopausal? If so, what may develop over time are menopausal-type side effects, from lack of estrogen. You may find yourself having hot flashes, mood swings, or a dry vagina. But if not - you've dodged the bullet. Some women go through menopause with no side effects, and you may find the same with tamoxifen. Take care- PJH

Reply
Phyllis Johnson, Health Guide
3/ 6/11 7:46am

I'm delighted to hear that all went well.  I'm sure the Tamoxifen is doing its job even if you don't have side effects.  I wish you a happy and healthy life.

Reply
msfoti, Community Member
5/ 3/11 11:35pm

Hi Phyllis - just wanted to check in and let you know I had my (hopefully) final surgery on April 15. It went very well. I had the tissue expander taken out on the mastectomy side and a silicone implant put in, and the surgeon also did a "mastopexy" on the left side (a breast lift, to make them match more closely).  I am getting used to the results. The implant is so much more comfortable than the expander! It's amazing. I am quite proud of my new "boob job." I am feeling really well overall, though occasionally I find my mind worrying about recurrence, etc. But there's nothing I can do about it other than take care of myself and get my follow-ups and screenings. Tomorrow is my first follow-up appointment with the oncologist already. I can't believe it. 

 

God Bless you and thank you again for always answering my e-mails so quickly and with so much knowledge and compassion. 

 

Reply
PJ Hamel, Health Guide
5/ 4/11 5:34am

Hi Mary, PJ here - time flies when you're having fun, eh? NOT. Think of what a long journey you've made, since those first confused and scary days after diagnosis! Having that expander/fill process done with must feel very good indeed.

 

Little by little, your fear of recurrence will recede to the back of your mind. One morning you'll wake up, and the first thing on your mind won't be cancer; then someday, you won't think of it at all. Time heals, it really does; but you can't rush it. Understand that with your diagnosis and treatment, chances are excellent that you're done with cancer; keep that thought in mind, whenever the worry kicks in. And remember - we're always here for you, if you need support or reassurance. Take care- PJH

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Phyllis Johnson, Health Guide
5/ 4/11 5:39am

I'm so glad that the reconstruction results are good.  It's hard not to worry about recurrence.  Those thoughts will run through your mind from time to time, but it sounds like you are already doing a good job of reminding yourself there is no point in worrying about what you cannot control.  Your oncologist will probably have some words of encouragement today that will reduce your anxiety.  Thank you for giving us an update.  I'm sure it will encourage people who are just starting the process.

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Mellc, Community Member
6/ 3/11 1:44pm

Thank you for all this info on your threads.  I to have been diagnosed with DCIS and my Mum also had a similar diagnosis when I was a teenager she never wenton to have any more problems that I am aware of. I am scared and am booked 24 Jun for a lumpectomy I have all those same concerns you had, will the margins be clear ....etc, just want you to know you have given me the feeling I am not alone.  The info on this site is so helpful.  I have learned a lot and no doubt will continue over the next few months.. Thank you, Mell

Smile

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Phyllis Johnson, Health Guide
6/ 3/11 2:43pm

Mell, you definitely are not alone.  Many women have been where you are with a DCIS diagnosis and are doing fine, just like your mother did.  Let us know about any specific questions you have.  I hope all goes well with your surgery.

Reply
msfoti, Community Member
6/ 3/11 11:47pm

Mell,

 

I'm sorry to hear about your diagnosis but please don't let my experience with having to go through multiple lumpectomies (and ultimately a mastectomy) upset or frighten you. Everyone is different, and every breast cancer is different. DCIS is the "best" breast cancer diagnosis to have. Best of luck with your surgery. Please let me know how everything goes. 

 

Did your doctor recommend BRCA testing, due to your mother's history? I just went through this experience. I spent 2 hours with a genetic counselor who was very nice, but talking about every relative I could think of and what he/she died of and when was not particularly pleasant. I waited to do it until I was recovered from my surgeries and was in a better emotional state to deal with the results. I will get the results in about 3 weeks. I am not looking forward to that appointment either, but I guess it's best to know. 

