Have I got cancer or haven't I? DCIS confusion...

maize · July 2012

Thanks, Beesie. I'm glad to know that the DCIS could not be a second cancer originating from somewhere else in the body, including the other breast.

lbrewer · July 2012

we need to get the word out about the new oncotype test for DCIS. Like the other Onco-type tests it exams the individual DNA to determine recurrence risk and help decisions about radiation. Its only been out since Ded. 2011 and many (most) oncologists are unaware of it. LIke the original OncoType itss a frozen section and done after surgery.

Infobabe · July 2012

maize

FYI, I am 76 and they are throwing everything but the kitchen sink at me. I have all the treatment I can handle.

We don't know enough about DCIS at this point in time. Very shortly, probably in the next 5 or 10 years, DCIS will be treated on the cellular level and can be tailored to the individual. We aren't there yet and have to go with what we know now.

BLinthedesert · July 2012

what needs to be done is to have the oncotype dcis test (or any other risk diagnostic) validated. The reason that it is not being used yet is that original test was developed on a sample of 327 tissues, and these results have not been published in any peer-reviewed journal (an abstract at a meeting is not peer reviewed). It is available, because it is a private company - and these types of tests are not regulated in the same way that drugs are -- but the original development has not been reviewed by the scientific community and a sample size of 327 is pretty small - it is even smaller than the "older" indicators, like the Van Nuys Prognostic Index, which also has not been validated outside of the group that developed it.

The oncotype test for invasive disease is being used because the National Cancer Institute has funded a trial that is evaluating it.

Beesie · July 2012

I think the Oncotype for DCIS is interesting but I agree with BLinthedesert that it's too early to rely on it to any great extent. The testing just isn't there yet.

One thing that concerns me about the DCIS Oncotype is that while Genomic Health suggest that it be used for all DCIS patients, the testing was done only on tumor samples from women who had what would have been considered a favorable diagnosis. Add to this the fact that although none of the women had radiation, some did take Tamoxifen. And then there are the results. The "low risk" group - the group that might consider no radiation based on having a low Oncotype score - had a 10 year recurrence rate of 12%; 5.1% of the recurrences were invasive, the rest were DCIS. Most breast cancer risk scales consider a 5% risk of invasive breast cancer over a 10 year period (i.e. 0.5% average annual risk) to be high risk. And that doesn't count those who had a recurrence that was DCIS.

Here is info about how the Oncotype for DCIS was validated:

"Researchers analyzed 327 DCIS tumor specimens from the Eastern Cooperative Oncology Group E5194 study. This prospective study, conducted from 1997 to 2,000, enrolled two cohorts of patients with DCIS using low-risk criteria based on clinical and pathologic information. Patients were treated with surgical excision, optional tamoxifen and no radiation...

...In the study, about 75% of patients had a low DCIS score. Their chance of having any IBE was 12% and their chance of having an invasive IBE was 5%. Patients with a high score had a 27% chance of any IBE and a 19% chance of developing an invasive IBE. Patients with an intermediate score had a 24.5% chance of developing any IBE and an 8.9% chance of developing an invasive IBE." New Molecular Test Predicts Risk for DCIS

And here is the selection criteria that was used for the base study that provided the 327 tumor specimens:

"ECOG E5194 included 670 eligible patients with DCIS treated with surgical excision (≥ 3 mm negative margins) without irradiation, 228 of whom received tamoxifen. Patients had low or intermediate grade DCIS ≤ 2.5 cm, or high grade DCIS ≤ 1 cm. " http://www.sabcs.org/PressReleases/Documents/Solin.pdf

Infobabe · July 2012

Beesie

I had cleared the way for the Oncotype but decided not to get it because the scores seemed to correlate with low stage, low grade. I expected to get a low score but would be left with the same chances of recurrence. So I didn't see much to be gained since I had already cancelled rads. So I have gone for the 2nd path opinion. I don't have the results yet.

