Tuesday, July 22, 2014
Just Diagnosed with Cancer? Chat with Experts

Monday, October 19, 2009 Allen, Community Member, asks

Q: Poorly differentiated 6 cm tumor - prognosis?

My wife was just diagnosed with breast cancer. She has dense, cystic breasts but with yearly visits nothing ever showed up until last Wednesday. Today at our MRI we learned her tumor is 6cm and poorly differentiated in her left breast. There are two possible tumors on her right breast. I'm completely in a panic mode - I want to be supportive but feel like my wife has been given a death sentence. She is the love of my life and 54 years old. In total shock.

Answer This
Answers (7)
PJ Hamel, Health Guide
10/20/09 4:33am

Hi Allen - PLEASE don't take that MRI result as 100% truth; MRIs are absolutely notorious for giving false/misleading readings. They often show what looks like cancer, but isn't. Until she has her biopsy results, she won't know the true extent of the tumor, nor what kind of breast cancer it is; only a biopsy can tell you that. Also, MRIs very often show "tumors" in both breasts, when in reality it's very unusual for breast cancer to be found in both breasts - it's usually limited to one.

 

Once she has her biopsy, the oncologist will be able to develop her treatment plan. Breast cancer isn't the death sentence it once was; the vast majority of women are now treated for it, and move on. It's no walk in the park, for sure; treatment is tough. But with you there beside her, I'm sure the two of you will handle this rocky path. Remember, cancer is a rock in the path; step over it - the path will still be there. And you'll both still be on it.

 

Please stay in touch here - we can help you through this. Good luck - PJH

Reply
Allen, Community Member
10/20/09 10:54am

God Bless you for the quick response.  Waiting on pins and needles for the biopsy results of sites on the right breast that were biopsied yesterday.  If positive we're ready to meet with our surgeon.  If not they want to do another biopsy tomorrow using MRI guided needle.  We haven't gotten formal biopsy results from the left breast -we were just told it's bad news, it's cancer, and the mammography doc mentioned the larger size/poor cell differentiation.  My mind/emotions are racing. Should I start the second opinion wheels rolling, etc. etc.  Having trouble eating/not crying just walking along the street.  Everything is so raw now, and feel so alone.  Your comments were a lifeline in the middle of night.  Thank you, thank you.

Reply
Allen, Community Member
10/21/09 7:18pm

Yesterday got back results that right breast biopsy was negative - first glimmer of light.  Need to go for MRI-guided biopsy of same area to make sure tomorrow afternoon.  Think we've selected a surgeon to see hopefully Friday - feel good about that.  Finding it hard to juggle work.  Emotions all over the place but actually got some good sleep last night.  Worried about how we'll handle news of what stage the cancer is/how aggressive it is or isn't/what we're facing.  Still trying to think about stepping over that rock on the path. 

Reply
PJ Hamel, Health Guide
10/21/09 7:25pm

So, that's a good step in the right direction. Now you're waiting for the pathology report on the other breast? That will tell you a LOT about the cancer, including stage, and whether it's hormone-receptive and/or HER2-receptive (or neither), all of which will impact the direction her treatment takes. Waiting is hard; but you'll get through it. You WILL step over that rock, because you'll have lots and lots of hands reaching out to help you - both of you. Friends, family, and the community at this site. Keep in touch, OK? We're here for you. PJH

Reply
Allen, Community Member
10/21/09 7:45pm

Thank you, PJ.  Haven't personally seen the path report done on left breast - will be sent to surgeon.  Tomorrow's biopsy results on right breast may or may not be ready by time we meet with surgeon on Friday - but will have first results on right breast which were negative.  We haven't been told anything about pathology other than "poorly differentiated" comment.  Thanks for being there.

Reply
Allen, Community Member
7/22/13 2:49pm

Hi PJ - it's been a long time since we've been in touch.  This September we begin our 5th year after diagnosis.  A big milestone!  A few months ago we got a clean MRI and her CEA has finally started to go down a little.  So all good. 

 

Big stress this week about Prophylactic Oopherectomy my 58-year-old triple negative wife is scheduled to have Wednesday. She doesn't have BRCA1/2. In January her OBGYN noticed a tiny cyst on one ovary during a transvaginal sonogram. She said it was highly unlikely the cyst was malignant - but recommended removing the ovaries and fallopian tubes just in case given her history of breast cancer.  My wife opted for watchful waiting for the next 3 months and had another sonogram.  The cyst was ever so slightly enlarged as well as the other ovary. Her OBGYN strongly recommended my wife have the oopherectomy and she finally agreed. 

 

But now I'm getting cold feet - I've seen it can increase risks of dementia, lower sex drive and cause worsening of problems in women with emotional/psychological issues.  My wife has been taking medication for depression.  Don't want to worry my wife but I want to make sure she doesn't have regrets.  The OBGYN made it seem like a little deal - now that I'm surfing the web it seems like a BIG deal because of loss of progesterone/estrogen.

 

Just wanted your advice PJ - should I put the brakes on?   

Reply
Phyllis Johnson, Health Guide
7/22/13 3:07pm

Allen, at 58 years your wife is probably not getting much estrogen/progesterone from her ovaries.  I haven't read the material you are talking about, but I would guess that when removing the ovaries causes problems, it is in younger women who experience a sudden drop in hormone levels because of the surgery.  

I had this surgery at age 52 for the very same reason, an ovarian cyst that didn't go away after watchful waiting.  The surgery was done with a laproscope, and I recovered very quickly.  I don't remember any problems afterwards.  Do talk it over some more with the doctor and make sure you get all your questions answered.  

Congratulations on five years and a good test results!

Reply
PJ Hamel, Health Guide
7/22/13 4:05pm

Hi Allen - Glad to hear things are going well for you guys, relatively speaking - 5 years is a nice milestone! I agree with Phyllis - unless Your wife is pre-menopausal (doubt it highly?), she's already lost pretty much whatever estrogen benefit she was getting. At this point, the ovary removal sholdn't affect her hormone levels - I'd assume the symptoms of estrogen deprivation you cite were for pre-menopausal women undergoing ovary removal. Any surgery is stressful; heck, being a cancer survivor is stressful. But in my opinion, she should probably go ahead with the surgery, and hope/assume she'll have the same type of experience as Phyllis. Best of luck to you - and nice to hear from you again! PJH

Reply
Allen, Community Member
7/22/13 4:23pm

Thanks much PJ and Phyllis.  My wife is way past menopause - more than 5 years.  That's the problem with the web - couldn't see the precise age of the women who were at increased risk of dementia, etc. in studies.  The interesting thing is our oncologist hasn't mentioned anything about the transvaginal scan, etc. and seems to not be in loop on that part of body.  Some bloggers were saying a woman's ovaries are like a man's testicles and shouldn't be casually removed, etc.  Made it seem like was a misogynistic procedure.  My wife just wants to be alive.  Helps to get reality check on oopherectomies - just wanted to make sure we weren't being overly aggressive.

Reply
Phyllis Johnson, Health Guide
7/22/13 6:38pm

I agree that ovaries shouldn't be casually removed.  My doctors had two main reasons for wanting to remove the ovary with the cyst.  One was that there was the remotest possibility that the cyst was cancerous, not likely, but with my history the doctors didn't want to take any chance.  The more important reason was that the doctor thought there was a possibility that while the cyst itself might not be cancerous, it could hide symptoms of ovarian cancer.  One thing we did before I let them take it out was check my hormone levels.  I was pretty sure that chemo had put me into menopause, but before I let them operate, I wanted to know for sure.  Since I was no longer getting any benefit from ovaries, the surgery was a small price to pay to know for sure that I didn't have ovarian cancer and that I wouldn't be at risk for it in the future.

