Anyone opted out of surgery for DCIS

qbreastcancer

I wonder if any sister out there opted out of surgery for DCIS.  Any experiences, advice?  What's the outcome?

 I had two biopsies done with my left breast.  Both shows DCIS, intermediate to high grade, moderate necrosis.  My doctor suggested mastectomy.  I did a lot of reading online since my diagnosis.  What I find out is that DCIS is not cancer and not life threatening.  Some DCIS may turn into invasice cancer but some never will.  I can't help but keep thinking surgery is somewhat overtreatment to DCIS. 

DCIS tends to be multifocal.  Yet lumpectomy with radiation has the same prognosis as mastectomy.  This also suggest surgery may not be necessary for DCIS.  But whenever I bring this up with my surgeons, they look at me like I'm crazy.  I know scientists are studying non-surgical treatment.  Hopefully they find a cure to save women from knife.

3monstmama

I am not sure that everyone would agree with your conclusion that "DCIS is not cancer and not life threatening."  I know my oncologist wouldn't.  My oncologist considers it cancer but not life threatening in the sense that it has not become invasive.  Thyroid cancer that hasn't left the thyroid isn't life threatening either but its still cancer and has potential of being both invasive and life threatening. 

You sound like you have only seen one doctor who said mastectomy.  Perhaps you might get more satisfaction if you spoke with another.  My first surgeon candidate pushed mastectomy or partial mastectomy on me but the second was more experienced and recommended a lumpectomy.

tweetybird

I have to agree with you Mama. DCIS is considered a pre-cancer, which can eventually lead ti invasive cancer.

Any of us who have DCIS have alot of options to consider before making a decision, so you might want to get a second or even a third optionion Q. With my DCIS, my breast surgeon, didn't even suggest a masectomy, but I had a very low grade DCIS. If there's anybody that has more knowledge on this, but I think the higher the grade Doctors might recommend a masectomy.

qbreastcancer

Thank you ladies for the quick replies.  I did get second opinion and all doctors said mastectomy because the two DCIS sites are far apart.  It's pretty extreme to me to treat something pre-cancer and may not even become invasive cancer.  I read a statistic that 5% women with DCIS choose not to have surgery, but the article didn't say what happened to them later. 

Dilly

Q, Janet gives good advice.  My onc tells me the grade is a big factor. More research, and second or even third opinions can be most helpful as you make your decisions. Best wishes!

Beesie

Yes, it's true that some DCIS will turn into invasive cancer and some might not.  But what is also true is that all DCIS not alike, and that's what you have to consider as you make your decision.

Has anyone opted out of surgery?  In 4+ years on this board, I recall two women who've done this.  Both had a single foci of a very tiny amount (well under 1cm) of grade 1 DCIS, with no aggressive features.  With that pathology, the studies would suggest that only about 25% - 40% might ever become invasive. 

With high grade DCIS, and with multifocal DCIS, it's a different story entirely.  Most experts will tell you that with high grade DCIS, you can assume that at least 80% - if not 100% - will become invasive.  Are there a lot of studies on this?  No, because no doctor would recommend to a woman with high grade DCIS that she not have surgery.

It is true that if adequate clear margins are achieved, the survival rates after a lumpectomy + radiation are equal to the survival rates for those who have a mastectomy. Recurrence rates may be close too but usually the recurrence rate is lower for those who have mastectomies.   Do not assume that most DCIS is multifocal and there is likely to be DCIS left in the breast after a lumpectomy, and that this therefore means that DCIS doesn't need to be removed.  That's wrong for three reasons:  First, most DCIS is not multifocal.  DCIS is more likely to be multifocal than IDC, but most DCIS is not multifocal.  Second, most women who have lumpectomies also get radiation and often take Tamoxifen, and those two additional treatments go a long way towards killing off any rogue cancer cells that might be left in the breast.  Third, the recurrence rate for those who have high grade DCIS and who have small margins after surgery can be as high as 60%. Even with radiation and Tamoxifen, the recurrence rate for those with this pathology is in the range of 15% - 20%.  And 50% of these recurrences are invasive. So with this type of diagnosis, it's pretty obvious that the DCIS that's left in the breast is not sitting there doing nothing.  