 

Reply
PJ Hamel, Health Guide
6/ 4/11 4:45am

Luckily, even if you have breast cancer, your risk of carrying one of the BRCA genes is only about 2.4%; so the vast majority of women don't have to deal with this aspect of cancer. Here's hoping you're in that majority, msfoti - and it's nice to hear from you again! Hope you're feeling better and better every day- PJH

Reply
msfoti, Community Member
6/24/11 11:23pm
Well, I got the genetic test results and I tested positive for a BRCA 2 mutation. I was prepared for it, though. My family history is so bad and the geneticist had told me my mother's testing 5 years ago would not have picked this up. Her history - bilateral breast cancer, two different types, one of them ER---, as well as her sister/my aunt who died of ovarian cancer in her 40s, and countless other relatives on my mom's side - led my geneticist to suspect a BRCA issue, and thus he ordered the most comprehensive BRCA testing available, and he was right. So now we have an answer. This information could prove life-saving for me, as well as my relatives. Now I will discuss this with my oncologist and lay out a plan, which will likely involve removal of my ovaries and another mastectomy. But how many women get this much information? In a weird way, it's a relief. Reply
Phyllis Johnson, Health Guide
6/25/11 6:40am

Thanks for letting everyone know the results of your testing.  As you say, it isn't pleasant to go through this process, but now you have the information you need to make better decisions.  I wish you the best as you decide what's next.

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PJ Hamel, Health Guide
6/25/11 6:22pm

Well, I'm sorry you have the BRCA2 gene, but it's good that you at least know about it. These results will certainly inform your decisions about how to deal with the possibility of recurrence. I wish you all the best as you go through whatever you and your oncologist decide on... Take care- PJH

Reply
msfoti, Community Member
6/25/11 10:49pm

Thanks to both of you. Preliminary stuff I've read on BRCA 1 & 2 - and I may stop reading it, because it's pretty scary - indicates that prophylactic removal of the ovaries and breasts does indeed greatly reduce future risk - although of course, nothing is 100% with cancer (or anything else for that matter). Is that your opinion as well? Whatever my oncologist recommends, I will do. I would rather have more surgery at this point - when I am currently cancer-free - as opposed to deal with the trauma of another diagnosis. From what I understand, being BRCA 2 positive increases my chances of another, separate occurrence (like a breast cancer in my other breast or ovarian cancer), but does not necessarily affect recurrence - does that make any sense?  

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PJ Hamel, Health Guide
6/26/11 6:33am

Remember, we're not doctors here - just well-read breast cancer survivors. So it's best to rely on the information your doctors give you. That said, yes, I believe what you say is true - the BRCA gene increases your risk for a new cancer in the other breast, without increasing your risk of recurrence. And removal of your remaining breast reduces your risk for that new cancer by about 90%; while removal of your ovaries would reduce your risk of ovarian cancer by at least that amount, I'd suspect, though I really know very little about ovarian cancer. So, drastic as it sounds, mastectomy and removal of the ovaries is a decision many BRCA gene carriers make. You might want to check out the posts we've written on Jessica Queller, a young woman who's written a book about her experiences with carrying the BRCA gene: the decisions she's made, and how she arrived at those decisions. I wish you the best of luck - cancer decisions are never easy, never black and white... PJH

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msfoti, Community Member
9/ 3/11 12:27am

Phyllis, PJ and Mell, 

 

Just a quick update - I am doing well - all follow-up appointments with my oncologist have gone very well. Due to my BRCA2 mutation, I am scheduled for (prophylactic) mastectomy and hysterectomy on Oct. 19.  They will do everything in one surgery - 3 surgeons will be involved - my breast surgeon (for the mastectomy), plastic surgeon (reconstruction), and a 'reproductive oncological surgeon' (hysterectomy).  I chose to go the hysterectomy route instead of just removing the ovaries because although uterine cancer is not associated with BRCA mutations, tamoxifen can (rarely) cause uterine cancer. I realize that risk is very small, and the benefits of taking tamoxifen far outweigh this risk; however, since I've been on the wrong side of just about every statistic thus far, I am not going to leave the uterus in and spend my life wondering if I made the right decision.  Oddly enough, I feel OK about the whole genetic issue now - I have a reason why I got cancer (most people don't) and I have a plan to deal with it (preventive surgery). It's not foolproof of course, but nothing is. After this next surgery, I will have two new fake boobs and no periods (and hopefully no more cancer!). That is definitely something to look forward to.  Hope all of you are well!!