Reply
Phyllis Johnson, Health Guide
10/20/09 5:57am

As PJ says, you need the results of a biopsy before you know for sure what is going on.  If she does have breast cancer, you will find the strength to get through the treatments.  I had an aggressive cancer with a poor prognosis, and I don't know how I would have managed without the support of my husband.  That was eleven years ago, so no matter what the news is, it's important to understand that with today's treatments women can get well even if they have large and/or aggressive tumors.

Reply
Allen, Community Member
10/20/09 10:58am

Good for you - it's hard to know how "to be" right now.  Tears are so close, the fear so huge.  I don't want to be pollyannish, am trying to keep my wife on an even keel as much as possible keeping the normal routine as much as possible.  Another incredibly difficult thing in the mix is the heroic job my wife has been doing for the last 3 years caring for her 84 year old father with Alzheimer's in our home...another complication we'll deal with going forward. 

Reply
IRONSIDE, Community Member
10/20/09 11:27am

Hi Allen, Hope you do not mind me jumping in. My BC had spread to stomach and colon, I was advanced stage 4. I made it and so will your wife. You are in shock and cry if you want to ,then after that give your wife the biggest hug and kiss. Positive thoughts to you ,your wife and her Dad. This is a wonderful forum and the experts keep us all going.

Reply
Allen, Community Member
10/20/09 1:53pm

Not only don't I mind - your support made my morning.  It's taking it hour by hour right now until we know what we're up against.  Thanks for the advice.  Will do my best to keep it positive.  I do a lot of positive healing imaging while she's asleep and my arms are around her. 

Reply
Phyllis Johnson, Health Guide
10/20/09 4:33pm

There's no right way "to be."  I hope you get good news from the biopsy, but whatever happens, just share your authentic emotions with your wife.  My husband and I tended to take turns falling apart.  Someone has to hold it together long enough to schedule appointments, get supper, and ask the follow-up questions at the doctor's appointments.  The coping skills you have been learning caring for your father-in-law will serve you well in this situation.  

Reply
PJ Hamel, Health Guide
10/20/09 5:45pm

Allen, where there's life, there's hope - never were truer words spoken than about cancer. Treatments are improving SO rapidly... esp. for breast cancer. Did you know there are just about 2.5 million breast cancer survivors in the U.S.? That's a LOT of women who've gone through this and are living proof that cancer can be beat. I trust you'll find lots of support at this site; we're here for you. And there's no "should" about cancer and how you feel: validate your feelings. You're entitled to them, and they're right for you, whatever they are. Try to move past the fear; try to hold onto the hope and good, "Pollyanna" feelings. Both will come and go... We're here - sometimes even at 2 a.m.! One question: is your wife being treated at a good cancer facility? Please take a look at our government-endorsed list of Comprehensive Cancer Centers, which are the top 40-something dacilities in the U.S.... Best of luck to you both - to all three of you (Dad too). PJH

Reply
IRONSIDE, Community Member
10/21/09 7:13am

Allen, one more point. My Husband and I always had a close relationship. I know this may sound odd but Cancer brought us even closer. During my chemo we were like a couple of newly weds. I guess it makes you realise how valuable life is.Every day now is a gift, I do not waste a moment thinking about 'That' time but look to the future and all it holds.God Bless.

Reply
Allen, Community Member
10/21/09 7:48pm

Great advice - I know what you mean about the closeness.  Living through the Alzheimer's with her father has also brought us much closer - through all the pain that horrible disease entails. 

Reply
Allen, Community Member
10/21/09 7:52pm

Yes - our surgeon is at a top-40 comprehensive cancer center.  Thanks for asking.  It is so subjective and my wife feels good about it.  Am grateful for the progress made today.

Reply
PJ Hamel, Health Guide
10/21/09 9:20pm

Excellent, Allen - I was cared for at a CC Center, and was very, very happy with every aspect of treatment. One hint: when it comes to choosing an oncologist, be sure you find someone you both like and trust, someone you feel comfortable with. You'll most likely be dealing with this doctor for many years (given the long-term drugs, etc.); it's REALLY helpful to have a comfortable relationship. Thanks for staying in touch - PJH

Reply
Allen, Community Member
10/21/09 9:25pm

Have gotten glowing recommendations about the oncologist by a few people - works as a team with the surgeon we're seeing.  He saved a friend's life with a very difficult case.  Just got off the phone with his assistant who called me back at 7:30p - said he's very busy and travels a good deal but that someone from the team will always be there for us.  She sits close to the surgeon's assistant.  Also the center is very close to our home which helps.

Reply
PJ Hamel, Health Guide
10/22/09 6:19am

All sounds good, Allen - you're definitely on the right track, as far as "the details." Hope the meeting with the surgeon goes well - PJH

Reply
Allen, Community Member
10/22/09 10:31pm

Having a rough night.  Despite the good news about the right breast I'm dreading the meeting with the surgeon.  I have my wife's path reports in my bag and they're burning a hole in my psyche.  I feel like the words we'll hear at our 9:30am meeting with our surgeon tomorrow morning will change our lives - and I'm horrified to hear those words..."stage ____" - has spread to the ____"  I feel embarassed to say it because you all have been so brave in the face of the same situation.  Please pray for us.  I'm so worried about my wife...and feel so helpless. 

Reply
PJ Hamel, Health Guide
10/23/09 6:24am

Those middle of the night fears are always the worst, Allen. The sun comes up, and your spirits rise with it. I'm betting your surgeon will prove very reassuring. You'll find a whole team of doctors and associated medical personnel rallying around you both - it's amazing how many different people will care for your wife. And it's gratifying and heartening how smart they are - how much they know, how hard they work. Since you have her pathology report already, you may want to take a look at our Guide to Understanding Your Pathology Report - I think you'll find it helpful. Good luck today - PJH

Reply
Allen, Community Member
10/23/09 4:20pm

You were so right.  Just got back from the hospital - had a nice lunch and took a walk.  We were reassured in so many ways.  My wife has invasive ductal carcinoma in the left breast - but her lymph nodes felt very normal - a good sign.  Her cells are poorly differentiated - but no vascular invasion seen - another good sign.  You were also right about the MRI.  Our surgeon is not convinced that the entire 6cm area seen as possible tumor is in fact diseased.  Similar areas on the right breast are normal.  We will do an additional MRI-guided biopsy - currently scheduled for Nov.5th - at the margins of the suspicious area to see if they might be fibrocystic or glandular.  She looked at the MRI's with a radiologist and there is a good chance of this.  Right now we are Stage 1 clinically - possibly Stage 2.  No signs of metastisis so far.  Grade 3 (not sure what that means).  I feel like pinching myself - we were giddy and we had just left a hospital for a diagnosis that is still breast cancer.  Crazy but it's like you said - we see the path ahead again.  Thank you so much for the encouragement.

Reply
PJ Hamel, Health Guide
10/23/09 4:26pm

Well, that sounds excellent (if you can apply that term to cancer!) Really. If her lymph nodes are clear, I think she'd probably be a definite stage I. In which case she could hopefully avoid chemo, though the "poorly differentiated" and grade 3 (which is a sign of aggressiveness) might point her in that direction, as a "just in case" measure. When/if you get to the point of deciding about chemo, ask if she can have the Oncotype DX test, which gives a good indication of how effective it might be, and is a helpful way to make the chemo decision, when it's unclear whether it's necessary. Also - be prepared. You're both going to be called no to make an awful oot of tough decisions. Funny, but oncologists and cancer surgeons always give you so many choices, when what you REALLY want is for them to tell you what to do! Hey, have a good weekend - PJH

Reply
fearful of doctors, Community Member
10/28/09 2:52pm

hope you dont mind if i send this.  I have been following your notes, prayerfully, for you and your wife.  I Had my biopsy today and am sitting here with the ice pack, while typing. i was overjoyed to get your last message. you have been on a rollercoaster ride so far.  your wife is so lucky to have you.  My husband has to be gone alot, so i am alone today. Someone has to pay  the bills. I will continue to pray for your wife and all of those women that i have been sitting in the clinic with, waiting fearfully. you are in my prayers.  please pray for me.Smile 

Reply
PJ Hamel, Health Guide
10/28/09 5:48pm

God will give you strength - believe it. PJH

Reply
Allen, Community Member
11/ 3/09 8:23pm

Trying so hard to believe it.  I keep hugging her tighter...visualizing a healing.  Should have more news Friday.  I will take that strength.

