I need help deciding the best way to deal with DCIS; I need a clear answer: is DCIS cancer or not?

I understand that compared to the treatment used in the 70's a lumpectomy is not a big deal; my comparison is that surgery plus radiation to treat a mild condition seems draconian and I have no idea where to file the 40% that spontaneously disappear, but I'm still having a difficult wrapping my head around this. I may be advocate of watchful waiting, but please don't treat me as a fool; I am truly in a quandry. I find myself in unfamiliar waters, I am a very decisive person and when faced with a situation I research and make the best decision, but in this case the "experts" are undecided. What is a person supposed to do? You've provided detail, what would you do if this were you and why?

Janice, I'd be a little careful regarding a couple of aspects of your pathology report. If your tumour has a high nuclear grade and is cribriform, these may be indications that it is a tumour that will become invasive. In your situation I, personally, would go with the treatment now rather than later. It is simple and has a very high success rate. I speak from the point of view of one who is nearing the end of nine months of treatment for a breast cancer for which the survival rates are about 50%. Compared to 2 rounds of chemo, mastectomy and 6 weeks of radiation I think the treatment that has been suggested to you is a piece of cake.

 

I am greatly in favour of advocating for yourself, but I think there also comes a time when you have to trust the advice given by your doctors - unless you have reason to think that they lack competence. I wouldn't be taking this sort of chance and maybe putting myself where the treatments are more prolonged and more unpleasant with less favourable outcomes.

 

You did ask for an opinion!!

 

Best wishes

 

Sue

Sue, thank you.  This leads me to another question and I appreciate your answer..btw, my surgeon is out of town and I can't get the answers from her.

How is it that the pathology says that the dcis is solid, cribriform and micropapillary, which the various sources say are low grade, slow growing and less likely to do much of anything, and then couple that with high nuclear grade which, in essence, says the opposite?

 

I am so very confused by the contradictions at every turn.  So what you are saying is that the nuclear grade, regardless of the structure is the determining factor? and not the other way around?  So, even though it's not comedo (or at least it doesn't indicate as such), the high nuclear grade is still significant?

 

I appreciate your help Sue.

Janice

Janice, I wish I could help, I have the same issue; I've been diagnosed with DCIS, same as you, stage 0, actually everything is the same except mine is in the left breast.  The doctor that I go to wants me to have a mastectomy, because he feels this is the only way to get it all (he's also older). After reading everything I certainly don't want a mastectomy and I think a lumpectomy is better, but I feel the same way as you do, it just seems to be such an over-reaction to something that "they" say is no big deal.

 

The reading that I have done on line is so confusing and I don't know what to do!! I read something and it says it's cancer and then it says it isn't and there are people in California who say that it doesn't need to be treated at all!  Now, the first person who answered you said that it can go away by itself!  What should we do??????

 

I don't understand the nuclear grade thing versus the low grade cribiform thing either and like you, I appreciate Sue's response.  Perhaps someone will take your question seriously and help us both out!!!

Renee

Boy, you ask difficult questions!! I couldn't say whether nuclear grade is more significant than the cribriform/micropapillary aspects of your tumour. You are making the discovery, like all of us who have been affected by breast cancer, that this stupid, ugly disease manifests itself in so many different ways for different women that the term "breast cancer" itself can almost be misleading.

 

Have you read this website? I thought it was thorough and easy to understand and may be helpful to you. It's a nuisance when your doctor is away. I wonder if she's at the same conference as my doctor? That's a good sign of her level of expertise.

 

If you decide to go ahead with the treatment, do ask her what her standard is for clear margins as that seems to be important for reducing the risk of recurrence. Some surgeons can be a bit gung-ho and driven by their egoes in aiming for clear margins that I think are too small. My own surgeon, who is the best in Melbourne (Australia), insists on a 1cm margin and I know I found that very reassuring. His success rates speak for themselves. He seems to be more focussed on helping his patients than on how good his peers think he is.

 

Maybe I'm a bit knee-jerk in my reactions, but I know I wanted the cancer out of me and I don't want it to come back. Mastectomy wasn't too bad in terms of pain and recovery, but I could do without the scar and the hard, flat chest - I miss my nice soft squidgy bit when I'm in bed. I'm halfway through 30 radiation treatments and that has been pretty easy - no side effects so far. In fact I'm regaining my former energy levels after finishing chemo 6 weeks ago. And I love my new post-chemo hair! Lucky you not having to go through that.

 

My best advice? Talk common sense to yourself and don't look back once you've made a decision. Keep in touch. I'm happy to "talk" any time.