 

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PJ Hamel, Health Guide
9/ 3/11 7:09am

Thanks for the update. This sounds like an all-out offensive in the war on cancer! I'd say you're reducing your risk of recurrence by a huge amount - I'd assume the stats agree? Best of luck with the surgeries - it'll be a tough recovery, no doubt about it, but at least it won't be prolonged into multiple surgeries. And, every day, you know you're getting better and better - even if it seems at times progress is slow. Time heals; it really does. You'll get there. And we'll be here for you, whenever you need us. Best of luck - PJH

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Phyllis Johnson, Health Guide
9/ 3/11 7:50am

I'm so glad you wrote in to update us.  It sounds like you have a clear understanding of the risks of your BRCA2 mutation and a great plan for reducing those risks to a minimum.  Your optimistic outlook on the whole situation will help you as you recover from surgery.  My best wishes for a speedy recovery and many years of health and happiness.  Let us hear how you are feeling after surgery (once you are feeling well enough to use the computer).

Reply
msfoti, Community Member
11/18/11 11:27pm

Hello my friends!

 

I just wanted to let you know I had surgery on October 19 - a month ago tomorrow! I had a preventive mastectomy, reconstruction (tissue expander) and hysterectomy. It took over 8 hours. The hysterectomy was done laparoscopically, and apparently I had a "very large and challenging uterus" that took a long time to remove this way. But all went well. The pathology came back clear - no cancer found in the breast, ovaries, uterus, fallopian tubes or cervix - this was great news. Although it would be unusual to have cancer so soon after my first breast cancer, it was certainly not impossible, given my genetic status. My oncologist told me I have now done "everything humanly and medically possible" to reduce my risk. I am now back to work and feeling almost normal again. I do get tired frequently, as when I was released from the hospital I was anemic - apparently I lost quite a bit of blood during the surgery, but not enough to require a transfusion. 

 

Despite being in instant menopause, I am not uncomfortable. I've had a few hot flashes, but nothing major. I am thrilled to have two new reconstructed breasts and no more periods! When I threw out my tampons I was thrilled! What a great day. It was a hell of a journey, but now I can enjoy the reward!

 

One question - my oncologist switched me from tamoxifen to arimidex now that I'm post-menopausal. I've read about all the nasty potential side effects, but everything I've read (and what my doctor told me) seems to indicate it is more effective than tamoxifen in post-menopausal women. Do you have any idea why this is? I don't really understand how these medications work. I am having some joint pain, which I didn't have before but my doctor said to expect (it's the most common side effect) and let him know if it gets too uncomfortable. He also recommended a baseline bone density test because apparently it can cause bone loss, so that will be monitored from now on as well. But it's a small price to pay, especially if I remain cancer-free. 

 

Hope all of you are well - enjoy Thanksgiving - I certainly will! God bless you and thanks as always for being there for me. 

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PJ Hamel, Health Guide
11/19/11 6:01am

Good to hear you're doing so well! Hopefully you stay on the same path. While tamoxifen binds to cancer cells, preventing estrogen from doing so; aromatase inhibitors actually prevent estrogen from being made. 

 

So, how does an AI work, exactly? Aromatase is an enzyme that turns the hormone androgen into estrogen. No aromatase = no estrogen. No estrogen = breast cancer cells can't grow (in women with hormone-receptive cancer). An aromatase inhibitor does exactly what it says: it inhibits the enzyme from doing its job. How? By binding itself, either temporarily (Arimidex, Femara) or permanently (Aromasin) to aromatase so that it becomes dysfunctional, and can't turn androgen into estrogen.

Tamoxifen works by preventing existing estrogen from binding to breast cancer cells and helping them grow; however, it does an imperfect job - not ALL the cancer cells are covred. But an AI will actually reduce the amount of estrogen in your body by 90% to 95% - though only in postmenopausal women, which is why AIs are only recommended for women who've stopped having their period. Women whose ovaries are still active, who are still menstruating, produce too much estrogen for AIs to be effective.

 

Hope this helps. And good luck going forward - PJH

Reply
msfoti, Community Member
12/26/11 11:08pm

Hello my friends - 

 

It's been over 2 months since my surgery and I'm continuing to do well. I have noticed the arimidex is causing some hot flashes and joint pain. The joint pain isn't too bad. It's not painful, exactly, but more of a stiffness and discomfort, particularly in my hips, knees, and sometimes my neck, feet and hands. This is the most common side effect my oncologist warned me about. I don't think it's bad enough to discontinue the medication and I am able to go about my daily life, but it does concern me.

 

I have a few questions: 1) is this discomfort likely to continue (or worsen) if I continue the medication as recommended (for the next 5 years)? and 2) is the medication actually causing joint damage? My oncologist wants me to have a baseline bone density test in January and continue every year or so, because arimidex can cause bone loss. Is that what causes the joint pain? How does lack of estrogen cause these symptoms? 