Reply
Allen, Community Member
11/ 3/09 8:20pm

Hope your biopsy went well.  We are in a very strange limbo state since our appointment with the surgeon...waiting for our biopsy on Thursday.  My mind plays tricks...maybe our first biopsy was a mistake.  I'm hoping so much for good news...moreso every day and fearful of what we'll find out.  Am praying for you too.  Thankfully my boss understands and I have been able to stay close to home since all of this happened. 

Reply
PJ Hamel, Health Guide
11/ 3/09 9:20pm

So Allen, you've got probably another week to wait - I'd doubt they'd give you the biopsy results right on the spot, right? The process of developing a diagnosis can seem to take forever... it's a relief to finally get into active treatment. So hang in there - you're stronger than you know. And I'm glad you've got an understanding boss... PJH

Reply
Allen, Community Member
11/ 3/09 9:50pm

You're right - better to get ready to wait another week.  It does seem like an eternity.  I keep wishing for the time "before" the "c" word.  Have a hard time accepting our new reality.  I tend to be a bit OCD so the mere thought of circulating cancer cells in my loved one's body makes me a little crazy.  It's so exhausting to keep behaving as normal as possible for our son and friends.  I appreciate the encouragement. 

Reply
PJ Hamel, Health Guide
11/ 3/09 10:09pm

Time heals - believe it or not, you get used to this new reality, and you gradually settle back into life. Life won't be the same - it'll hopefully be better, as you're seeing how very precious it is. Cancer can change your life - if you let it. Thanks for staying in touch, Allen- PJH

Reply
Allen, Community Member
11/ 9/09 12:56pm

My wife just got a phone call from her surgeon with the biopsy results.  It wasn't the news we wanted.  The biopsy found microinvasions of DCIS radiating out from the tumor in a 7cm area of her left breast - but the good news was it looks like we've caught this early - Stage 1 or 2.  Our surgeon said that it will have to be a mastectomy - not lumpectomy.  My wife sounded surprisingly good on the phone.  We have an appointment with the plastic surgeon tomorrow at 9am.  The surgeon said we could wait until after Thanksgiving but we're going to say we're willing to do earlier if possible.  I would have gotten more details from the surgeon but I'm in a back seat at the moment - still trying to be as helpful as I can.  My wife's personality is more one of trusting the surgeon and not needing all the specifics.  Feel numb after days of waiting - but relieved to have news even if it wasn't what we wanted. 

Reply
PJ Hamel, Health Guide
11/ 9/09 3:03pm

Well, still, Allen - DCIS is totally curable. In fact, I was reading some research yesterday that said doctors have just about decided to downgrade DCIS from cancer - not call it cancer, call it a "condition." So I think the mastecotmy is the right choice, just because the lumpectomy might not give her the cosmetic results she'd like. So onward and upward - I think things are (pretty much) going your way! PJH

Reply
Allen, Community Member
11/ 9/09 3:08pm

Thanks for getting back so quickly.  It sounds like the 1.7cm tumor is the only part that is invasive ductal carcinoma.  She said we would have to wait until the surgery and sentinel node biopsy to find out about radiation and chemo.  Now I'm wondering if we should remove the right breast too - cystic changes there are apparently benign.  And if we should go for reconstruction...

Reply
PJ Hamel, Health Guide
11/ 9/09 4:22pm

She's right, you still need more information till you decide on chemo/radiation.

 

I had a similar diagnosis to your wife, as far as tumor size; and with invasive lobular, I have a greater chance of it appearing in the other breast. I chose a lumpecotmy; when the cancer turned out to be too widespread, I had a mastectomy, and reconstruction. I left the other breast alone.

 

Only you guys can decide how worried you'll be about a new cancer in the other breast (it wouldn't be a recurrence - it would be a new cancer). But for me, I figured, IF I get a new cancer - think how much farther along the treatment will be! I'm glad I kept my breast - 8 years out, it's nice to have one that still feels natural (rather than stiff, numb, tingly).

 

Lots of decisions coming up, Allen. Stay in touch... PJH

Reply
Allen, Community Member
11/10/09 9:01pm

Rough emotional day - feel like someone has been pummeling us.  We met with the plastic surgeon.  Dry, clipped, unemotional...sure he has to be.  He recommends a saline implant - tissue transfer too dangerous given my wife's previous deep vein thrombosis after a double knee replacement.  My wife is tempted to not have reconstruction - why reconstruct something that will never replace the real thing?  Also she was small breasted until breast feeding our whopping 9 pound son for over a year.  I'm worried she isn't really thinking about how unbalanced/inconvenient it will be...she's more "devil may care." 

 

I'm encouraging her to have surgery ASAP, she was thinking of doing mastectomy after Thanksgiving.  I want her just to focus on herself right now.  Lots of tears today - mourning the impending loss of her breast.  Also wondering about removal of the right breast prophylactically since she has been diagnosed with DCIS/IDC in left breast.  The web-surfing I've been doing can get to be very scary - like a black hole emotionally sucking me down. 

 

I feel badly for my son...he's very worried too.  Now I'm dreading the sentinel node biopsy and what we'll find out.  Just trying to breathe tonight.  Trying to work at my job...but not any where near my normal focus/productivity.  I've always completely concentrated on my job - very demanding.  Now I'm so distracted.  Sorry for so much whining.  I know it will get better...just not there yet.  

Reply
Allen, Community Member
11/23/09 9:52pm

Surgery is scheduled for Monday the 30th.  We were encouraged by our pre-surgery appointment.  Still no signs of vascular invasion, Stage 2 IDC and microinvasive DCIS.  Think we're doing as well as expected - definite roller coaster of emotions.  I have a hard time waiting - feel like I should be doing something to help my wife.  Praying for good news on the sentinel node biopsy.  Any advice for the week before/day of surgery?

 

Happy Thanksgiving to all!  I will be giving thanks more than I ever could have imagined for my beautiful wife. 

Reply
PJ Hamel, Health Guide
11/23/09 10:43pm

Good, Allen - sounds like things are going as well as could be expected at this point. Re: mastectomy - have you read our 10 Insider Tips? I think this will be helpful to both you and your wife. I'll be thinking of both of you next Monday - and I hope you have a good, thankful (as you say) Thanksgiving... Remember, we're here for you. PJH

Reply
Allen, Community Member
12/ 2/09 11:11pm

Hello PJ.  The surgery went very well - thanks for the reminder about the Insider Tips.  My wife had 3 sentinel nodes removed and they all looked fine.  I understand we won't know for sure until our follow up visit and the pathology is complete.  I spent the night with her in the hospital and we were home 20 hours after surgery!  I'm doing fine with the drain bottles - roughest part for my wife was seeing her 9" scar and caved in breast.  Got a good night's sleep last night and took an hour walk today.  Watching lots of movies, doing her exercises.  Her temp was 99.8 tonight but I'm thinking it may be because she just had some coffee.  Incision looks fine.  Giving thanks for the news on the sentinel nodes.  We meet with our plastic surgeon next Tuesday and hopefully will remove one drain then.  Want to make sure I ask the right questions when we get complete path report.  Hope you had a good Thanksgiving.   

Reply
PJ Hamel, Health Guide
12/ 3/09 4:49am

So far, so good, Allen. Let's hope those nodes are negative - and sounds like they are. It's definitely a shock seeing your flat chest - a REAL shock. But that's why reconstruction is so cool - it really does help you move on, and not be emotionally flattened all over again every time you see your self in the mirror. Tell her one of the hard parts is over - and if no chemo, she could already be on the home stretch of treatment. Be well - both of you. And make sure you go to the surgeon with a list of quesitons, so you don't forget anything, OK? PJH

Reply
Allen, Community Member
12/ 3/09 10:49pm

Will do.  Am glad we didn't take the other breast even with all the worries.  We're hearing good things about the gummy implant.  Do you think it's the way to go?