As for the definition of DCIS, while some doctors call it a pre-cancer, more experts consider it to be the earliest stage of breast cancer.  The most accurate definition of DCIS is that is a pre-invasive cancer.  DCIS cells are cancer cells - don't make any mistake about that - they simply are cancer cells that are contained within the milk ducts of the breast. As a result, they are trapped and don't have the ability to move into the body.  So DCIS is not life-threatening. However the thing to understand is that with one final biological change, the cells gains the ability to break through the milk duct and then it becomes invasive cancer and becomes life-threatening. Just one change.  The rest of the cancer cell development is all there within the DCIS cancer cell.   

(As an aside, there are quite a few cancers out there that are in-situ cancers and nobody suggests that any of these other types of cancer be called a "pre-cancer".  Frankly, I find the fact that doctors talk this way only for breast cancer to be insulting because the reason put forward is that they want to spare women with DCIS the emotional trauma of having a diagnosis of breast cancer.) 

It is true that surgeons are studying non-surgical treatments for DCIS, but here again, this is not something that would be considered a viable option for all types of DCIS.  For those who have small amounts of low grade DCIS, yes, but for those with larger amounts of DCIS, or multi-focal DCIS, or high grade DCIS, no. 

The net of it all is that there are many different types of diagnoses that fall under the heading "DCIS".  Some are not very threatening, some are very threatening.  One treatment approach doesn't work for all diagnoses.  It is possible to over-treat DCIS (from the standpoint of what's necessary) and it is possible to under-treat DCIS.  What's most important is that everyone understand the specifics of their own diagnoses so that they can determine the most appropriate treatment.

I've done a lot of reading on DCIS and on how much of DCIS might become invasive over time.  I will bump up some information I posted a while ago that summarized my findings on this topic. I'd suggest you read that before you make a decision.

CrunchyPoodleMama

qbreastcancer, I'm going to answer your question from the perspective that I personally 1) have a very high risk tolerance, and 2) believe very much in diet and lifestyle choices affecting future recurrence and/or growth of existing cancer cells... so understand that my answer does not speak for the vast majority of women with DCIS.

For me personally, if I had small, low-grade DCIS, and I had no intention of becoming pregnant in the future, I would consider treating with diet (especially iodine) and lifestyle, and monitor carefully. Again, that is my own choice that most women would not make.

If I had high-grade DCIS as you do, I would have a lumpectomy and if there were good wide clear margins, I would personally forgo radiation (again, this is not standard-of-care and not the decision most women could or should make) and again, monitor + treat with diet/lifestyle.

Sadly, I can't do either of the above... I still have DCIS remaining after a lumpectomy and re-excision (I had a gigantic amount). I seriously seriously considered just leaving it there. But, I can't, because I want to get pregnant (and my DCIS is over 90% ER+ -- I don't want to risk pregancy fueling its growth).

CTMOM1234

q - I totally know where you are coming from. I definitely entertained the same thoughts -- mine was grade 2 DCIS, no family history, no lump detected, no nothing . . . just some little calcifications on a routine mammogram that led to a biopsy , and who even knew what calcs were or why anyone cared, right?

My BS had insisted that I also have genetic testing and an MRI, and that MRI led to an MRI biopsy. Thankfully all was OK. All this fuss, right, for pure DCIS!

Final pathology report (I had a lumpectomy/partial mastectomy) shows a small amount of IDC! Didn't think that was going to happen! My treatment plan stayed the same, luckily because it was caught early, and I didn't have chemo, did have rads, and for now have opted out of tamoxifen (was given the option, which I appreciate).