DCIS leaves us so confused. If mine were invasive, I would be puling out all the stops and taking all the agresive treatment. What you need to do is clear with invasive, not so clear when not invasive,..............for now.

midnight1327 · July 2012

i had a grade 3 IDC, but no lymph node involvement. i am waiting for patholgy reports as i can't remember whether i am her2 positve or ER+. They did not say i should not have chemo, but there was only 7% of good that it would do compared to the s/e i would have to endure. it does worry me that it could come back, i am on 5years of tamoxifen and rads. thanks

Beesie · July 2012

Infobabe, here's the thing. It's not so clear when it's invasive either. In fact it's less clear because you are not only dealing with the questions of how to address the cancer that is in your breast but you also have to deal with the questions of whether or not to treat the risk that some cells might have escaped the breast and moved into the body. So you are grappling with treatment decisions about something you know (you have cancer in your breast) and something you don't know (are there are any rogue breast cancer cells in my lymphatic or vascular systems?). Sometimes you have to balance the two because you may not want to have two stressful, physically taxing and difficult treatments at the same time (mastectomy/reconstruction and chemo, for example).

Those with DCIS have to figure out the answer to these questions:

- Lumpectomy or mastectomy or bilateral mastectomy?

- After a lumpectomy, what is an acceptable margin (either to avoid a mastectomy or re-excision or pass on radiation)?

- Radiation or not after a lumpectomy?

- If the margins are close after a mastectomy, radiation or not?

- Hormone therapy or not?

Those with invasive cancer have those questions but also have to add these:

- Chemo or not?

- If HER2+, Herceptin or not?

- If the tumor is large, chemo first and then surgery or surgery and then chemo?

- If the SNB is positive, do an axillary dissection or not?

- For those who have a mastectomy and just 1 or 2 positive nodes, radiation or not?

So when you add invasive cancer into the mix, it doesn't get easier, it gets harder, particularly when you consider that the additional treatments that you are considering are possibly the most toxic and have a higher risk of serious side effects. The risk from the treatments is greater, but the risk from the disease is greater too. What do you do?

In reading this board over the years, I think the most difficult decision may be for those who have very small invasive tumors that are HER2+. There is more confusion about that diagnosis - and less information available - than there is about DCIS. For an invasive tumor that is only 3mm in size (tiny!), do you have chemo and Herceptin? Everyone knows that even small HER2+ tumors are extremely aggressive, but there is no good information on tumors that small. The experts seem to be divided right down the middle on this one. Small triple negative tumors are another diagnosis that presents a lot of unknowns and difficult decisions. ILC, which presents a higher risk than IDC to the contralateral breast, is another tough one.

What it comes down to is that breast cancer - whether DCIS or invasive - presents most women who are newly diagnosed with a lot of difficult decisions and not many clear answers in terms of what's the right amount of treatment, what's under-treatment and what's over-treatment. The decisions with DCIS can be difficult, but personally I think the decisions with invasive cancer are even more difficult.

maize · July 2012

Regarding the grades of DCIS:

For you to read their determinations--excerpts from:

Challenges in ductal carcinoma in situ risk communication and decision-making†
Report from an American Cancer Society and National Cancer Institute Workshop

Ann H. Partridge MD, MPH1,*,
Joann G. Elmore MD, MPH2,
Debbie Saslow PhD3,
Worta McCaskill-Stevens MD, MS4,
Stuart J. Schnitt MD5

Article first published online: 4 APR 2012

"For example, in a letter to the BMJ, a patient with DCIS understandably bemoaned the fact that during one appointment with her physician, she was told both that she did have cancer and that she did not have cancer."

"Most (78%) also indicated that the DCIS decision-making process was as difficult (36%) or more difficult (42%) than that for women with invasive breast cancer."

"...19% of participants were aware that not all women with DCIS will develop invasive breast cancer. Approximately 60% of women thought DCIS can metastasize and 27% were unsure about this. Furthermore, approximately one-half of the women in the study expressed high decisional conflict when considering treatment options."

http://onlinelibrary.wiley.com/doi/10.3322/caac.21140/full

LAstar · July 2012

So true. I opted to consult with a highly-respected MO in my town when I was first researching my treatment options, and she said,'Congratulations, you don't have cancer.' She seemed to think that my concerns were laughable. She was ultimately useless to me treatment-wise because her whole focus was chemo & hormone inhibiting drugs, and my treatment requires neither. However, it took a long time for me to realize how serious high-grade DCIS is and that I should act quickly in my treatment. Fortunately others in my care team felt that my case warranted a more immediate response.

Infobabe · July 2012

maize

I completely get that. I have read that half of women with DCIS refused radiotherapy as I have and for the reasons you state.

I am scared to death. Indecision is making it that much more worse. I got a call this morning from my second path opinion. I will receive the report in the email and speak to the doctor on Thursday. I am fully prepared to have the mastectomy just to be done with it.

But the thought horrifies me. In the end, I will do what I must do.