Reply
PJ Hamel, Health Guide
12/ 4/09 6:14am

I have a friend with the new implants (double), and she loves them. They definitely look good, very natural (with clothes on anyway - we're not THAT close!). And I've read good things about how stable they are. So yes, I'd say that's a good choice. I hope things continue on the upswing here, Allen - have a great weekend! PJH

Reply
Allen, Community Member
12/ 9/09 11:34am

My wife is healing well - yesterday we had one port removed.  She's doing arm exercises pain-free and only took vicodin for four days.   We just got a call from the surgeon saying the 3 sentinel nodes are clear but they found one cancer cell in one node - she said they call it "biopsy debris" rather than a sign of cancer in the node. Great news.  But then she was surprised that the cancer is not estrogen sensitive and she thinks the oncologist will recommend a light course of chemo.  I've seen on the internet that having estrogen insensitive breast cancer increases the risk of reoccurrence and is often more difficult to treat.  I felt like everything was going so great and now I'm obsessing/worrying about this news...worried about a reoccurrence in the other breast and the difficult to treat part.  Such a roller coaster!!  Would appreciate any help in putting this in perspective. 

Reply
PJ Hamel, Health Guide
12/ 9/09 5:31pm

Allen, she can't have a recurrence in the other breast - only a new cancer in the other breast, so there's one thing less to worry about.The metastasis would be elsewhere in her body; but since it hasn't spread to her nodes, you're in good shape there.

 

If she has triple negative cancer (not hormone-receptive; not HER2-neu positive - did they give you the results of the HER2 test yet?), then she wouldn't take any long-term drug therapy. And yes, the cancer would be more likely to recur than other cancers, especially in the first 3 years. Once she hits the 5-year mark, though, risk of recurrence is the same as it is for any survivor. On the other hand, cancers that aren't hormone-receptive often respond better to chemo, so that's good.

 

Hope this makes you feel a little better - PJH

Reply
Allen, Community Member
12/ 9/09 5:37pm

Don't know about the HER2 test but it's on my list of questions for when we meet in person.  What worries me is the elevated risk of new cancer in the remaining breast.  I know my wife won't want to hear that so I'm even worried about asking about it in front of her.  Hard to accept tonight when she is feeling and looking so much better from the mastectomy. 

Reply
PJ Hamel, Health Guide
12/ 9/09 5:49pm

Allen, I haven't heard that hormone-negative cancer puts you at elevated risk of a new cancer in the other breast - this is a new one for me. Be sure to clarify with the oncologist, OK? PJH

Reply
Allen, Community Member
12/ 9/09 6:10pm

I haven't seen that either.  I think what I'm feeling is the shock of the word "recurrence."  I'm so happy with the mastectomy going well, etc. that I want that finality of "it's not coming back."  Hard to wrap my mind around all the percentages right now.  Heading out for a nice long walk on my way home...I usually swim but I haven't been able to get back to that yet.  Nothing easy about all this.   Will try to give thanks for today.

Reply
PJ Hamel, Health Guide
12/ 9/09 7:28pm

Good thought, Allen - try to approach each day as a new gift. Sounds sappy, but it totally works. And you know what? Only a tiny percentage of women with breast cancer can say "It's not coming back." We're all at risk, for the rest of our lives. But time passes, and you're healthy, and the fear goes away... trust me. Time heals. And it'll heal both of you equally. PJH

Reply
Allen, Community Member
1/ 1/10 12:51pm

Happy New Year PJ!  Hope the holidays have treated you and yours well.  We're starting "dose dense" chemo on Tuesday the 5th.  Treatments every 2 weeks - 8 treatments total over 14 weeks. First four treatments with adriamycin, and second four with taxol.  The tumor was 2.2 cm with precursor DCIS lesions in less than 25% of tumor mass.  2 sentinel nodes came back clear, and the third node had one "rogue" cell which and is still considered negative.  She is triple negative hence the chemo - no radiation. We are worried about side effects - numbness, tingling and heart risk.  We were told that with chemo the risk of recurrence is below 10%.  Still having a hard time with worries about the future.  We're more in love than ever - which is a blessing.  Blessings to you and your family.  

Reply
PJ Hamel, Health Guide
1/ 1/10 1:28pm

"More in love than ever" - see, some good can come of this. It's hard not to worry, but try to expect the best. Heart issues are rare; tingling not so rare, but still less than half wind up with it. She has a 90% chance of a great outcome - so look at it as glass half full, OK? Thanks for staying in touch - and best of luck (to you both) with the chemo. Please be sure to read our chemo series - can't do a link here due to Internet issues, but search "chemo ready set" on this site and you should find the post you need. 

 

Blessings to you both, Allen - PJH

Reply
Allen, Community Member
1/ 9/10 9:21pm

Hi PJ - It has been quite a week.  The chemo day, Tuesday, seemed to go on forever waiting, waiting, waiting. Finally at 4:30 the Adriamycin/Cytoxan infusion started.  Frightening but fortunately no side effects.  With the steroids my wife was cheerful and energetic - now on day four she is depressed and exhausted, spending most of the day in bed.  I'm intimidated by the "long haul."  I'm pampering her over the weekend but feel bad that she's alone during the week when I work.  Any advice on dealing with the day to day stress would be appreciated.  No temp, or mouth sores.  I'm making sure she drinks plenty of water.  My mom's birthday is today - she passed away the first week my wife was diagnosed.  Praying for strength and faith.  God bless. 

Reply
PJ Hamel, Health Guide
1/ 9/10 9:36pm

Allen, it's natural your wife will have her ups and downs, so remember - however she feels, it'll change. Some days good, some days challenging, but nothing lasts forever. You'll soon discover a pattern to the chemo treatments, too; you'll be able to say "days 1, 2, 3, good; day 4, tired and depressed; day 5, a bit nauseous; day 6, 7, 8, 9, good..." Keep a written log, see if a pattern starts to develop so you can be prepared, OK?

 

If you're talking about her dealing with the say-to-day stress, does she work? If she has a job, it's a wonderful antidote for chemo - it makes you feel normal, and takes your mind off your problems. I used to have chemo on Friday, recover over the weekend, then back at it Monday morning - working was a huge godsend to me.

 

If she doesn't work, she should try to keep busy by setting herself some tasks - perhaps doing stuff around the house she hadn't quite gotten around to. Putting pictures in order (digital or albums), figuring out Facebook, anything to keep her busy. There's nothing worse than sitting around, doing nothing, waiting to feel bad from chemo. Exercise, both mental and physical, are imperative. Action. Busy-ness. Not exercising at all makes you feel awful, and MUCH moe tired than if you'd simply walked, even just around the house and yard. So pampering is OK up to a point; but don't overdo it, OK? Millinos of women have done this, and gotten through it; she will, too. You'll both find your rhythm soon, trust me.

 

I'm sorry you're having to deal with all these life crises at once; I'm sure you miss your mom, now more than ever. Keep praying; you'll be strong, you both will. I'm sure of it. Peace - PJH

Reply
Allen, Community Member
1/ 9/10 10:30pm

Thanks for being there, PJ.  She doesn't work now - was layed off just as her dad came to live with us which was a blessing as she was doing exhausting juggling.  He has definitely been a full-time job between his 24/7 care, hospital visits, selling his house.  She suffers from depression but is grateful to have gotten care there in recent years.  Appreciate the advice.  She's someone who takes care of everyone else - now she needs to take care of herself more than ever.  I believe she can do it.  Have a good night.