Sure am glad I didn't take a wait and see approach. Please don't.

qbreastcancer

Thank you all very much !!!  I'm so fortunate to find this forum.  Beesie, you are such an expert!  I thought I read a lot.  It seems I really need a mastectomy.  My breast is not big.  Multiple lumpectomies to get rid of the multifocal DCIS will be quite deforming.  That's why doctors all suggest mastectomy.  CrunchyPoodleMama, I also believe very much in lifestyle choices and be happy and upbeat.  Best wishes to you all.

dsj

Yet lumpectomy with radiation has the same prognosis as mastectomy.  

 I think the reason for this is because, in both cases, the assumption is that the DCIS has been removed.  The only thing I would say to factor into the very good explanations you have received above is  your age.  Breast cancer seems to be more aggressive in younger women, and because you're younger, you will be living longer with DCIS and and thus have more chance to have recurrence.  If I were in my 90s (instead of my 60s), I MIGHT have thought about not having surgery, but because I hope to live at least 20 more  years, I am not willing to accept the much higher risk of recurrence that no treatment brings with it.  

Hindsfeet

I stuggled with after breast cancer treatment, but I never considered not having surgery. I always thought, cut the bad part of the apple out, with good wide margins. I read somewhere that cancer can disappear. If it could, how do you know that you would be so lucky. To me cancer left in the body, is the same as wishing a rotten spot on an apple would go away. Eventually it would destroy the apple.

Mx is a tough choice, but wise if the whole breast is infected with cancer cells. I believe that all grades are bad, and should be removed...no matter what age.

Beesie

qbreastcancer, exactly 5 years ago I was in exactly the same spot that you're in now.  Small breasted, with high grade DCIS in two areas of my breast (I also had a microinvasion) and a recommendation from my surgeon that I needed to have a mastectomy.  What?  Early stage BC and I needed to have a mastectomy? It certainly seemed like over-treatment.  Because of the microinvasion, I never considered not having surgery but a mastectomy, really?  Really??? 

When I went to my 2nd opinion surgeon, he was willing to try a lumpectomy but he was honest in saying that he was doubtful that we'd get clear margins.  But he was willing to try.  And I would have happily gone along with that.  Then he sent me for an MRI.  The MRI showed "stuff" throughout my breast.  My surgeon explained that there as no way to know if the "stuff" was more DCIS but we both guessed that it was.  So that made my decision a lot easier.  I accepted that I had to have the mastectomy.  As it turns out, my breast was full of DCIS, most of it high grade.  And I did have that microinvasion (found during the earlier excisional biopsy), proof that my DCIS was already starting to evolve to become invasive.  It wasn't the surgery I wanted, it was a really tough decision to make, but in the end it turned out to be exactly the right thing to do.

If you have not had an MRI, I'd strongly recommend that you get one.  If the areas of suspicion look large, that will help you accept that a mastectomy is the way to go.  Alternately, if the areas of suspicion appear smaller than expected, you might decide to try a lumpectomy first, to see if clear margins can be achieved and to see the affect on the appearance of your breast.  If it doesn't work, you can always have the mastectomy then. 

Anonymous

qbreastcancer,

Go to:  http://www.mskcc.org/mskcc/html/15938.cfm  (Memorial Sloan-kettering).  Click the box on the right for Risk Calculators.  Follow through to the DCIS calculator.  Fill in your information and it will calculate your risk percentage.  You can print it out and bring it in to discuss the results with your oncology surgeon.

I feel for you.  After gathering and evaluating all of my medical records, and then assessing my tolerance (or lack thereof) for risk, I made a huge swing from thoughts of "watchful waiting", to a choice of a double mastectomy.  Do what you feel is the best choice for you!

Love & Light 

redsox

The MSKCC risk calculator is very interesting but it does assume that you have had surgery to remove the DCIS.  Even the choice of positive or close margins is not the same as leaving known DCIS in the breast.

qbreastcancer

Thank you all again!  My MRI shows a large area of abnormality.  I don't have other choice but remove the whole breast.

 I did read from Dr. Susan Love's book that it's a reversible process going from normal duct to hyperplasia to DCIS.  She didn't say more than one sentence about it. 