 

Sue

Sue, bless you!!  Thank you for your note.  I've been sick for a couple of years and have had multiple surgeries; I thought I was finally past this nonsense when I was diagnosed with this!  I guess my reluctance lies in the cancer, not cancer argument, and you are so right, make the decision and go on...similar to the wedding dress selection....once you pick "the" dress, never! look at another one! 

 

Saying all of this I have set a surgery date, it's June 19th, it just that I am sick of Dr.'s hospitals and definitely surgery!, I'm not stupid, it's just that I am feeling a bit beaten down and because I can't get good answers, just more ambiquity, it is driving me a bit nuts!

 

It's my nature to always know as much as I possibly can before moving forward.

 

Renee, it's good to know I'm not alone in this fog!, thank you for your support.

 

I am normally so good at rooting out the answers and that is part of my frustration, not being able to get to the bottoms of this.  My Dr. is supposed to call me when she returns (she's not at a conference, but on vacation in the Mediterrainian (oh, how I wish!).  I'm hoping she'll be able to help me through this morass.

 

Sue, I wish you well, I hope your hair comes in silky, wonderfully manageable and beautiful!!

I'm 25 and was diagnosed with DCIS when I was 24. I had a left breast mastectomy because they were afraid that invasive cancer can be more agressive in younger women. I'm a young, beautiful woman and it felt like a lot to lose but it wasn't. The lack of information around made it hard for me to justify losing my breast but in the end it just wasn't worth the risk. Turns out boobs are overrated anyway :)

 

Jess

Janice, sorry if I came off as putting you down in any way - I surely didn't mean to! I can sense your frustration. I also sense you're someone who wants/needs to control situations, which is oh-so-hard to do with cancer. OK, you asked for an opinion, and Sue gave you hers; here's mine: I'd have a lumpectomy and radiation, NOT a mastectomy, which in my mind is total overkill for your situation. I know some women simply want to eliminate almost all their risk for a recurrence in the same breast; but really, lumpectomy/radiation leaves you within about .1 percent of a cure, which is awfully good... I'd take that tiny risk any day. As for the Norwegian study, it may be true - but who among us wants to see if they're in the 40%, vs. the 60%, when your life may be at stake? That's a tough one to prove, for sure, although they're continuing with the tests in Mexico, where the same sitautiion exists - a society that didn't regularly get mammograms, and now is starting to.

 

Anyway - you'll muddle your way through this, really you will. Ask your hospital if they have a decision-making area - my hospital has a "center for shared decision making," and it was REALLY helpful to me as I decided between lumpectomy and mastectomy.

 

And, as Sue said (and you concurred) - make your decision, and that's it. No "woulda, coulda, shoulda..." Whatever you decide is right for YOU at that moment. And that's the best you can do. So, good luck, and I hope your surgeon is enjoying her Mediterranean vacation - HA. PJH

I love the idea of the decision making area; what a novel approach!, what a great approach!  I don't know if they do or not, but I may bring it up with my Dr. anyway.

 

I appreciate your note and I thank you for your thoughtfulness; my thought process is that I am going to have the lumpectomy possibly with radiation...one step at a time   ...  I have to have my Dr. explain the difference between the high nuclear grade thing and the architecture and why there is such a disparity in the literature and the significance of both.  I had originally planned on going to a sewing retreat on the 20th (the procedure is scheduled for the 19th); I'm a quilter, I design and sew and sometimes, just sit and stare at the wonderful fabrics!.  This messes that up, but I can do another in the fall.

 

I don't think I could wait to see if it disappeared on its own and I know that the University of California is publishing studies saying that surgery is unnecessary as well.  I was willing to do a watchful waiting, similar to that done with prostate cancer, this, however, does not seem to be in any literature at all.  I'm still not sure why that is, especially when studies are published showing periods of time out as far as 6 years before changes are really made.  I did read something today though that did shed a different light on things for me; a discussion on post surgical pathology sometimes show that the DCIS is actually invasive; it may be in another location or not indicated in the biopsy location, but it is a possibility. That is not a chance I'm willing to take.

 

You are right, control is important; control in this instance is knowledge. Obviously, I'm am going to beat this thing to death aren't I, ha!

 

When I speak to my Dr. I'll let you know what answers she provides and when I'm done with this I have an idea that I may want to run with.  When that time comes, I'd like to get in touch with you to get your opinion.

 

Thank you again, I appreciate your note.