Reply
PJ Hamel, Health Guide
1/10/10 1:29pm

Trust me, I know - it's very difficut for the caregiver to become the "caregivee." I hope that gradually, she learns it's good to say "Please help me" and "thank you" - two phrases many women are absolutely terrible about uttering. Being taken care of; NOT taking care of others for awhile - it's not negative. It's saying "I'm human." And it's a generous gift to those who want to help, of whom I'm sure there are many - you chief of all.

 

I hope her depression medication keeps doing its job; tough to be battling on that front, too. ONe day at a time - that's the way to handle it. PJH

Reply
anna, Community Member
8/28/12 6:54pm

hey allen you know i understand excatly how you feel my mom was diagnosed this month with stage 2 breast cancer 6cm its the worst feeling to get and more because she was too scared t go get checked from the beginning shes not a resident or citizen and has no insurance and didnt find any meaning of why to go to the doctor because of her immigration statues but the staff at vmc is doing a lot for her she is also going to get a misectomy ill be praying for your wife as i do for my mother

 

Reply
PJ Hamel, Health Guide
8/28/12 9:40pm

Anna, we're sending verybest wishes to your mom and to you, in hope and faith that all will go well with her surgery and any further treatment. PJH

Reply
pukey, Community Member
11/20/09 11:38am

you should consider having genetic testing done to determine whether your wife's cancer is BRCA1 or BRCA2 positive.  If so, she has an elevated risk of cancer developing elsewhere.  Some BRCA positive women elect to have a double mastectomy.  If not, the chances of another cancer developing in the other breast are much closer to normal.  This is something she should discuss with her oncologist and surgeon.

Reply
PJ Hamel, Health Guide
12/ 3/09 4:46am

Unless she has reason to do genetic testing, it probably wouldn't be necessary. There are a series of factors that would suggest testing (Ashkenazi Jewish descent, certain number of close family members with breast cancer, etc.); but other than that, it's usually not done. Thanks for your suggestion, though - it's a good one for some women. PJH

Reply
Sherri, Community Member
2/ 3/10 3:27pm

Hi Allen, not sure if you still log on here but just read about what you and your wife are going through.  I will keep you both in my prayers.  As a word of encouragement, I wanted to let you know that your wife's story sounds incredibly familiar to my own. Similiar tumor size and diagnosis.  I also had the mastectomy although I did a double and had reconstruction.  I did chemo as advised and while it wasn't fun I tolerated it fine.  It has now been 6 years and I am in great health.  No long term problems from treatments at all.  You sound so supportive and I am sure your wife is grateful.  I truly believe my diagnosis and treatment was harder on my husband emotionally than it was on me and I think the same will probably be true for you.  The hair loss and getting used to the scars was very difficult for me in the beginning but the hair all grew back and I can honestly say I have had a complete recovery and live a very normal active life.  I hope and pray your wife has just as successful of a recovery.  Be strong and know this is just a bump in the road of life that will hopefully make you both stronger.

Reply
Allen, Community Member
2/ 3/10 3:36pm

Sherri - You are so kind to share your encouraging results.  We're 3 treatments into chemo - so far so good.  Some rash, fatigue but nothing major.  The scar from mastectomy looks depressing, the strange expander looks so wierd neither one of us can ever imagine it looking near normal - kind of funny if it wasn't so sad.  I'm hanging on to an outcome like yours - hoping and praying for it with body and soul which is the hard part.  Like your husband it is hard - we're not the ones going through it but we do experience everything through you.  I won't lie - it was very rough for us to see my wife lose her hair last week.  I insisted on giving her a trim with an electric razor - was the right thing because it "neatened" up the scraggly hairs that made her look so sick.  We're not into wigs - more the bald is beautiful fierce breast cancer survivor pride is what we're aiming for.  My prayers for your continued good news!

Reply
PJ Hamel, Health Guide
2/ 3/10 7:41pm

Allen, good to hear from you again. I'm glad your wife is tolerating the treatments fairly well. Losing your hair is HARD; so hard... but it seems once you get past that obstacle, plus the first few treatments, you can kind of pull your socks up and continue down the path with less dread. I, too, did the "bald is beautiful" thing - be absolutely sure to get some pictures, because you'll both find her bare head is quite beautiful, and you'll most probably never see her like this again.

 

Here's hoping for continued challenging, but smooth sailing - for both of you. Best- PJH

Reply
Allen, Community Member
2/15/10 2:07pm

Having a bad day...gripped by the worries.  I've been reading blogs by women with triple negative breast cancer like my wife's and I'm reading so much about recurrence as Stage IV, and the difficulty in treating triple negative breast cancer.  I was feeling fairly optimistic based on the meeting with our oncologist and feeling that triple negative responds well to chemo.  Now I'm overcome by worry. Tomorrow is treatment four of adriamycine and cytoxin...then we begin four treatments of Taxol.  My wife's father is worse - trip to the ER last week and we've asked for hospice to come to our home.  I kept my wife from going to the hospital...just want her to focus on her own chemo.  Really stressed out today. 

Reply
PJ Hamel, Health Guide
2/15/10 2:28pm

Allen, I'm sorry you're having a bad day. Worry is awful, and eviscerating. It's also an emotion - thus hard to control, but oftentimes tending towards "the worst that can happen." The majority of women with triple negative breast cancer go on to lead healthy lives. Keep that fact in mind, and try to use it to fight your anxiety. I know you both have a lot to deal with right now, but think of this as the long, dark tunnel from which you'll emerge in a matter of a couple of months, right? A year from now, how will you feel? A lot better, I'll bet. How about 6 months from now? 3 months from now? You're getting there; hang on, things WILL be better soon. PJH

Reply
Allen, Community Member
2/15/10 2:32pm

Appreciate it PJ.  I find that reading blogs, etc. is a black hole that I can't get out of once I start.  We're doing the chemo - why get diverted by worries, distractions?  Get through ten more weeks of chemo and don't worry about trials, recurrence, etc.  Of course easier said than done.  Will hang in - thanks.

Reply
Allen, Community Member
3/ 8/10 4:02pm

We're one week into Taxol regimen - over the halfway point and done thank goodness with AC and with 3 more Taxol infusions to go.  I'm hoping this is bottom - my wife is very anemic and will need a blood transfusion next week if her red blood cells go any lower.  She's very weak, gets out of breath just going up one flight of stairs - our onc said it's like she 's on a 9,000' mountain.  She's very pale, her eyes have deep purple rings around them...so rough to see her that way.  Have been trying to help her eat iron-rich foods - the onc said it won't make much difference but the chemo nurse said it can help.  She has new sharp pains on the ends of her fingers, toes and knees from the Taxol but that has subsided.  We're hanging tough - chemo is not for the faint of heart, that is for sure.   

Reply
PJ Hamel, Health Guide
3/ 8/10 8:13pm

You've got that right, Allen. And from what I can see, neither of you is "faint of heart," thank God. Every step you both take is a step closer to being through - you can do this, I know you can. Imagine so many of us here holding out our hands, helping you over the rough spots. I'm sending you good karma and healing energy - all will be well. PJH

Reply
Allen, Community Member
3/ 8/10 11:17pm

Thank you so much, PJ.  I will go to bed thinking of all those hands holding us up. 

Reply
Allen, Community Member
3/24/10 6:50pm

Just wanted you to know that your prayers - and Mine! - were answered last week.  My wife held her own and had her second taxol treatment without a transfusion.  The pain was easier with this one - still very fatigued with flu-like symptoms, but she's feeling better this week.  The end is in sight.  Tuesday our next to the last chemo!!!  I still have good days and bad with worries/depression.  Everything has changed for sure.  But I'm claiming a future with breast cancer in the rear view mirror with all my might.  Best to you, PJ.

