DCIS: treatment vs. recurrence?

jadeblue

I understand that the survival rate for DCIS treated with lumpectomy + radition or by mastectomy alone is roughly equivalent, but I'm still trying to wrap my mind around that. If the breasts are removed, it seems much less likely that one could have a recurrence of DCIS or an invasive cancer, so I still don't understand what makes the survival rates equal. Is it because invasive cells will find another avenue by which to return if the breast tissue is no longer present?

Please forgive my newbie cluelessness. So many of you have been patient and helpful with all my questions and I'm grateful. I have high-grade ER-/PR- DCIS. So far, they think it's about .8 cm and no invasive cells were found in first biopsy. At first I thought I wanted mastectomy. Now I'm thinking that might be a drastic first treatment step. Part of me just wants my breasts gone so they can't cause me further harm, but I would like to make that irrevocable decision from an informed and not entirely emotional perspective. I want to do whatever gives me the best odds, but I'm not sure that mastectomy is safer than lumpectomy (with good margins, of course) plus radiation.

Thanks again for your help. -JB

redsox

The key concept to realize is that -- as long as patients get appropriate treatment, the survival rates for DCIS or Stage 1 or even most Stage 2 breast cancer patients are extremely high.  

With DCIS treatment with either mastectomy or lumpectomy + radiation (+tamoxifen if indicated) will mean that you are still highly likely to wind up dying of something else. 

If you have mastectomy the recurrence rate is <1-2%.  That comes from the small amount of remaining breast tissue after a mastectomy or from an unfound invasive component that had already escaped the breast before the mastectomy. 

If you have lumpectomy + radiation therapy, the initial tumor is removed surgically and radiation reduces the rate of recurrence in the treated breast by about 50%.  So how does that make the survival rates the same as mastectomy?  It depends on:

1. Patient selection -- if the tumor cannot be fully excised by lumpectomy or is very widespread in the breast, doctors generally will recommend mastectomy and not offer or discourage the option of lumpectomy + radiation.

2. For those offered and receiving the option of lumpectomy + radiation (+tamoxifen), the rate of recurrence with this treatment is generally <10%.  Not as low as mastectomy, but more than 90% will not have a recurrence.

3. For those who do have a recurrence the survival rate is still very high if they have good follow-up and find any recurrence while it still in the Stage 0, 1, or 2 category with very good survival rates.  Follow-up should be done at frequent intervals with regular self-exam and clinical breast exam, diagnostic mammography with maybe added MRI and/or ultrasound (with some new technologies coming down the pipeline).  If follow-up is vigilant any recurrence should be found early when it is still DCIS or very early stage invasive.  In that case a recurrence can be treated with extremely good success and the survival rates are still very high. 

jadeblue

Thanks, Redsox. You've given me so many good and thorough answers! First off, I appreciate the reminder about survival rates. That helps to hear.

Next, I think I'm getting tripped up over GENERAL vs. PERSONAL recurrence rates. I might just be feeling pessimistic these days, but it seems my *own* risk of getting this back (or worse) is very high because I'm 44, premenopausal, have high-grade DCIS, family history (mom) and am unlikely to be a candidate for Tamoxifen because of ER-/PR-.

It's that last one that's hard to know what to do with. I think I could be comfortable having a lumpectomy and rads and then starting on Tamoxifen, but knowing there's probably no chemo-preventative option for hormone receptor negative DCIS is unsettling.

But you're right -- a recurrence is also not the end of the world, assuming we're vigilant and catch it early. And being in the risk group most likely to have a recurrence doesn't mean I definitely will.

I know there are breast cancer calculators for women who've never been diagnosed. Any similar tool for women with DCIS or early stage cancer? Also, if a women with DCIS has IDC later on, does the hormone receptivity remain the same in the invasive form as it was in the DCIS? So many questions...

Best, Jade

redsox

Those are very good questions about your personal risk vs. general risk and about the acceptable level of risk of recurrence.  I think you should ask your doctors about those issues.  There are many factors that can influence your personal risk.  The risk calculators are useful but may not cover all factors or be subtle about distinctions for a factor.  Also, doctors have different views on the level of risk they think is acceptable.  So ask them:

What do you think is an acceptable level of recurrence risk?  ... over what time period?

What do you assess my personal recurrence risk?  Don't get hung up on the specific number -- all of these are estimates and may depend on the particular studies they use but you should get the general range.

Lee7

I think this calculator is similar to Adjuvant Online that oncologists use. If you read about the folks behind developing it, Mass General Hospital, MIT, and some others...it seems it would be reliable.  ANother tool to help with decision making.

www.lifemath.net/cancer

June2268

Jade so sorry you have to be travelling down this road as the decision on what to do is the hardest.  I too had small areas with DCIS and the rest of it was calcifications and had to have 2 surgeries as the margins were clear just another area that was not noticed in the beginning.  Mine was on the outside not the cleavage and even though I have to wear something in my bra everyday, I feel comfortable knowing that I did what I thought was best at preserving my breast even though the area was huge over 9 cm of calcification's, but dead as mine was high grade as well but all was removed.  So when all said and done I had with 2 surgeries over 18 cms removed.  I went from a C-cup to a A-cup and yes I do look very lopsided and my husband is fine with that, I am just not sure I could undergo all the surgeries related to mastectomy.  It is such a personal decision I am not even sure I am happy with still today.  I have had 2 follow up mammos with still not a clean report as they are watching a suspicious area, so please do all your HW and try not to rush to a decision and know that your mind will play games with you and we are all here for you......good luck with your decision.