Janice

Janice, I think we learn, during cancer, that while doctors are impressively informed, they're not omnipotent; there's just so much no one knows, that there's a lot of informed guessing going on. And yes, differences of opinion among the "experts." When you break your leg, you go to the hospital and they Xray it, and set it. When you have cancer, you go to the hospital and they say, "Well, you can do this, or this, or this... we're not sure what will work. So you choose what you want." I faced this dilemma over and over again - making decisions I felt I didn't have the knowledge to make. But what can you do? Choose something, and don't look back. As it turned out, I chose lumpectomy; that didn't work, and I had a mastectomy. I did choose to have chemo, as it had spread to my nodes. I did tamoxifen, then an aromatase inhibitor when the data seemed to show that AIs worked better for women with my diagnosis. Now the AI has put me on the way to osteoporosis - another choice. Do I risk cancer, or almost certain osteoporosis? I was going to drop the AI, but my doctor talked me out of it... As I said - no looking back! I believe you'll be back to your sewing and quilting soon; and this will be yet another life experience, something that'll show you just how very strong you are. I look forward to hearing your idea, when you're ready. Take care- PJ

Hi everyone.  I have a phone appointment with Dr. Laura this evening; I have some questions which include the following:

2.  My Family Dr. and I spoke about the pathology report:  the question of multifocal came; multifocal it is said, needs to be treated with a mastectomy; when and why is this necessary and if this is multifocal then there is the queston of why lumpectomy over mastectomy.

3.  What factor would suggest radiation?; I've read about a Van Nuys score, a VNPI score how does this relate to me...

4.  The pathology report speaks of low grade DCIS: solid, cribriform and micropapillary; then it talks about high nuclear grade.  How can this be both and what is the significance of high nuclear grade.

5.  How does high nuclear grade compare or relate to aggressive or non aggressive?

6.  So, if I stay with the decision to go with a lumpectomy, what is the process for the day of surgery?  Over the course of conversations with your Assistant, there was talk of a wire localization first, then going down for the lumpectomy. 

 

Tell me what you think of the questions and do you have suggestions for any other questions.

 

Thanks again for your support and friendship!

Janice

Janice, I hope you had a good conversation with your doctor this evening, and that she answered your questions. Questions 1-5, I don't feel qualified to answer; everyone's particular cancer is specific to that person, and only your doctor can put all the pieces of the puzzle together and figure out what treatment is best for YOU - not for some mythical "average." As for the lumpectomy procedure, please read our lumpectomy FAQS for a pretty good rundown of the surgery. Be strong - you can do this. PJH

Hi PJ.  Had the lumpectomy Friday, it was fine, little to no pain whatsover and rec'd the quick and dirty info on the pathology tonight..

 

The information I rec'd is not complete, I'll get that tomorrow, but the report says that it's all DCIS, high nuclear grade, no invasion, and surprisingly (to me anyway) is the size...3.2 cm!  Only a small cluster of microcalcifications showed up on the mammogram; I was told it is combined total, one from the target site and more from a distant site.  That did it for me!  Radiation is definitely in my future.

My surgeon is a long time friend and I know she's saying (at least to herself!) I told you so, I told you so!! haha!  I'm amazed that so much of this didn't show up on the mamogram and the ones I get are digital too!

So, I head back tomorrow and meet with the RO and the Naturopathic MD and find out what he recommends for radiation, I may or may not be a candidate for the 5 day targeted type, this remains to be seen.

 

3.2 cm is definitely something I can understand, but I truly am surprised that only a tiny little bit showed up on the mammo..I really (and you'll probably laugh at this one) felt like she had gotten it all with the biopsy, so imagine my surprise!!!!

Janice

Indeed, Janice - cancer will constantly surprise you. I had LOTS of those surprises along the way... "We didn't think it was that big... We were sure it hadn't spread... We can't believe it's infiltrated your vascular system..." I felt like the ball in the pinball machine that keeps getting batted in the wrong direction! But all's well now.

 

They do the best they can, I'm sure of it. But we're ALL human, the medical profession included. Good luck as you go through treatment - be sure to read our first-person on MammoSite (the 5-day radiation). Stay in touch, OK? I want to hear your story all the way through. We're here if you need us. PJH

PJH, I read your story on the site; it was..insightful...

 

i have to say, I was surprised by her descriptions of being so exhausted and that the exhaustion last so very long.  I surprised too, at the final discussion concerning the choice between the 5 day and 6 week; my take on this was that the she would have chosen the 6 week instead?  Or did I interpret this incorrectly?

 

Thank you for pointing me toward your story and thank you for being you

Janice

Janice, now you're making me think of all the ways "site/sight" is used - insight, Web site, MammoSite, even incite...Hey, can't help it, I'm an English major!