Reply
PJ Hamel, Health Guide
12/27/11 5:33am

Hi - Nice to hear from you again, and I'm glad you seem to be doing well.

 

Arimidex doesn't cause joint damage, so far as I know; simply pain and stiffness. Usually, women can deal with this particular side effect with OTC painkillers and exercise; some women,however, find it so severe that they discontinue the drug. In my experience, it isn't cumulative; i.e., it won't get worse and worse and worse over time. Since you've just started taking the drug, it may get a bit worse over the next few months; but hopefully that would be it.

 

Arimidex and other aromatase inhibitors can indeed cause bone loss (though, in my understanding, it's not the bone loss that causes the joint pain). Your baseline DEXA scan will provide you with the info. you need to track this. I started taking a bisphosphonate drug (to prevent further bone loss) about 3 years into my Arimidex therapy, but quit it after 1 year due to side effects. I substituted particular kinds of exercise, and managed to stop the bone loss - so it all worked out. Check out my post on breast cancer and bone loss for more information.

 

I'm not sure how loss of estrogen causes all this, biologically or chemically speaking; that would be a great question for your oncologist, who'd be more versed than those of us here on the chemistry of the various pharmaceuticals involved in breast cancer treatment.

 

Good luck - I hope you continue to take the Arimidex and do well with it. PJH

 

 

Reply
msfoti, Community Member
2/ 8/12 11:08pm

This saga never seems to end - my final reconstruction surgery is on Friday (Feb. 10) and I found out last week that my mother, who is 72 and a two-time, six-year breast cancer survivor, has had a recurrence in her liver. It was discovered via her routine oncology appointment (blood work) and confirmed on a CAT scan. She had a liver biopsy today. Since she has had two types of breast cancer (triple negative and ER+, respectively), it could be either one of those types, or it is possible (but unlikely) it's an entirely different problem or cancer. 

 

I have a routine appointment with my own oncologist tomorrow and I am sure he will help me process this information from a medical standpoint, but I am in shock and am utterly devastated, both for my mom and for myself. I can't separate her prognosis from my own. She was stage 1, lymph node negative, both times; however, she did not have the benefit of several tests and procedures that I did. She did not know she was BRCA2+, and thus did not have the preventive procedures I have had. Also, she did not have the benefit of the oncotype DX test, on which I scored very low. It is possible she had a much more aggressive type of cancer on both occasions.

 

Please help me understand that her recurrence does not mean my own will recur. I realize nobody can make that guarantee, but we carry the same BRCA mutation and now I feel like there's no hope that I will survive my own breast cancer. I was just beginning to feel like I wasn't thinking about it 24/7, and now I can think of nothing else. 

 

Before you suggest it, I have already contacted the counselor I saw at the beginning of my own journey and she and I are now meeting on a weekly basis. 

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PJ Hamel, Health Guide
2/ 9/12 5:59am

Seeing a counselor is the absolute right thing to do. As you said, no one can guarantee your cancer won't return; which is true for all of us, no matter what type/stage we have. So the issue is learning to deal with fear.

 

Also, as you point out, your mother didn't have the same preventive treatment as you've had; so think what a difference that makes! You've done everything possible to reduce your risk of recurrence, and odds are good you'll never have cancer again. You're understandably upset; you have every reason to be, feeling terrble for your mom, worrying about your own cancer... But what happens to your mom is NOT a preview of your life going forward. You're two different women, and your cancer experience – whatever it turns out to be – will be your own.

 

I hope the therapist is able to help you deal with this. I'm very sorry you and your mom are having to go through it, but I'm glad your mom has you there for support. And remember - we're here to support you, whenever you need it. Take care - PJH

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Phyllis Johnson, Health Guide
2/ 9/12 6:41am

I'm so sorry to hear about your mother's recurrence.  Anytime someone we love has cancer it can trigger our own fears of recurrence.  You know in your head the reasons why your mother's situation is not a prophecy of what will happen to you.  Now you will need to work through it emotionally with the counselor's help.  Have yourself a good cry.  Think about all the worst things that could happen and think through the resources you will use if the worst does happen.  Get those fears out in the open and look at them.  Then with the counselor's help, put the fear away and focus on living joyously now. 