Beesie

I'm a not a big fan of Dr. Love.  She's one of the few "experts" who call DCIS a pre-cancer but because she has such a loud voice in the breast cancer community, a lot of weight gets put on her opinion.  As for whether the process to DCIS is reversible, that's news to me. If it's true, it would be a very significant point and it certaintly would deserve more attention.  But then Dr. Love doesn't pay much attention to DCIS.  Considering that a DCIS cancer cell has almost all the characteristics of an invasive cancer cells (except for the ability to break through the milk duct), I would be surprised to hear that DCIS cells can be revert back to hyperplasia and then normalcy. That would be great news, of course, but consider me a skeptic of anything that Dr. Love says about DCIS.  

Hindsfeet

Beesie, I strongly agree with you. I don't see how dcis cells, especially grade 3 can revert back to hyperplasia and to normalcy. To me, it's the same as expecting a bad spot on an apple to revert back to normalcy. Maybe the body or lymph system can flush out dcis, but see no way for it to be normal.

hmillar

I am newly diagnosed, just two months ago. I'm not nearly as expert as some of the women who have already posted, but I have to weigh in: My initial diagnosis was DCIS, the first surgeon I met with said there might be a little invasive cancer, but it had probably just become invasive, not to worry. Three weeks ago, I had a lumpectomy, the surgeon removed a 5cm by 1 cm piece (what do they call it? a lump?) Anyway, there was an almost 1 cm invasive tumor, grade 3. Full pathology pending. They did not get clean margins on one side. While the docs still say my prognosis is good, the situation was worse than the biopsies indicated.

 I have a meeting with an oncologist next week. Facing possible chemo, radiation, and a re-exision. Frankly, I agree with the folks who say that DCIS is cancer, it's just cancer that hasn't broken out and become invasive yet. If I hadn't had surgery, I wouldn't have known the true extent of my disease. 

 I have a kid, age 9, so I just can't imagine not having surgery, not doing everything. I think lifestyle and nutrition are huge, but I'm pretty sure they won't cure cancer by themselves. 

agada

 qbreastcancer and Double-or-nothing

The results I got on the calculater were much higher than what my oncologist told me. He said I was cured with a 1-3% chance of it coming back.  The calculator said I had a 14% chance of the cancer coming back. Interesting calculator

I opted for a bilataeral mastectomy for my multifocal DCIS and do not regret it.  I have a high family rate of breast cancer since I am of Jewish backgroung.  At least you will be taken well taken care of.

Cancer reverting back to normal cell?  Is Dr. Love nuts or what?  With that attitude more women could die from breast cancer as opposed to being treated properly.  Please excuse my spelling.

Agada

Lilah

I also think the trouble with all the testing and the biopsies is that they can miss something worse.  In my case I had a mammo which indicated calcifications.  A biopsy found DCIS but no evidence of IDC.  An MRI only saw the DCIS.  After first lumpectomy it was found I did have invasive cancer and that it was very tiny... so nothing was able to detect it, not even a small biopsy.  They needed to see the larger sample.  I had another lumpectomy and still had one margin that was close... so then I opted for the MX (unilateral). 

I think this idea of DCIS as a "pre-cancer" is an old idea that doesn't hold water today.  SOME DCIS grows slowly; mine was always high grade.  A slow growing DCIS might be cause for less worry but I personally would not want to mess around with cancer.  And DCIS is cancer.  It's just cancer caught at an early stage.

Kathy044

I just pulled out Dr. Love's Breast Book, (the 4th edition, pub 2005, p. 210-211), the 2010 edition is just out and her views may have changed. Anyway Beesie I suggest you go back and take a look again. I personally found the idea that cancer spread has more to do with the environment surrounding the cancer rather than the cancer cell characteristics themselves intriguing and empowering.

snips from the book regarding DCIS and invasion:

"we have yet to find anything that shows a difference between DCIS and invasive cells..." 