 

Dani was surprised by how tired she got, too. She's VERY in shape - in fact, she was a paramedic, used to "playing with the guys" and lifting heavy equipment, etc. But it wiped her out. Not to say 6-week wouldn't have wiped her out, too... I think, in the end, she might have opted for the 6-week - but mainly because she had a recurrence within a year. There's no telling if she would have had one with the 6-week, too, though; it's just her gut reaction, I think, to move away from something that didn't work for her.

 

Tough decision. Do you do something tried and true, or try something new? I jumped in with taking aromatase inhibitors 4 years ago when they were just making their way into the mainstream, and I'm not sorry I did. Down the road, in 20 years, if all of a sudden the data starts piling up that they have horrible long-term side effects, I may regret this decision, but I hope not. I believe in never looking back, no "woulda, shoulda, coulda." So when you make your decision, move forward; you sound like that kind of woman anyway. Enjoy your day - PJH

Hi everyone, just home from a sort of discouraging Dr. appt.  We met with the Radiation Onco; he was wonderful, he said they were all taken by surprise by the size of this thing and were in no way prepared for that finding.nor the finding of a second site.  

The final path shows that it is fast growing, fairly aggressive and has a high likelihood for recurrence.  The margins aren't as clear as they would like and tomorrow my surgeon, the RO and the pathologist are meeting, reviewing the slides and determining if they have to do more surgery.

Because of the size of the mass, I do not qualify for the 5 day mammosite radiation, but instead have to do the 6 week stuff.  I'll be doing that here in Lansing since I can't be gone from home and work for that long a period of time.

I'll know about the surgery tomorrow!
Janice

 

Sorry about your discouraging news, Janice. All you can do is keep moving forward, right? No matter what barricades get thrown in your path. There's a chance they'll recommend a mastectomy, in which case you probably wouldn't need radiation. But if you can avoid more surgery, and have 6 weeks of radiation followed by hormone therapy... well, that's not too bad. Radiation is a pain simply because it takes time; the process itself is only about 15 minutes, but there's the waiting, the driving, etc. But you probably know all that. Personally, I didn't feel any ill effects from it, though I know a lot of women become quite fatigued...

 

Anyway, good luck tomorrow. Let us know what they say - PJH

Thank you for being my rock, seriously.

The RO has brought up the possibility of a mastectomy; he voiced the concern that we had..how can a little itty bitty cluster of microcalficification turn into a 3.2 cm mass and not show up on a mammogram..and of course the next question has to be...what else aren't we seeing?  These findings are the talk of the office right now.

 

The benefits of going to a very well equipped small hospital with top people is that they meet and talk frequently about patients; they make decisions based on combined wisdom and I can only think that I walk out a winner on that one.

 

Unlike before, I am of the mind that I am not going to question (too much!) the decision they come up with.  I will, however, talk to you about it; I trust your judgement and knowledge and I appreciate you helping me here!

Janice

I feel the same way about my hospital; they meet every Wednesday, all the cancer-related people, and discuss cases, and come up with a solid group recommendation. I'm glad you're at a place you like and trust.

 

And, ask away! I'm here... Look forward to hearing from you again soon. PJH

PJ, Hi.  I'm heading back on Monday to discuss treatment options; I know that additional surgery is in my future and I know the discussion will be mastectomy vs re-excision.  What should I do to prepare myself, I guess that's not right, how do you go about making a decision like this?

 

For the first time, I feel like this is something to be reckoned with.

Janice

Maybe I should put it differently, maybe I should have said that this is finally hitting home...

Hi Janice. I just caught up with your messages after being caught up in my own treatment. I finished radiation last week and am cursing them for the very sore area on my neck where they treated the supraclavicular lymph nodes. And all for do-it-and-hope-for-the-best treatment!

 

Boy, you must have been on a roller-coaster during the past few weeks! Have they made a decision about the kind of surgery? I must say, I'm not surprised to hear that the lumpectomy was not totally effective. I just had a gut-feeling about it.

 

Have they checked your lymph nodes? Has anybody mentioned the necessity for a PET scan to check for distant metastases? Will they also consider chemo now in light of their findings?

 

One tip, if a mastectomy is on the cards. Make sure to ask for a physio to visit afterwards to give you some exercises to restore your arm movements. I'm surprised by how often I meet women who have not been given any exercises after their mastectomies.

 

Also, if you are going to have radiation, start preparing your skin ahead of time by getting it well-moisturised. My major treatment area has been pretty good - the technicians commented on this - and this was the area I focussed on. Should have paid more attention to my neck, but it's too late now and it will heal.

 

A final tip. Whatever scars and wounds you end up with, try treating them with medical honey. It's fantastic!

 

Best of luck, Janice. You sound like a very strong woman and will hit it for six (cricket term something like a home run).   Sue