Monday, August 4, 2014

The Breast Cancer Journey Continues

Over the past couple of weeks, Donny and I met with the rest of my breast cancer fighting team including the breast cancer medical oncologist and the plastic surgeon.

As with any serious medical diagnosis (i.e. Crohn's, Diabetes, etc), there is a lot of information to process when you first get the news; my diagnosis was no exception. At this point, Donny and I were having almost nightly conversations about the treatment options. We would discuss how we planned on managing the kiddos for each of the treatment options and how we saw our lives playing out in 5, 10, and 15 years. I found myself fighting off tears as I wondered if I would actually be around in 15 years...

Breast Medical Oncologist

Donny and I had a pretty good feeling that radiation was off the table after my consult with the radiation oncologist but we didn't really know what to expect from Ann Partridge (the breast medical oncologist who doubled as the director of the adult survivorship program). We didn't know what specific treatment option she would recommend but we felt prepared to accept whatever she suggested... the truth is, we weren't prepared for her suggestion - "you have to do what you're comfortable with," she said. Although I felt like I had no control when the twins were in the NICU, I enjoyed that our docs felt confident in their decisions and merely told us what was happening.

Now, I was in the driver's seat... "This is a life-altering decision. Why am I making the call???"

BUT, there were two reasons.
1) Adult medicine in the oncology world tends to focus more on what the patient feels most comfortable doing.
2) There wasn't a clear-cut answer. My situation was rather unprecedented. There is research out there for young women with breast cancer, young women without breast cancer but with stinky genes (BRCA1, BRCA2, etc), and young women post treatment for Hodgkin Disease - but none of these women describe me. Don't get me wrong, young women that have had a bone marrow transplant and TBI do get DCIS/Breast Cancer, BUT there are not many of us running around. (AML has about a 50% survival rate and the low number of women like me is further complicated by the fact that a while ago, the oncologists stopped using TBI for both children and adults with AML due to the plethora of side effects. Thus, we don't have large pools of data to drive our decision.) So Ann presented us with the options and let us chose...

The Options

1) Watch and Wait - The watching and waiting option is something that is a great option for some people. Unfortunately, watching didn't see feasible since the DCIS did not appear on my mammogram or MRI so we were nervous that this approach would be more along the lines of wait and then crisis. 

2) Full Lumpectomy with Radiation - This option was really not on the table prior to meeting with Ann but we discussed anyway. If I were a 'normal', older, non-cancer survivor this would have been the preferred option. The recurrence rates of DCIS/Breast Cancer are very close for individuals that choose this option and a full mastectomy; thus, it is pretty darn popular. HOWEVER, this option was already axed since the radiation department didn't really want to give me radiation. Additionally, all of the physicians felt that I was at a high risk for another round of DCIS/breast cancer within 5-8 years so it seemed like a more extreme approach was probably warranted.

Radiation for Breast Cancer

3) Single Total/Simple Mastectomy- The lumpectomy with radiation option works because it pulls out any cancer cells and then zaps any remaining trouble cells, essentially ensuring that you killed all of the bad stuff. A simple mastectomy can accomplish the same thing - but it is a little more extreme. The surgeon removes all breast tissue (bad and good) from the skin and muscle. Unlike Angelina Jolie's nipple sparing/nipple delayed mastectomy, the nipple and areola are removed with a total/simple mastectomy. Nipple sparing would not be an option in my case since I have a ductal cancer and the nipple is the mother of all ducts.

4) Bilateral Total/Simple Mastectomy - A bilateral total/simple mastectomy just means that the mastectomy is performed on both sides. Given my history of TBI and the fact that I have DCIS at 31 means that I am at a high risk of having another bout of breast cancer/DCIS soon. Thus, Ann felt that it was more than reasonable to take this approach. 

After much discussion, Donny and I both felt like a bilateral total mastectomy would likely be the best option but wanted to chat with the plastic surgeon.

Plastic Surgeon
Our visit with my plastic surgeon was incredibly informative and in many ways, reassuring. We went through the process of the surgery, recovery, and reconstruction (more details to follow in a future blog post). After chatting for over an hour, I had to give my plastic surgeon a decision. At this point, it seemed pretty clear. "I'm going to opt for the bilateral mastectomy" it felt weird saying it. This was a big damn deal but, in that moment, my decision seemed less monumental than when I bought my first car. So, my plastic surgeon started the process of scheduling the surgery with my breast surgeon. Since getting my breast surgeon and plastic surgeon in the an operating room for the same 5 hours is surprisingly difficult, the surgery could not be scheduled until the second week of September. Fortunately, that gives me a lot of time to prep at work, at home, and most importantly, mentally.

It goes without saying that this is just the beginning of this chapter of my life with cancer but I cannot thank everyone enough for all of the support that has already been sent our way! We are so blessed to have such amazing friends and family. You all rock!!!

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