"what would cause DCIS to stay within the duct would be not its inability to get out but the action of some other force keeping it in."

"we may discover that even invasive cancer can be reversible. If we knew the elements needed to confine the cells, we could give patients whatever those elements were and send the cells back into confinement"

dsj

agada,  just a guess why the calculator gave you higher risk than your oncologist might be that it doesn't ask if you had a mastectomy; just asks for excision. 

 kathy044,  I think it would be incredibly helpful if scientists could find the reasons why some DCIS turns invasive, but I think the environment in which the DCIS exists is the physiology of the breast, which is not an environment that we can really control.  That is, I think this is hopeful area of research, but I don't personally feel empowered by it.  Also for those of us facing treatment decisions, it is still a big "IF."   The original question that drove this thread concerns opting out of surgery for DCIS.  I don't think we are at a point in our understanding of DCIS where this is an option. 

Beesie

Kathy, it's interesting that in a 2010 version of her book, Dr. Love's would say "we have yet to find anything that shows a difference between DCIS and invasive cells..."  and "what would cause DCIS to stay within the duct would be not its inability to get out but the action of some other force keeping it in" because both of these statements are inconsistent with most of what I've read about DCIS, including these recent findings: 

• From May 2008, a report on a new finding that helps explain changes in the DCIS cell that lead to the progression of DCIS to invasive cancer: "Ductal carcinoma in situ progresses to invasive breast cancer because of the loss of a protective cellular barrier, leading to fibroblast-induced disintegration of milk duct walls, investigators here reported"  http://www.medpagetoday.com/HematologyOncology/BreastCancer/9348
• From October 2008, a report discussing evidence that molecular changes happen within the DCIS cancer cells which allow it to become invasive:  "We identified new genes that are potentially involved in the malignant transformation of DCIS, and our findings strongly suggest that cells from the in situ component of lesions with co-existing invasive ductal carcinoma exhibit molecular alterations that enable them to invade the surrounding tissue before morphological changes in the lesion become apparent."  http://www.ncbi.nlm.nih.gov/pubmed/18928525

I do think that Dr. Love's position on DCIS may be progressing; previously she would say that all DCIS, regardless of grade, had only a 30% chance of ever becoming invasive; more recently she's acknowledged that high grade DCIS has a greater likelihood of becoming invasive.  Similarly, the definition of DCIS on her website now says: "ductal carcinoma in situ (DCIS) Ductal cancer cells that have not grown outside of their site of origin, sometimes referred to as precancer.". I may be wrong but I believe that previously she more definitively described DCIS as being a pre-cancer.

It would be nice to see her come around.

Kathy044

Hi Bessie, I will edit my previous message to make it clearer, the quoted material is from the 4th edition (2005). The 5th edition has just been published in 2010.  I'm waiting to receive my copy in the mail. The first link you posted from May 2008 mentions tumor microenvironment and it's role in invasion, that I believe is what Love was talking about in the earlier book. 

BTW even though I don't have DCIS I've been following along on the discussion and have found your posts Bessie most interesting and helpful in understanding breast cancer and it's progression in general.

dsj something happened probably five or six years ago to make my cancer invasive, and later to move into one node. I gained weight post menopause and that might have been part of it, too much estrogen, and that would have made a difference to the breast environment at that time. By the time I was dx with BC I was down abt ten pounds. I started to walk (after reading Love's book) and lost another three pounds before surgery. I also lost 15 pounds during chemo, though that was not by choice so I do think the micro environment in my breast today may be quite different than it was back then when I first developed ILC. I'm now on Armidex and hope to keep it this way.

agada

Kathy044

I went ahead and had the bilateral mastectomy as my DCIS was multifocal (is that the right thing to say when it is in many places?).  It just upset me that I had such a high high family history ( mother, grand mother, two aunts, a cousin, etc.)  of breast cancer the doc said do the bilateral mastectomy.  Still, I dont regret it.  Besides, the reconstruction makes me look 21 again :-)

