Alternative to Radiation for DCIS

MMulder

Hi Bessie, you know what? I didn't know anyone replied.  For some reason I thought I would get noticifications thru email that would tell me I had an answer to my question.  I just thought no one answered.  I will go back and read it.  My DCIS was 3.5mm non invasive.  The biopsy got it all.  Surgical margins were 9x6x4cm, yes cm not mm.  There was no residual cancer in the surgical path report.  The oncologist said my risk was 12% without radiation.  Half of that if rads.  I am filling out the paperwork tonight for Dr. Lagios for another opinion.  Thanks for answering!

Beesie

12%?  I would be surprised if this number considers the very large size of your surgical margins, or the very small size of your area of DCIS.  Normally "acceptable" margins are considered to be 2mm or greater, so everyone with 2mm+ margins is grouped together when analysing recurrence rates. That might result in an average 12% recurrence rate.  But your situation is not like everyone else's.  I'm not a doctor and I have no medical experience, but I've been reading up on DCIS for 7 years and I find it hard to believe that your recurrence risk would be that high.  

From the MDAnderson OncoLog:  "...whole breast irradiation after lumpectomy for DCIS has been shown in numerous studies to reduce recurrence rates by as much as 50%... However, according to Dr. Kuerer, women who have small, unifocal, low-grade tumors that can be excised with wide margins (at least 10 mm) have a low risk of recurrence and may reasonably forego radiation."  http://www2.mdanderson.org/depts/oncolog/articles/10/1-jan/1-10-compass.html

A meta-analysis from last year:  "The risk of IBTR (ipsilateral breast tumor recurrence) was lower with a negative margin larger than 10 mm than with a negative margin larger than 2 mm, regardless of RT (radiation therapy) status.....We emphasize the importance of wider margins, but we equally underscore that RT should not be omitted except for the low-risk group."  Network Meta-analysis of Margin Threshold for Women With Ductal Carcinoma In Situ

From the NCCN Treatment Guidelines for Physicians:  "Whole-breast radiation therapy following lumpectomy reduced recurrence rates in DCIS by about 50%. Approximately half of the recurrences are invasive and half are DCIS. A number of factors determine the local recurrence risk: palpable mass, larger size, higher grade, close or involved margins, and age under 50 years.  If the patient and physician view the individual risk as "low", some patients may be treated by excision alone. All data evaluating the three local treatments show no differences in patient survival"  NCCN Guidelines Version 3.2012  Ductal Carcinoma in Situ  Page 10 (note that you have to register to be able to access the Physician's guide; the Patient's guide has much less detail)

Ultimately you have to decide what's right for you, but you need to have the best information possible, as it relates to both current practice and to your own diagnosis and prognosis, to make that decision. 

MMulder

The frustrating part is that the 2 oncologists we have seen did NOT take into account my specific diagnosis.  They follow the standard of care, period.  This is what all do here at UAB (University of Alabama in Birmingaham, a wonderful teachiing hospital) and St. Vincent's.  This is discouraging.  They even radiated a 1.5 DCIS with my same diagnosis except the size.  I think that is crazy.  I even took the BRAC test (just because I had a rough year last year and the insurance would pay for it)  and I am negative.  There is NO family history of cancer at all on either side of my family of any kind.  I never worried about getting my annual mammograms but I know better now.  I never knew the high stats for breast caner.  For my third opinion however, I am going to do the consultation service with Dr. Lagios.   This researcher from UAB that we met yesterday encouraged us to get a 3rd opinion or however many we needed.  Very open.  However, she said she didn't trust Dr. Lagios' pathology.  Something about the way they cut the specimen and that the study was biased.  Doesn't every trial have some bias.  I mean if you want specifics they have to bias who is in the study.  It is crazy.  I can't believe how contraversial this is.  It makes a person crazy.  My husband has read every piece of information on this that he can.  He knew every study that the Dr. mentioned yesterday (as a researcher she spouted off trials for about 30 minutes, no kidding) except for one and IT stated I was at 6% risk which personally I could live with.  One more thing, I was on birth control for 5 years when I found out I had cancer.  Maybe the cancer would have never grown if I hadn't taken it.  I never wanted to take it but couldn't get my periods regulated so went on a low dosage to straighten me out.  Who knows?  My growth rate was only 2%.  Because of a move to another city and a partial knee replacement, I missed 2 mammograms which I never do but it happened.  So within a 3 year span I got 3.5 DCIS.  2012 was an awful year.  2013 isn't looking better.  Going to a funeral of a dear friend on Sat. who had Ovarian cancer and fought it for 10 years but then got into her brain.  My age with 6 children.  3 of them are adopted from Ethiopia.  Lord have mercy.  The sadness is overwhelming.  I know this post is loaded but could someone recommend some information on what to eat to help with preventing estrogen receptor cancers?  I am reading a book  now but soy is controversial as well.  My husband and I exercise and I use protein bars for after workout.  Need help with this.