LAstar · July 2012

The thought of MX horrified me too, but the reality of it is not so bad. It is even comforting.

Infobabe · July 2012

LAstar

I am so glad to hear you say that. Did youi have a general surgeon or a breast surgeon?

LAstar · July 2012

I had a breast surgeon. I went to the Center for Restorative Breast Surgery in New Orleans and had immediate reconstruction with hip flaps. I never had a waking moment without breasts and that is good for morale! I keep forgetting that I had a mastectomy! I finally came to the conclusion that, for me at 42 with a 4-year old daughter, there is no treatment that is too aggressive, even for DCIS. I'm even having a small re-excision when I return to NOLA in September for my cosmetic touch-ups because I had a 1mm superficial margin that I would like to see improved. When I began this journey in March, I couldn't have imagined a more horrific outcome than BMX! It's just not as bad as I had thought. The human body is amazing and I am healing well. There are still weeks of healing to go and another small surgery, but none of this is more than a healthy body can handle if all goes as planned. I'm just looking forward to having, after 4 surgeries, those elusive clean margins!!! Begone, breast cancer.

rosetx · July 2012

@Infobabe--I had a bilateral mastectomy and was diagnosed with DCIS, ADH, ALH and a bunch of other precancerous "stuff." I used a breast surgeon and a plastic surgeon. It's not a cakewalk, but it's certainly doable. It's still a work in progress with reconstruction, but I think I was prepared for the worst--so it's definitely been better than I was expecting. Good luck on whatever you and your doctors decide. Each person has to make that decision based on her own situation and feelings.

gumshoe · July 2012

Here in BC, Canada, they tell you it's not breast cancer. If I had a nickel for every time a doctor said to me, "Well, at least you don't have cancer"...

However, I still had a lumpectomy, re-excision, and will be having a mastectomy this Thursday. I don't regret my treatment. I'm having the mastectomy mostly because I wanted to avoid radiation but I also don't want to "wait and worry" every time I have a mammogram.

Beesie, thanks again for being such a wealth of information. It has sure helped me.

malleycat · July 2012

Beesie- I wish I could give you a big hug! I pretty much cried myself to sleep last night after checking out those links posted on the first page of this thread. A few weeks ago I read on one of the forums here about someone else that had the same thing happen (DCIS going to Stage 4) and it scared the crap out of me because her situation is similar to mine (young (32), lots of DCIS (I had 10cm in the right, 4cm in the left), BMX with clear margins and clean nodes). I managed to come to my senses and remember that it has to be incredibly rare, but when I read those links I panicked again. I wish that I had finished reading the page here before shutting down for the night because I would have seen your words of wisdom that made me feel so much better! I really can't thank you enough for taking the time to put things into perspective- it had a huge impact on me.

proudtospin · July 2012

bessie is one of the smart cool ones

and thanks from me as well

LtotheK · July 2012

I can tell you a little about the "wait and worry". I had a lumpectomy, chemo, and rads for a small grade 3 IDC two years ago. My breasts are a road wreck of density, calcificiations, and now, what may be new calcifications in an area previously stable.

I might have gotten lymphedema, but I wouldn't be here right now if I'd gotten the bilateral mastectomy in the first place. Ironically, the difference between lumpectomy and mastectomy outcomes are approx 5% (in mastectomy's favor). Excuse me, but my chemotherapy only bought me 4-5% in all likelihood.

I have a friend who was a pharma rep in Europe and her specialty was Taxotere. She told me she wished I'd talked to her first. She tells women to go for the mastectomy, despite how difficult it is. FWIW.

gumshoe · July 2012

Also, fwiw, after I agonized over my decision and finally decided on a UMX, my oncologist said, "I don't usually say this but if I were in your shoes, I would have made the same decision."

Chemo was never recommended to me but rads and Tamoxifen were (if I had lumpectomy only).

Infobabe · July 2012

LtotheK

What was your original diognosis? Stage, grade and hormone status.

LtotheK · July 2012

Hi Infobabe, there were a lot of circumstances. I was a Stage 1, grade 3 IDC with lymphovascular invasion present at biopsy, none at final pathology (as I'm learning about myself, I really like to be in the minority). I was strongly ER/PR+. Node negative. The amazing part: Oncotype score was 12. I went to three doctors for treatment options. I got a "yes", "no" and "maybe" for chemo given my age at diagnosis: 39. I decided to go with chemo. None, interestingly, recommended a bilateral mastectomy, I was pushed strongly by all doctors to go with lumpectomy and radiation.