Reply
PJ Hamel, Health Guide
3/24/10 6:59pm

Well, Allen - back in October, I'll bet you weren't imagining yourself at this point - you and your wife, nearly through treatment. It's a long, hard slog, but you're nearly there! Congratulations. And yes, cancer will be in the rearview mirror and receding farther and farther every day. Never mind that "objects in the mirror are closer than you think" - this WILL be behind you. You'll never forget the experience. But the pain will fade, and you'll realize how strong it's made both of you. You've faced cancer together - and conquered it. Be well - PJH

Reply
Allen, Community Member
4/15/10 11:24am

Tuesday was our graduation day.  Eighth and last taxol/chemo treatment.  My wife's blood iron levels continue to go up - and fortunately the symptoms are not as severe as the adriamycin and cytoxin.  Mainly some numbness and a burning sensation on the souls of her feet.  Now it's all about staying mentally strong and trying to feel normal again without the constant dread of bad news that began last October.  My wife is reading Norman Vincent Peale's "The Power of Positive Thinking"...and the spring weather is helping.  Eight weeks to reconstruction.  Hope this finds you well. 

Reply
PJ Hamel, Health Guide
4/15/10 2:28pm

Wow... Banner day for you and your wife, Allen! Just think of all you've been through together since last fall. And here you are at a big milestone. Kudos to her (and you) for staying the course – and working to stay positive. I hope she continues to feel better as the days go by, and that she likes her new hair... something else to look forward to. Peace- PJH

Reply
Allen, Community Member
11/16/10 12:27pm

Hi PJ - I've been meaning to write for some time.  We just passed our one year survivor anniversary!  My wife has cute short hair - so soft.  Her spirits are up and energy returning.  We went reconstruction, our six month check up.  All good.  Just hit our first bump in the road and I've got that same old dread rising up - lump in my throat and sweaty brow.  The onc's assistant just called to say my wife has a 5.1 CEA tumor marker reading.  Apparently 0-5 is considered a normal range.  She has a sinus infection she is going to the doctor for today - I've read that something like that can cause the numbers to go up and they're notoriously unreliable and unproven to improve outcome.  My darkest fear is metastasis since she's triple negative...  She's going back today for a new blood draw.  Any advice and information to put this in perspective would be so appreciated.  I'm hoping you are doing well too!

Reply
PJ Hamel, Health Guide
11/16/10 4:49pm

Hi Allen - I've just written a post on tumor markers (not yet published); many doctors don't track them, as they're SO unreliable. A perfectly healthy person might exhibit elevated tumor markers; someone with rampant cancer might show none. And yes, other issues can cause tumor markers to rise. Add to that the CEA test is pretty fuzzy anyway, and I'd say try not to stress too much - this is probably a wacky reading that will bounce around, if she continues to track it. The general consensus seems to be that tumor markers are tracked if you've already had a metastasis; or if there's reason to think your chance of recurrence is VERY high (e.g., BRCA gene carrier). But other than that - it's definitely not a given that tumor markers will be any help in identifying a recurrence, and they're guaranteed to produce stress and angst. Anyway - congrats on the 1-year anniversary! PJH

Reply
Allen, Community Member
11/16/10 5:05pm

Bless you, PJ.  So great to hear from you... I know you've been told this many, many times before but you are VERY important to me.  Just knowing that you're out there...a survivor too...offering sage advice.  I deeply appreciate it.  My wife feels good, and we're celebrating my son's just passing the bar and my wife's anniversary...and her dad's 85th.  We're trying to go forward and live life...but it's hard sometimes to leave the worries.  You helped me today.  Thank you.

Reply
PJ Hamel, Health Guide
11/16/10 5:59pm

Allen, you helped me today, too. In this frenetic time of year, when I'm trying to keep all the balls in the air at once (I'm in online retail at my "day job"), you've reminded me how worthwhile it is to connect with people like you, people I can reach out and help. I feel like, "Take my hand - we'll do this together." There's strength in numbers, and this online community, of which we're both a part, proves it. The best to you, and be well, both of you. And congrats to your son! PJ

Reply
Allen, Community Member
11/22/10 12:21pm

So it's a week later - no word back yet about our second CEA reading.  My wife has her first fever since chemo.  Very slight - just over 100 - but she's achy and tired and has that sweaty, flu-feeling.  So I'm figuring she has a viral infection in addition to the sinus infection which we're treating with antibiotic.  I'm trying to stay calm - but of course I'm nervous that it's not your usual cold, etc.  I'm sure this paranoia is common after going through BC. 

Reply
Phyllis Johnson, Health Guide
11/16/10 7:10pm

To add on to PJ's reassurance about tumor markers, I wanted to mention that in the next few years, you will probably hit lots of bumps in the road.  Your wife's doctors are going to investigate every twinge.  I used to joke that if my little toe hurt, my doctors ordered an MRI to check for little toe mets from my breast cancer.  Of course, every time I worry and get anxious until I get the word that all is OK.  So far, twelve and a half years out from a very aggressive Stage IIIB cancer, I've wasted a lot of worry.  Of course, I can't promise that your wife will have the same experience, but it helps to see all these tests as part of a life-long marathon.  When we first finish treatment, we want to think that we can put cancer behind us, but the threat of it is always there.  The best way I've found to deal with it is to stay busy and focus on today.  It sounds like you have had some wonderful celebrations in this last year.  Congratulations!

Reply
Allen, Community Member
11/16/10 7:38pm

Thanks for the "long view" Phyllis...and for stressing the importance of seeing this in context.  Mixed in with the pain of all this is the undeniable sweetness that comes from appreciating each and every day.  I'll try to exhale tonight as we begin our wait for the next round of test results.  It helps to see this as one of many bumps along the way.  I've already shared PJ's email with my wife - and will share this one too.  Best wishes to you.

Reply
Allen, Community Member
11/22/10 12:15pm

So it's a week later - no word back yet about our second CEA reading.  My wife has her first fever since chemo.  Very slight - just over 100 - but she's achy and tired and has that sweaty, flu-feeling.  So I'm figuring she has a viral infection in addition to the sinus infection which we're treating with antibiotic.  I'm trying to stay calm - but of course I'm nervous that it's not your usual cold, etc.  I'm sure this paranoia is common after going through BC. 

Reply
PJ Hamel, Health Guide
11/22/10 12:31pm

Allen, no way are cold/flu symptoms a sign of breast cancer, or lung cancer, for that matter. Take deeeeep breaths... Hopefully by Thanksgiving you will have gotten the results, they'll be good, and you can enjoy a restful, peaceful day, with lots of thanks-giving - OK? Take care, both of you - I'm sending you my best. PJH

Reply
Allen, Community Member
11/22/10 12:35pm

Breathing deeeeeeep breaths...good advice.  Best to you and yours for Thanksgiving, PJ. 

Reply
Allen, Community Member
12/ 1/10 8:51pm

Hi PJ - Thanksgiving went very well with my family - hopefully the same for you and yours.  Just found out that my wife's CEA reading is still slightly elevated.  5.2 instead of 5.1.  Our onc wants her to have a colonoscopy - apparently a polyp could cause this type of slightly elevated reading.  Smoking can do it too - but she's not a smoker.  Same old stress when the phone rang - but we're trying to put your sage advice into practice.  Her colonoscopy is scheduled for Jan.10th.  We're trying to take it step by step - but still stressed with this hanging over us during the holidays.  In my heart I believe it's just one of those flukey readings - but I'm still worried.  Best to you.

Reply
PJ Hamel, Health Guide
12/ 1/10 8:58pm

Allen, your stress will gradually abate over the next few weeks - you simply can't sustain high stress levels for very long; you kind of get dulled to it. If they were truly worried, do you think they'd make her wait 6 weeks for a colonoscopy? I doubt it... As I think I said before, many oncos don't even track tumor markers, as they're so unreliable and flukey. So - enjoy each day, do your best, go to sleep without guilt, and get up the next day and do it all again. Live in the moment, not in fear of what the future might bring. Easy to say, hard to do - but I know you both will try. Take care- PJ

Reply
Allen, Community Member
12/ 1/10 9:03pm

Will do my best - I kind of wish we weren't worrying about the markers - our onc said he doesn't like them.  I think he is forced to use them because of reimbursement/insurance/legal guidelines?  That said, I appreciate their looking out for us...and your advice.