Agada

sweatyspice

I went to a presentation given by a pathologist from Mt. Sinai hospital in NYC a few weeks ago.  His opinion (fwiw) was that all DCIS will eventually become invasive cancer, it's just a matter of how much time it will take.   

peppopat

Hey all,

oRINIGAL   diagnosis in pathology report #1---L  DCIS  stage 0, grade 2

 I got a copy of my second opinion pathology report  today. The breast surgeon has not had a chance to go over it with me, yet.  I DO know that after she read this, she's suggesting I also get a second opinion from another surgeon. I don't know if i like the sound of that.  I was diagnosed with DCIS  in Aug 2010  and had a core needle biopsy.

 Can someone take a  stab  at what this latest report  is telling me?   It was done by one of the leading pathology labs in DC  called the AFIP  (no longer avaiable for ciivians)

It says:

 Intraductal cacinoma, cribform type w/ comedonecrosis.  -2mm lesion suspcious for tubular carcionoma.

 Comment:  2mm focus of pseudo-invasive or invasive tubular carcinoma which could be better delineated with immunostaining. Unfortunately,  we have neither a block nor unstained section on which to do the immunostains.  In either event,  re-excisionis recommended.

 Do that mean I need another biopsy?  If so,  what kind?

Immunstain posisitve for Estrogen  and Progenterone and the HER2/Neu is 2+ positive on the DCIS and on the suspicious area. (that where I got lost)

Ki-67  (does anyone know what THAT is?)  is positive on about 15% of the nuclei  in the DCIS, 5% of thenormal nuclei and none of the nuclei in the suspicious area.

 I'm in  no hurry to have unilateral mastectomy. Any reason why I should be in a hurry?  Any help with this (as I can't stand waiting over the weekend,  would be greatly appreciated)

cosbon

Intraductal carcinoma is the same as DCIS.  It sounds like there is a small area which may be tubular carcinoma, and they may want to biopsy it to find out, or they might just wait for the path report after the mastectomy or lumpectomy. 

Tubular carcinomas are usually small (1 - 2 cm diameter) and do not spread far beyond the original tumor site. It is possible, but unusual for tubular carcinoma to travel to your lymph nodes -- and unaffected lymph nodes means less chance of metastasis. Your chance of recovery and survival after treatment for a tubular carcinoma is very good. 

So, from what I found, it doesn't sound too much different from your original path report.  Just a possibility of another treatable kind of cancer in the area.   

worriedwoman

peppopat

a question for you...........you mentioned getting a second opinion pathology report...........Do you request that slides be sent to another facility or the report? or how do you do that? thanks!

rianne2580

Worriedwoman,

I am getting a second pathology report. In my opinion, pathologists are the key person but you rarely meet them or talk to them. Back in 1994, when I was first diagnosed, I talked to the pathologist. At the time, he said I did not have cancer and it was rare for it to metastsize, and another surgeon backed that up. So I did nothing. So, now 17 yrs later, that DCIS showed up again. Now I believe it was there the whole time. My original surgeons wanted a double mastectomy. My margins were dirty all around. But I liked the idea of watching it. That's what we did. My angst is what to do now. I would contact another oncologist or surgeon and send your original slides to them. Their pathologist will re read the slides.

peppopat

Worried  woman,

I am going next week to get my breast biopsy done over  at the same facility but this time Quest labs will only be harvesting the specimens will be put on the slides,  The AFIP will do the staining and write the report.  It really annoys me that one pathology report says non-invasive while the second infer invasive.

my doctors declined to write an RX to get this done over  I then presented my case to my insurance's appeals board, and  they OK'd me for a second biopsy.  I am,  of course, going to change the primary care doctor and well as his relative,  which is my breast doctor. 

Diagnosis  Aug 2010,, DCIS, <2cm, stage0 , grade2, ER/PR+,  HER2+,  w/ comedonecrosis

SymptomsL Palpable lump discoved behind right nipple May 2009,  MammogramOK

                  Blood leaking for 3 weeks  July 2010 but stopped after that