Why I Chose Bilateral Mastectomy for a DCIS Diagnosis

It's been 15 months now since the finding of DCIS in my right breast.  I've wanted to blog about it ever since, but couldn't really wrap my mind around what I wanted to say, or how I wanted to say it. Emotionally, the past year has been a roller coaster, and I'm glad I waited so I wouldn't express a fleeting idea or feeling.

There's a sad amount of negativity out there for women who choose mastectomy for a DCIS diagnosis.  DCIS stands for ductal carcinoma in situ, which means that there are cancer cells in the milk ducts of the breast, but no invasion yet, which is to say that there has been no cancer detected outside of the ducts.  This is a very good finding for breast cancer! (Identifying cancer at this stage has been what we have been working toward, and now that we have succeeded in the early finding for many women, I am dismayed at the criticisms for treating it aggressively). Mine was found with the help of the 3D/MRI breast screening...on my very first mammogram.  There was no palpated lump, no reason to suspect any cancer. The intention was to establish a very clear baseline, since my breasts were very dense.  I was 41 years old.  The recommended age for mammograms had recently increased to 50, but my gynecologist was uncomfortable with the reasoning behind the change.  She thus encouraged me to have this test done.  Her caution perhaps saved my life, and certainly saved me from a lot of extra suffering, had the cancer been found a later date.

After more imaging (initial suspicion was micro-clusters found on mammogram) and a biopsy, diagnosis came back with DCIS grade 2, which means that it was a mix of aggressive cancer cells and non-aggressive.  It is an important detail to make clear that this is what was found on the biopsy.  It tells you nothing about non-biopsied tissue.  DCIS is naturally invisible on mammogram--it is only the resulting micro-calcifications that are sometimes present which alert us of a problem.  In fact, a friend of mine whom I consulted had the same diagnosis from her breast biopsy.  Very unfortunately for her, during her mastectomy, they found she actually had Stage 3 cancer!  Deep infiltration in her lymph nodes. Although her biopsy showed no invasion, there absolutely had been invasion elsewhere.  It only takes a tiny breakout through those ductal walls for the cancer to spread.  This possibility is more dangerous in younger women with a type of cancer which thrives off of hormones, like mine was (hormone-receptor positive).  

So which path toward future health should I choose? My initial reaction was to take the absolute safest route to avoid recurrence and/or spread, which was to just get rid of the breasts!  However, I wanted to give each option its fair consideration, so I did indeed meet with the whole team of doctors put together for me.  My options were the following:

• Single mastectomy of the affected breast, with our without reconstruction
• Bilateral mastectomy (both breasts, prophylactically for the non-affected side), with our without reconstruction
• Lumpectomy, six weeks of radiation (or alternative concentrated radiation), 10 years of tamoxifen (hormone therapy)

The mad rush was on...do all my research, meet all the doctors, and do it all as quickly as possible so we could get the surgery on the schedule and remove this cancer!  It was a very stressful time.

As I referred to before, while doing my homework, I found so many people critical of the mastectomy option where DCIS is considered.  I even had a friends blatantly (and insensitively) express to me that it seemed like an extreme choice.  I became defensive.  I understand the background behind a lot of this sentiment--it's a backlash to when women had no good alternatives to mastectomies, and now that we have a choice, there's a general push to "save the breast."  That's great for some people, and I honor those decisions. However, I would like to lay out the reasons I chose bilateral mastectomy (with reconstruction). I hope to support other women considering treatment and to educate their loved ones.

1.  The most important factor was the statistic a surgeon shared with me (with accompanying research) that for women under the age of 45 with DCIS who chose lumpectomy with radiation, there was a 26% chance of recurrence in 10 years.  Half of those recurrences would be invasive, requiring chemotherapy.  This information was critical for two reasons.  Foremost, it was the most specific study that looked at not only my diagnosis, but my age bracket.  The sample set was most like me, and it was a significant number of subjects.  Also, I found that recurrence rate to be very high--an unacceptable risk in my mind.  Others may find that number to be reasonably low, and choose to keep their breast, and I totally honor that.  It's a very personal matter.  

2.  Lumpectomy is often repeated because the margins are not "good" in the surgical biopsies.  One lumpectomy often turns into two, and sometimes more!  In hindsight, this probably would've been the case with me, since the affected area on the mammogram was only a couple millimeters large, but after the breast was removed, they found the DCIS to have spread to a volume around 2 cm cubed!  Again, DCIS is completely invisible to all imaging unless it has left micro-calcifications in its wake.

3.  Radiation is not fun, and there are risks involved, short-term and long-term.  Sometimes tissue is damaged enough to make reconstruction difficult, or at least to limit reconstruction options.  There is associated future cancer risk.  Burns and inconvenience of going every day for 6 weeks factor in as well, although those are temporary issues.

4.  Tamoxifen was not a drug I was interested in taking for 10 years.  Its effectiveness seems to be significant, but the side effects are bad enough that many women quit taking it, hence increasing their risk of recurrence.

5.  This was my second cancer.  I had melanoma at the age of 27.  Since my grandmother and her sister also had early-onset melanoma, it is highly likely that I have a gene, and often breast cancer and melanoma are linked genetically.  I did have DNA testing for the several genes known to cause cancer. I did not have BRCA-1 or BRCA-2, although an unknown mutation was present in my ATM gene.  Genetics is still in its infancy, however, and I was not comfortable ruling out the possibility a genetic link.  If there were a gene causing these two cancers, it would increase the likelihood of a second breast cancer developing, so I felt more comfortable removing both.

6.  Testing positive for hormone receptors scared me...I have many more years before hitting menopause, and any little cell that found its way to my blood stream would be fed its favorite diet and spread at a rapid rate.

7.  Reconstructing one breast to match the other is difficult when you are large-breasted, as I was.  It seemed easier to get a good "set" if the plastic surgeon could just start with a clean, symmetrical slate by having both removed.

8.  Mastectomy recurrence rate in the aforementioned study is 1-2%, all invasive.  That sure beats 26% by a long shot!

9.  Having had cancer before, I know what it's like to have that shadow following you around for years after...every illness, every lumpy lymph node is a terror you try to suppress.  Your mind wanders to bad places, and before you know it, you find yourself making a playlist on iTunes for your funeral.  (True, I did this!) I knew I wanted to decrease that burden as much as possible by lowering the chance for recurrence.

There absolutely are good reasons to choose lumpectomy as well.  Keeping your breast, not undergoing the difficult reconstruction, and more, are important to consider.  However, since that wasn't the route I chose, I'll leave that argument to someone else!  It certainly is a much more appealing option for older women, in some cases with near equal recurrence rates compared with mastectomy!

I hope that reading this has sparked more understanding and compassion for breast cancer victims and catharsis for those of you who chose a similar decision to mine.  More importantly, I hope it has helped someone on their journey through DCIS decision-making.  I wish to stress that I am not trying to influence one way or another, but just to share my own thought-process.  (I also am not a medical professional, so always consult your medical team before making any decision). Please honor all women in whichever decision they choose, and know that criticizing their choices is not helpful.  I am absolutely thrilled with my decision, by the way.  It's been a rough road, and being without my breasts has been harder than I imagined. Dealing with the loss of my breasts was a struggle I felt better equipped to handle than the possible guilt I would feel if I took the greater risk, ending up with invasive cancer down the road.

Thanks for reading, and please share if you feel so compelled.