Reply
PJ Hamel, Health Guide
12/ 1/10 9:48pm

That sounds like a very weird reason to track markers... My onco dismisses them as useless; he's a world-class researcher as well as doctor, and I totally trust what he says. Alas... sorry you're stuck in this angst-inducing situation, Allen.

Reply
Allen, Community Member
1/25/11 5:40pm

Just checking in to say happy new year.  In the past few weeks we've come through 6mo. mri/mammo and all good.  My wife had the colonoscopy - that was all good too.  We haven't heard anything back from our onc about the slightly elevated CEA marker but are feeling pretty good.  It's been a year since we started chemo so we feel like we've come a long way.  Fighting stress/anxiety is still a challenge but we're working on it.  Hope you're well too. 

Reply
PJ Hamel, Health Guide
1/25/11 6:29pm

Thanks for checking in, Allen. SO good to hear your wife's come through her tests with flying colors, and that the doctor isn't apparently too worried about those marker scores. Keep working on that anxiety; remember, the odds are definitely in your favor, and worry accomplishes absolutely nothing. As time passes, you'll find yourselves relaxing more and more; believing more and more deeply that the cancer is gone, and won't return. Time heals, it truly does. In the meantime - keep on keepin' on... PJH

Reply
Allen, Community Member
2/ 2/11 8:57pm

Just found out my wife has a PET/CT scan on Friday - she has known about it for 2 weeks but was keeping it a secret because she knows how nervous I get and I had a big project at work.  The onc's office said it's just to "close the loop" on her slightly elevated marker reading since the colonoscopy was clear.  I know I'm not supposed to suddenly descend into fears and worries but I still struggle when I find out about each new test.  I'll be there on Friday - we should know results by next Tuesday/Wednesday.  Will feel much better when we get through this. 

Reply
PJ Hamel, Health Guide
2/ 2/11 9:06pm

Another rock in the path, Allen - "Step over it - the path will still be there." I'm sure the test is just what the docs say - closing the loop. Things have gone well for you both so far - your goal, for the next week, is to assume they'll continue that way, OK? Let us know how the tests go.

 

And FYI - we all go through these tests periodically, when we have an ache or pain, markers are elevated, unexplained headaches... It's scary, but it gets easier and easier as the years go by. You can do this! Take care- PJH

Reply
Allen, Community Member
2/ 8/11 2:07pm

Hi PJ - not having a good day.  We just got back PET/CT test results a few hours ago - they saw "something" on my wife's liver and want her to go back Friday for an MRI of her liver.  I think the words were "they don't think it's anything but want to make sure"  and that once they start this process they have to keep checking to make sure all is OK.  They also saw something on her thyroid - she had a sonogram-guided biopsy of that last summer - it's enlarged - and it came back negative so we're forwarding those results.    

 

My wife is very upset and worried - same with me but we're both trying to be brave.  The worry is excrutiating and I've read so many scary things about liver metastisis.  At the same time I've read lots about benign liver lesions/hemangiomas, etc.  So we've got to wait until next Tuesday or so for the MRI results.  Ughhhhhhhhhh!!  Not the call we wanted...

Reply
PJ Hamel, Health Guide
2/ 8/11 5:17pm

Allen, they're being super-careful; you know that. And thank God they are. It sounds like your wife is getting extremely good care... better to explore what this might be and then be able to dismiss it, than to dismiss and be sorry later. Trust me, we've all been through these "we don't think it's anything but..." moments - and almost always, they're right: it's nothing. So - keep busy, do whatever you've done in the past to get through these tough times... And believe that, as before, things will turn out well for you. And let us know next Tuesday, OK? Until then - I'll be thinking of you both. PJ

Reply
Allen, Community Member
2/ 8/11 7:27pm

I really appreciate it, PJ.  We've bucked up - after rereading your posts, surfing the net (always dangerous for my psyche) - I've come up with a new saying.  "It isn't until it is."  They are being extremely careful.  That's their job.  For the time being I'm doing my very best to stay positive.  They're trying to rule everything out after the slightly elevated CEA reading.  I'll let you know how it goes next week.  We just worked out together and went out to get a bite.  Good ending to a rough day. 

Reply
Phyllis Johnson, Health Guide
2/ 8/11 7:57pm

Allen, I can't tell you what the outcome of these tests will be.  I can tell you that my husband and I have been where you are way too many times.  As a Stage IIIB IBC patient who was likely to recur, I soon learned that my doctors scheduled MRI's, scans, blood work, and biopsies if any thing looked the least bit off.  I had way too many scares, but fortunately at 13 years out, so far everything has checked out A-OK (as one of my docs was fond of saying).  Of course, every time we tend to panic; but we gradually got better at waiting.  Staying busy and not going down every "what if" road helps.

Reply
Allen, Community Member
2/ 8/11 8:01pm

Thanks, Phyllis.  That's exactly where we're at.  I feel confident that we'll get through this test too.  Will try to stay busy - we're going to visit some family out of town this weekend.  That should help.  We're hanging tough - no fun but someone's gotta do it! 

Reply
PJ Hamel, Health Guide
2/ 8/11 8:45pm

Food, exercise... and one another. Sounds like a winning combination to me, Allen. Be well- PJ

Reply
Allen, Community Member
2/17/11 9:01pm

Good news on the MRI - the liver is fine.  They saw a thickening of the gallbladder wall that could be a caused by cholesterol.  The report called it "cholecystosis."  I looked it up and looks like it's a benign rarely harmful condition but they want us to check back with the doc who did the colonoscopy.  They also want us to check in with the doc who did her thryoid biopsy (benign) last July.  She'll probably get another sono-guided biopsy next week.  Trying to get off the "testing" merry-go-round where you feel like "they're testing her" so that means "she's sick"!!!  I encouraged her to have a therapeutic massage tomorrow afternoon - she has been feeling chest pressure.  I think it's probably stress and tightness from the mastectomy.  Thanks for your prayers.  So grateful that we made it through this week! 

Reply
Phyllis Johnson, Health Guide
2/18/11 4:57am

I'm delighted to hear this good news.  The massage sounds like a great idea!

Reply
PJ Hamel, Health Guide
2/18/11 5:54am

Excellent, Allen - now you can relax and enjoy your weekend! As you continue to go through these "scares" (and as Phyllis has mentioned, it's a regular occurrence), you get more and more inured to the whole process; it simply loses its ability to terrify you. Sure, you're a bit anxious; but as the months and then years go by, you're just not panicked anymore. The human spirit is wonderfully resilient.

 

I highly recommend a massage - for both of you! Smile Take care- PJ

Reply
Allen, Community Member
7/18/12 5:37pm

Hi PJ - hard to believe more than a year has gone by since my last post.  My wife's condition is pretty much the same.  She has been feeling great, has kept her cute short hair, and we're over two years since the end of her chemo.  Just had her six month checkup - I don't go these days.  Her CEA crept up a tiny bit to 6 something last December at her last visit...they still seem a bit concerned about it but not enough to let us know until this visit.  Getting much better at not getting too stressed...but still waiting/wondering what this week's blood draw reading will be and if they will call us.  I've reread and gained strength from past posts - and am determined to avoid internet surfing about CEA this time.  Hoping this finds you and yours well...and determined to seize the day and the future.   

Reply
PJ Hamel, Health Guide
7/18/12 5:59pm

Allen, this is serendipitous - I was just thinking about you and your wife the other day, wondering how you were both getting on. Healing is a long process, for sure - both physical, and emotional. Gradually, ever so gradually, you'll find the "gorilla in the corner" disappearing. I probably said this before but, believe it or not, there'll be a day when you don't think of cancer first thing in the morning. And then, possibly, a day when you never think of it at all.