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msfoti, Community Member
10/31/12 11:41pm

Dear PJ and Phyllis,

 

Sorry I don't have better news to report, but my dear, sweet mom died on September 9. It is devastating beyond description.  As I told you back in February, her second type of breast cancer (she had two separate types, one was triple negative, the other ER/PR+, one type in each breast, in 2006 and 2008, both were stage 1/lymph node negative) recurred in her liver and bones. She went through about 6 months of chemotherapy reasonably well, then was switched to another chemo in July. Her health began to really deteriorate in August. We thought she was experiencing side effects from the new chemo, but it was really her body shutting down and her liver failing. We had a terrible experience when she died. Hospice and/or palliative care was never even mentioned by her oncologist or the hospital - she went to the ER, twice by ambulance, 3 times before her death. Each time, they filled her up with IV fluids and medications and sent her home. I am appalled at how the medical system approaches death and dying. Truth is, they don't approach it at all - and my mother had a living will! My mom didn't have to suffer as much as she did. I am so angry with the entire oncological profession - I feel she was over-treated and her oncologist continued to treat her when there was no hope. She should have been in hospice several weeks before she died. We didn't arrange it because, quite honestly, we didn't really understand she was dying until the day before her death. Nobody told us until then. I knew in my heart we were losing her, and yet they continued with scans, tubes, tests, medications, etc.... horrible.  I filed a formal complaint against her oncologist and the hospital for these reasons. We were told she was dying by a doctor OVER THE PHONE in the ICU. This doctor couldn't even bother to examine her in person or meet with us, her family - he viewed her records from his home computer. Her living will was never even brought up. We didn't know she was dying; we were told it was chemo side effects. Her oncologist even recommended switching to another chemo just 2 days before she died! Why would anyone with half a brain even consider such an option? Why was there no compassion, no discussion of what was really happening? Surely an oncologist of 20+ years knows when a person's liver is shutting down. 

 

When I have my next oncologist checkup next month, I am going to have a long talk with him about this. Although I cannot change what happened to my mom, I can perhaps change what might happen to me. I can't control if my cancer comes back, but God help me, if I am ever faced with that, I may opt for no treatment at all. What my mother went through was inexcusably inhumane! She was poisoned for 7 months and died anyway. It's a nightmare.

 

I am in counseling again, and so are my children. They are 13 and 10. They loved their grandmother, and were very close to her. They know she had breast cancer, and they have of course made the connection that I had breast cancer too. I have had nightmares and can't get the horrible hospital images out of my head. My husband is calm, logical and supportive, but he is scared too. 

 

My mother was my hope, my survivor, my inspiration. I was sure if she could survive, I would too. Now I don't believe that anymore. I am tired of cheery pink ribbons, the praises of early detection. And healthy eating? Exercise? Why bother? My mother did it all - was proactive with her health, swam a mile 3 times a week, maintained a healthy weight, got her mammograms, then after her diagnosis had 2 separate mastectomies, chemo, radiation, tamoxifen, etc. And after all of that, a devastating recurrence (after 4 years) followed by the most horribly toxic chemo imaginable, and then she died. What good did all of that treatment do for her? Not a damn thing. 

 

 

Reply
Phyllis Johnson, Health Guide
11/ 1/12 5:47am

Oh, I am so sorry that your mother and her family were put through such an ordeal.  Oncologists are trained to fight to save lives, but they also need to have the wisdom to know when to help the patient and family prepare for the inevitable.  It may be that the oncologist himself did not realize how close to death your mother was, but at some point the doctors should have explained the diminishing benefits of chemo and offered her the option of hospice.

 

Healthy living is no guarantee of a good outcome, but of a group of people the ones with the healthy habits are more likely to do well.  Many others agree with you about the false cheer of pink ribbons when about 30% of those who appear to have beat breast cancer will eventually develop metastatic disease.  Early detection has helped, but it is not enough.

 

So where do you go from here?  I hope writing this letter has been theraputic, and your counseling sessions should help.  As you work through your grief, you might want to work to support hospice or fund research into breast cancer prevention.  You were in a situation where you were totally helpless without even the opportunity to help your mother decide whether she wanted to decline treatment and get the help of a group like hospice.  Now you can take action to at least partially replace the memories of your mother's last days with memories of her when she was healthy.  Please accept my sincerest sympathy as you grieve.  

 

Thank you for taking the time to write here.  Your letter may help someone else make the decision to stop treatment at the best time.

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Phyllis Johnson, Health Guide
11/19/11 4:16pm

I'm so glad to heart that you are recovering well from surgery--that was one LONG operation!  I also found that it was easier to cope with side effects when I saw them as part of an all out attack on cancer. Take care of yourself and don't try to do too much too soon.  I'm sure Thanksgiving will be heartfelt this year!

