We went in expecting to hear her - not really push, but maybe gently nudge - in the direction of a bilateral mastectomy (referred to as Mx after this), since that's what we heard when we were there two weeks ago. That's not what happened, however. She laid out two options that she said were nearly equal in terms of survival: lumpectomy/radiation/Tamoxifen is 92% survival rate, and mastectomy with or without reconstruction is 96%. However, survival rate is not what I wanted to hear; I wanted to know about recurrence rates. I didn't realize that she was discussing survival rather than recurrence, or I would have clarified. So I was really discouraged, because recurrence is a large part of what I'm using to make my decision. At that moment I told Andy that I felt like curling up in a ball in a corner somewhere and rocking - I wish I could just learn to expect that nothing in this journey goes like we expect; there is always going to be someone throwing a curveball at us.
I'll try to consolidate what we learned over the course of the (very long) day.
Lumpectomy alone has a roughly 30% recurrence rate within 5-10 years of DCIS itself, and the possibility of the recurrence being invasive. Radiation drops this to 15%, Tamoxifen decreases it further.
I learned that radiation does not only have the immediate skin burn issues that I thought; it can also affect the heart and lungs (and I am asthmatic, upping the lung risk issue), and there are other changes that can take years to appear, such as hardening of the radiated area, drawing in of the skin, and pain.
Known side effects of Tamoxifen (source: Cancer.gov) blood clots, strokes, uterine cancer, and cataracts. Other side effects of tamoxifen are similar to the symptoms of menopause. The most common side effects are hot flashes and vaginal discharge. Some women experience irregular menstrual periods, headaches, fatigue, nausea and/or vomiting, vaginal dryness or itching, irritation of the skin around the vagina, and skin rash. As with menopause, not all women who take tamoxifen have these symptoms.
In addition, the doctors on my oncology team are concerned because they believe my prior health issues point to an endocrine disorder, and are unsure how I will tolerate the Tamoxifen, especially as I am sensitive to many medications. If I try it and cannot take it, they will strongly advise against resuming my current progesterone and pregnenolone, which are working so well to keep my pain in check.
Should I choose this route, there will be monitoring at UAB every 3-6 months to check for recurrence. I know that the anxiety of monitoring will be hard to deal with (she understates, eyeing her bottles of Xanax and Lexapro wryly). If there is a recurrence, I will have to go with a mastectomy, and reconstruction will likely be difficult due to the skin damage caused by radiation - I will probably not be a candidate for the skin-sparing mastectomy at that point. There is also the possibility for further excision/lumpectomy if pathology shows that there were not clear margins at the time of surgery.
In my opinion, the basic pro to this route is the shorter surgery and recovery time, and the lack of psychological issues that tend to arise as a result of mastectomy.
Bilateral Mastectomy with reconstruction (yes, no reconstruction is an option, but not one I'm interested in)
I am a candidate for skin-sparing mastectomy, in which the outer shell of the breast, minus the nipple and areola, are left intact. The reconstruction option I would have, provided that my blood vessels are adequate, is the DIEP, (deep inferior epigastric perforator). In a nutshell, I get a tummy tuck and the skin, fat and blood vessels are used in the pocket left by the mastectomy. It's microsurgery, meaning it's very long and very involved, but has the best recovery time and there are no implants used.
The cons are largely obvious here: long involved surgery, possible complications, much longer healing time. I told the plastic surgeon that while I know it shouldn't be a consideration, I've wanted a tummy tuck since I realized that the skin from pregnancy was never going away. He said that no, it shouldn't be a consideration, but it's definitely a perk, and after all I've been through, I deserve a perk!
The pros are longer: no radiation, no Tamoxifen, no need for a change in the medication regimen that I know works. But biggest of all is that it drops the recurrence risk dramatically. There is no such thing as 100% risk-free even with a radical mastectomy, but this would be close enough for comfort. If I did have a recurrence, I would not look back at this moment and think "I didn't do everything I could have." Both the surgical oncologist and the plastic surgeon said that is not an insignificant thought process - many, many women go for the bilateral Mx for exactly that reason. This is an amazing forum thread that discusses my exact dilemma.
I realize that it may seem drastic to some who only see DCIS as "Stage 0" cancer. However, as you can see above there is so much more to breast cancer - it's incredibly complex and difficult to get a true handle on. As someone in the above-linked forum said, "Every recurrence of dcis can potentially be invasive. Then the whole process starts from square one." This, for me, is the deal-breaker: I cannot go through this again. The whole journey - from the day my surgeon looked me in the eye and told me I had cancer, to now - has changed me profoundly, in ways I'm still processing, and I know that the changes will continue for a long time. I was diagnosed with cancer two and a half months ago, and I still start in shock many times a day as I remember "Oh, my god. I have cancer." Cancer. The "c-word." The worst word I have ever heard directed at me.
There's a Facebook "slactivism" post that says something like "Stupid cancer. We all want a new car, a new phone. A person who has cancer only wants one thing... to survive. Put this on your wall in honor of someone who died of cancer, survived, or who is fighting against it now!"