Beesie

MMulder, I was reading a discussion thread in the DCIS forum that struck me as being somewhat relevant to your situation.  This is someone who was diagnosed with DCIS a couple of years ago, had a lumpectomy + rads, and now has a new diagnosis of DCIS (I believe it's not a recurrence but a new primary).  Because she had rads previously, the recommendation now is that she have a mastectomy.  This seems drastic to her but she has few options now.

This raises another consideration for you.  You can only have rads once on each breast. So if you have rads now, and if you are diagnosed again - either a recurrence or a new primary - your option then will be either a lumpectomy without rads (which likely will be riskier because you probably won't have margins that are anywhere near as large as they are with this diagnosis) or a mastectomy. 

Your position on this might be that if you are diagnosed again, there's no doubt that you will have the MX.  In that case, this may not be a relevant point.  But if you aren't certain about that, this should be another factor in your decision. 

Thinking about your current diagnosis, it seems to me that your risk of a new primary - which could happen at any point in your life - is probably considerably higher than your risk of a recurrence related to this diagnosis of DCIS.  A recurrence happens when a few rogue cancer cells remain in the breast after surgery.  If these cells are not killed off by rads or hormone therapy, they will take hold and start to develop again.  That's a recurrence - it stems from the original cancer.  The likelihood that a few cells may be left in the breast, and therefore the risk of recurrence, is greatest in situations where:

- The margins are close. It certainly makes sense that the smaller the margins, the greater the risk that some cancer cells might still be left on the other side of the margin, i.e. still in the breast.

- The DCIS is multi-focal or multi-centric. In other words, more than one area of cancer was found which means that it's possible that there could be yet another area of DCIS that wasn't discovered and removed.

- The area of DCIS is large and/or the DCIS is high grade. DCIS is stuck inside the milk duct so the only way that it can spread is by expanding within the ductal system of the breast.  As it spreads, it sometimes 'skips', leaving a small space and then starting up again.  The risk that there might be some gaps (which could be seen as being clean margins) is greatest when there is a large area of DCIS or if the DCIS is high grade.

Looking at your pathology, you don't seem have any of these risks. You had a small single focus of grade 1 DCIS. You had such a large area of breast tissue removed that if your DCIS had 'skipped' in the duct or if there was another focus of DCIS, it almost certainly would have been found in that large amount of breast tissue. If we assume that your area of cancer (that was removed by the needle biopsy) was about centrally located within the area of removed tissue, your smallest surgical margin is probably around 2cm in size. Cells from that original area of low grade DCIS are not likely to have moved more than 2 cm away from the original focus. So by all measures, your risk of recurrence seems to be extremely low. 

What is probably a greater risk is that you might develop a second breast cancer anywhere in your breast (or in the other breast), an unrelated new primary diagnosis.  Anyone who's been diagnosed with BC one time is considered to be higher risk to be diagnosed again. If this were to happen (the odds are still against this - most women are only diagnosed one time), it could happen now, it could happen in 5 years, it could happen in 25 years. The diagnosis might be completely different. It might have the same hormone status and grade, or maybe not. Your current diagnosis is about as favorable as they come; another diagnosis might not be as favorable.  If you have rads now, your options then would be more limited, since you would not be able to have rads again.

I am not suggesting that you shouldn't have rads - you need to make the decision that's right for you.  But to make that decision you need as complete a picture as possible.  The fact that you can only have rads once is one more factor that you may want to weigh into the decision. 

I don't know if you've been reading the DCIS forum.  If not, you might want to drop by.  You may find some of the other threads to be informative and helpful.

Have you contacted Dr. Lagios yet? 

MMulder

Excellent info. I am on my phone so will abbreviate when I can. We have found your info above as well. I will probably pass on rads based on the fact that my smallest clear margin was 4cm, the largest being 9cm, which would mean another cancer would be new. So, why have rads for a reoccurrence? BUT for peace of mind. I did fax my info into Dr.Lagios on Thursday and his assistant said I should hear from him by the 28th. On my way to TN to say goodbye to a friend my age who died from ovarian cancer. Will be a hard day. She had 6 children. Lord have mercy. Oh yeah my grade was Grade 2. I made a mistake on my settings.

CooieK

hey purple32, I'm investigating the necessity n side effects of radiation. Second rodeo as first was right breast, 2 cm, proton radiation, 3.5 years of ineffective hormone therapy. Now left breast, ER+PR-HER2+, 5 cm. I have great concern re heart n lung damage, n more cancer from radiation.