 

Please try not to worry about the numbers; my oncologist, who's incredibly well thought of in his field, doesn't even bother with those tests, as they're just too inaccurate, and can so easily show false positives. Try to let it go, OK? Worry is eviscerating; and it doesn't help nor change anything. So recognize it for what it is: an emotion, and a bad one - and try to let go of it.

 

Live in the moment - as you say, carpe diem. Once you get past this next appointment, you can breathe yet another sigh of relief, and soldier on. Take care - and thanks for staying in touch. PJH

Reply
Allen, Community Member
7/18/12 6:13pm

So great hearing from you, too.  Haven't gotten to that "day without cancer" moment yet.  But I can sense it out there, shimmering on the horizon!  Yesterday my wife's ob/gyn said she has lost 10 lbs since her last appointment, has 120/60 blood pressure, and "she doesn't want to even talk about the breast cancer any more...done."  Made my day.

Reply
PJ Hamel, Health Guide
7/18/12 7:10pm

SmileLaughing

Reply
Allen, Community Member
8/ 3/12 4:58pm

Little bit of the the "deja-vu" all over again.  My wife's CEA has crept up to 6.5 and they want to do another Pet Scan.  I know all the right things to say/think...but still can't help getting those knots in the stomach.  I feel bad for my wife because she's the one who has to go in for the tests with all the inevitable questions.  We went through all the same tests a year ago but here we go again... 

Reply
PJ Hamel, Health Guide
8/ 3/12 10:27pm

Allen, I still think those tests are really "jumpy" - as I mentioned, my oncologist doesn't even bother using them, they're wrong so often. Maybe her numbers naturally creep up at this time of year, for another reason - there are other things that drive the numbers up besides cancer cells. So hang in there - you may even get a false-positive PET scan, resulting in yet more tests... Try to believe and feel she's actually OK; keep busy; and put one foot in front of the other. A month from now, you'll be on the straight path again. Take care - PJH

Reply
Allen, Community Member
8/ 5/12 6:02pm

Thanks, PJ.  Trying my best.  Rough weekend...can't seem to get out of the "worries."  We just got back from a week of vacation and it was a great getaway.  Seems harder to deal with the test as it was a shock the day we got back.  We really enjoy the months between tests.  Her PET scan is next Friday afternoon.  Trying to stay postive until then.  Keep reminding myself we've been doing this for a few years...nothing new really with the CEA...it's gone up from 5 to 6 in 2 years.

Reply
PJ Hamel, Health Guide
8/ 5/12 7:44pm

It sounds like you have a super-cautious medical team, Allen. Good in a way, as they may catch anything that's going on a bit earlier; but also tough to deal with, as they'll approach every tiny sign as if there's a good chance it'll be cancer, and have your wife go through all the tests, which means you both go through the emotional roller-coaster. This is the argument against screening mammograms - that they put too many women through too much needless treatment and worry. (Though on the other hand, how much is it worth, in terms of expense and societal anxiety, to find one woman's cancer early? Who can make that call?) 

 

At any rate - hand in there. We're here for you, as always. PJH

Reply
Phyllis Johnson, Health Guide
7/19/12 8:03am

Hi Allen, it is so good to hear from you.  Two years since the end of chemo and feeing good!  I am so pleased.  Stress is part of the post-cancer life, but it all gradually gets better.   If you want to know for sure about the numbers, don't wait for the doctor to call you.  Go ahead and give the office a call and ask if the results are in.  Those blood test numbers can go up and down quite a bit before the doctors get concerned.  They are usually looking for a pattern, not a single result.  For many patients, tumor markers are inaccurate, which is why many doctors either don't take them or just file them away for reference in case of future problems.

Reply
Allen, Community Member
2/14/13 6:01pm

First of all I want to wish you the happiest of Valentine's Days!  My wife has just gone through all her year 3 tests of being poked and prodded and came through with flying colors.  The dreaded CEA number even dipped a little this year and she doesn't have to go through a CTscan.  We do have a little pebble on the path - last night she told me that a tiny cyst showed up moderately enlarged on a transvaginal sono.  Her gyno recommended 2 options - the non-invasive one another sono in 3 months or the more aggressive removal of her ovaries in day surgery.  I'm pretty sure the cyst is benign as our various alarms have turned out so far but I think we're leaning to having the ovaries removed so we don't have to worry any more. Just wanted to get your feedback - and say thanks again for always being there for me.  Taking my lovely lady out to a romantic dinner for two with chocolates in tow and so grateful for every day. Best to you all.

Reply
Phyllis Johnson, Health Guide
2/14/13 8:04pm

Happy Valentine's Day!  Here's to many more years of romantic dinners!  

Of course, you will want to go over all the risks and benefits of both options with your wife's doctor.  When I was in a similar situation about a year after my cancer treatment finished, my doctor and I decided that having my ovary removed was the best course.  (My other ovary had been removed years earlier.)  This type of surgery can usually be done laproscopically, which means a very quick recovery.  Of course, any kind of surgery needs to be carefully considered, but I can tell you from personal experience that if surgery is the best option, it is not usually a difficult procedure.

Reply
Allen, Community Member
2/14/13 6:02pm

Happy Valentine's Day - my note to PJ was meant to be to you as well.

Reply
PJ Hamel, Health Guide
2/15/13 5:16am

Allen, I was just thinking about you both the other day, hoping you were doing well. Healing is a long process, isn't it? The physical healing happens faster than the emotional... but I think you're both getting there. The "gorilla in the corner" becomes more meek, over time. I'm happy for you.

 

As for the cyst - I assume chemo had already put her into menopause, so she wouldn't have to worry about those side effects. That probably makes the decision easier. If it's going to make no difference with how she feels physically, I'd probably opt for removal rather than waiting. I'm sure you guys will come up with a solution together; sounds like you always do.

 

Happy belated Valentine's Day! And, as Phyllis said - many more. Smile PJH

Reply
Phyllis Johnson, Health Guide
12/ 2/10 5:06am

Allen, PJ is right that they wouldn't wait until January for the colonoscopy if they were really worried.  Not too long after my cancer treatment, my doctor took a minor symptom as an excuse to order a colonoscopy.  He said he thought everyone over 50 needed one, but my insurance didn't cover it as a screening test--only for a diagnostic test based on symptoms.  It may be that her doctor is using this elevated marker as a reason to order a test that he thinks ought to be done as basic health care.

Reply
Linda, Community Member
6/29/11 6:22pm

I was just diagnosed with a 7 cm tumor.  I am having a double mastectomy with reconstructive surgery.I too have a lot of fibro-cystic tissue.  Keep your spirit up, it will helpher cope and be supportive.

 

Reply
Phyllis Johnson, Health Guide
6/29/11 6:26pm

Linda, I hope your surgery goes well.  We are here for you as you have questions or just need to "vent."

Reply
Linda, Community Member
6/29/11 6:30pm

Thank you so much!  So many survivors it is so encouranging.  July 17 is surgery date...

 

Reply
Phyllis Johnson, Health Guide
6/30/11 8:19am

Yes, today there are many breast cancer survivors.  I'm 13 years out from diagnosis with an aggressive form of breast cancer.  In fact, this week is the 13 year anniversary of my surgery and discovery that I had 16 positive lymph nodes.  I hope your surgery goes well.  Let us hear how you are doing.

Reply
Linda, Community Member
6/30/11 11:43am

Thank you and congratulations!

 

Reply
Linda, Community Member
6/29/11 6:22pm

I was just diagnosed with a 7 cm tumor.  I am having a double mastectomy with reconstructive surgery.I too have a lot of fibro-cystic tissue.  Keep your spirit up, it will helpher cope and be supportive.

 

Reply
Linda, Community Member
6/29/11 6:26pm

I was just diagnosed with a 7 cm tumor.  I am having a double mastectomy with reconstructive surgery.I too have a lot of fibro-cystic tissue.  Keep your spirit up, it will helpher cope and be supportive.

 

Reply
Answer This

Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.

By Allen, Community Member— Last Modified: 04/03/14, First Published: 10/19/09