I have dense breasts, calcifications hither and yon, new ones that are tossing me into a biopsy Tuesday and have had two biopsies for scares in the past (fibroadenomas). I think the important question for me is, did I REALLY think with my history I was going to avoid biopsies and scares with my breasts? Really? The way it looks, maybe this latest thing was there the whole time (it would, however, make me one unlucky 41 year old, especially as I'm BRCA neg).

This latest round has destroyed my husband and my mental health for a week, and I really can't overstate it. We've been weeping, high as a kite, hitting the Xanax, and the beer. We are devastated, freaked out, and ill from the worry. If I'd really thought harder about this, I would have been more aggressive about the mastectomy option. My husband is advising me strongly for it, so we'll see what happens!

Edited to add: my take on DCIS is they really don't know which are going to be problematic, and grade/histology are not rock-solid indicators. I think grade, based on my experience with Oncotype and other women who have gotten shockingly high scores with low grade, can be very questionable as a prognostic factor.

LtotheK · July 2012

Please also note Oncotype scores assume radiation and hormonal treatment. My "low" score of 12 = 16% chance of distant recurrence, 8% with hormonal, both assume I did radiation.

Nanam · July 2012

Gumshoe - just for the record I'm in BC, Canada also and every doctor I had including my GP, surgeon, plastic surgeon and RO all referred to it as cancer. I'm just starting radiation even after a mastectomy and am told I'll need a breast exam on the mastectomy side every 6 months and a mammogram on the remaining breast every year. So I'm sure there will still be a bit of "wait and worry" anyway but I expect it to be less and less, the more time that passes.

gumshoe · July 2012

Nanam -- Well at least some of them have it right. It really peeves me that all of mine (2 GPs, 2 surgeons, radiation onc, and medical onc) said it was not. Seems like they can't even agree in the same province. I'm outside of Vancouver but really, we're all in the same area!

CMartin · July 2012

Hi all. I'm kind of new here and have been "hanging out" on an IDC thread. I wanted to check in where I have some real experience.

Reading all of your posts is heart wrenching, especially the indecision and uncertainty.

Beesie - although I couldn't read prior to surgery because of the anxiety, my husband read your posts in our decision making process (as if we had a decision) and found your input invaluable. We can't thank you enough for your dedication.

I sat down with my BS and said that I was frustrated because of the debatable aspect of DCIS and the uncertainty of treatment (he had diagnosed DCIS in the left breast, lumpectomy, two spots, no clear margins on the spot agains the chest wall). When presented with my statement, he said you don't have a decision. I'm thankful that he saw it as dangerous, treated it as such, and didn't allow me to chase the unknowns.

I've since opted for a BMX and have no regrets. The margins were clear so no chemo or radiation has been recommended. It's different, I'm numb, I don't like tissue expanders, blah, blah, blah, BUT the anxiety is gone, the CANCER is gone and I'm moving forward.

My biggest encouragement would be not to chase the unknown to the point of putting your mental or physical health in jeopardy by playing Russian roulette. Make the hard decisions. I haven't really read anything on here where someone has said, "I treated it and I regret it", maybe only that they wish they'd taken a bit of time to make an informed decision.

I had time (relatively speaking-mammo 3/7, BMX 5/21) which was brutal but allowed time for decisions to be made.

I'm posting my blog with more of my journey. I hope that someone finds it helpful.

http://www.dcisiscancer.blogspot.com/

Cindy

rosetx · July 2012

Cindy, I just read your blog. Thanks so much for posting. I'm just a couple of weeks behind you timewise and made the same decision for treatment. I hope all continues to go well for you.

proudtospin · July 2012

just back from my biopsy, have to say, a reoccurance is hard to get my head around as yet. Hate that the techs recognised me from 4 years ago.

glad I accepted the offer of a survivor pal to go with me as I did not reallize how much harder it is the second time

results in a week so will try to put it out of mine till then, not sure if I will successful or not

maize · July 2012

proudtospin,

It's difficult to wait for the results. Wishing you the best of luck!

CMartin · July 2012

rosetx - Thank you. I just wish I could do so much more to encourage. I was so scared. I'm sure it's in the thread but how are you doing now?

proudtospin - I'm sure you're story is hear. I have a lot of cathing up to do. Is your recurrence after lumpectomy or mastecomy? I'm sure post mastectomy is possible but couldn't begin to imagine.

Have I got cancer or haven't I? DCIS confusion...

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