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sunix, Community Member
11/21/11 11:46pm

I found this site tonight while searching for information regarding my very new breast cancer diagnosis. I read with interest about your journey of the past year and want to thank you for sharing the details and updates. You are inspiring in so many ways. I had a core biopsy of calcifications done on Thursday and was told Friday that it is cancer. I am expecting the results of the final pathology tomorrow and will be presented my options for treatment. I am also BRCA 2 positive with a strong family history of various cancers including sisters with breast and ovarian and have thus been advised to consider a double mastectomy. I am scared and anxious but again, thank you for posting here. You've helped me tonight.

 

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Phyllis Johnson, Health Guide
6/26/11 8:03am

Your oncologist is the best person to advise you about the medical risks and benefits of prophylactic removal of the breast and ovary.  I can tell you from my own experience that these days they usually take ovaries out with laproscopic surgery that has a very quick recovery time with minimal pain or scarring.  I had mine done on a Friday and was back to work on Monday.  I haven't had a prophylactic mastectomy, but it it my understanding that it is easier surgery because no lymph nodes are removed.  So while no surgery is fun, if you decide to go the prophylactic route, you may find it easier than your cancer surgery.

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Mellc, Community Member
6/ 4/11 1:51pm

THank you for your reply. Thing is I dont have many female membersof family to ask about medical history but I do have a daughterwho is 26. SO it would be good to know. I mentioned years ago many times to doctors should I be screeneda bit earlier and they didnt seem very interested.  In the back of my mind I guess I always feared I may get something similar. Im assuming she had DCIS as she had a milk gland removed after some kind of pre cancerous condition, i am only guessing it was DCIS. I remember going to Guys hospital with her and her relief when they told her it had all been taken away. As a young teenager I guess to wrapped up in my own life to take a lot of notce and my dad didnt seem slightly concerned.  I have a lot of male relatives who have died of cancer young, my dad his dad etc, etc but unsure if this has any bearing on me? I will keep you posted as to my progress Im off to Vegas with my friends this Fri before the op and intend to have a really good time there!! Then face whatever is coming my way on return. Thank you for your support.  Mell 

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PJ Hamel, Health Guide
6/25/11 6:28pm

Mell, I hope you had an excellent time this weekend in Vegas! Nothing like putting your worries aside for a few days, eh? FYI, male relatives with cancer (unless they had breast cancer) don't increase your risk for breast cancer, or your daughter's tisk, or for one of the genetic mutations for breast cancer. In about 85% of us, breast cancer is completely random - no known or recognized risk factors. Your mother having breast cancer, however, did increase your risk - and your daughter's, as well. You might consider genetic counseling; it woul dbe something to ask your oncologist, once you get past the surgery, get yor pathology report, and find out exactly what you're dealing with. So, best of luck - I hope everything goes well for you. PJH

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Mellc, Community Member
6/26/11 12:46pm

I had an amazing 9 days in Vegas, Ilive in the UK in case folks didnt realise! Came back and had surgery Frid just gone. I am home now drain out this morning (Sunday).  Seeing surgeon on Thu evening to hopefully learn more. I am assuming path results may be back by then and hoping I dont require more surgery. Not in as much pain as I thought and my husband been great playing nursey. Sleeping a lot I expect still full of drugs from surgery. WIll keep all updated on my progress. Thanks for the support.

 

Mell

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PJ Hamel, Health Guide
6/26/11 1:04pm

Things are sounding good, Mell - 9 days in Vegas, WOW. Quite different than home, I assume. Glad your drains are out already, and you're not in much pain. If/when you see your pathology report, you might want to check out our short guide to understanding your pathology report (or our detailed guide to your pathology report, for that matter); either one will help you understand what you're reading. Best of luck - PJH

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chris, Community Member
2/ 2/12 10:04am

Hi,Just a note from someone who found these series of posts interesting and informative.I really am writing to explain something off topic,Boxing Day.In England in the days of service,rich families employed live in servants,butlers,cooks etc.On Christmas day the "Family' was attended by their employees who made sure that they had a good Christmas.On the following day,the servants were given presents by the family and these were called Christmas Boxes.From this tradition the day after Christmas became known as "Boxing Day."

                       

                      Sincerely,

                                  Chris

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By msfoti, Community Member— Last Modified: 03/31/14, First Published: 10/27/10