bilateral mastectomy, breast cancer, breast surgeon consult, Cancer Kitten, Cathy, Dana Farber, DCIS, DFCI, Ductal Carcinoma In Situ, Invasive Ductal Carcinoma, Lumpectomy, Mastectomy, oncologist, oncologist consult, oncology, plastic surgeon, reconstruction, surgeon, tissue expander, young woman with breast cancer
I just had five doctor/cancer appointments in three days. Talk about information overload! The details are a bit of a blur, but I am leaving last week with a better sense of direction and feeling confident that I will get through this, albeit hairless and slightly disfigured for the short term.
I went to the Dana Farber Cancer Institute (DFCI) this past Wednesday. As indicated in past posts, initially I wore my anticipation as fear, but thankfully as the appointments approached, I felt cloaked in calmness. My mom and aunt (I call her Mooie. My family is a topic for another blog!) planned to go with Bing and me, but the day before my appointments I felt more comfortable going alone with Bing. I wanted to process in my own time whatever it was that the doctors advised, and I knew that Bing was able to sit in silence with me, or talk through things as I needed. My mom argued that we could “use another pair of ears,” among other things, so at Bing’s urging I acquiesced, and my Cancer Ass-Kicking (CAK) Team was born.
DFCI first struck me as disorganized. From the misinformation I was provided during my phone registration (Supposedly I just needed to collect imaging and release my pathology slides; there was no mention of collecting medical records, but luckily I already did), to the lack of information about where to go at the Faulkner Hospital, we were hot, frustrated, and late when we arrived at the DFCI wing of the hospital. Once situated in the waiting room, a medical assistant tried to give me a questionnaire which I had already filled out and emailed in to DFCI. I started to question whether this was the right place for me, but luckily meeting the doctors eliminated my concerns.
While Bing frantically called our health insurance company to verify that DFCI was in-network (whoopsies, a slight overlook on my part), the medical assistant took me back to get my vitals. Once finished taking my BP/temp/height/weight, she told me that Dr. Katharine Carter, the breast surgeon, was ready to see me. I asked if I could sneak past the waiting room and meet with the doctor alone to begin, and she hastily guided me around a corner to the exam room. I’m not sure why I wanted to be alone so much. Partly, I didn’t want to start a cascade of emotion with my family if I needed to cry, and partly I just wanted to learn the truth of MY cancer by myself. It’s difficult to explain.
Dr. Carter sat down with me and immediately asked me about my travel plans, given that I live in Colorado. I explained to her that I have family in Boston and that I can travel (fairly) easily, and my reasons for coming to DFCI as a young woman with breast cancer. She seemed to understand and agree. Then she told me that after examining my records, she probably recommends a mastectomy of my right breast. Hearing that coming from a breast surgeon made me cry a little bit. I expected to hear this, but I REALLY did not want to. She examined me, palpating both breasts and lymph nodes, and we discussed further options. My lymph nodes feel fine, so that is good and complements the findings of my MRI and ultrasounds. She said she can perform a lumpectomy, but that she will have to remove a large “pie slice” from my breast. The cosmetic results of the different procedures were to be discussed with the plastic surgeon, Dr. Talbot, later in the day. She said she works with Dr. Talbot some, likes him a lot, and that he will be present if I want him to close after a lumpectomy.
Then we talked about the BRCA 1 & 2 “breast cancer” genes, and Dr. Carter directed me to speak with a genetic counselor, should I desire testing (which I did). Basically, these genes are “cancer suppressors.” If a person has a mutation or alteration in either gene (which is what the genetic test looks for), then there is a 50-85% chance in a lifetime of developing breast cancer. Since I already have breast cancer, if I have a mutated form of the BRCA 1 or 2 gene, the chances of me developing ANOTHER breast cancer are 25-42.5% (half of 50-85%). If I do not have a mutated BRCA 1 or 2 and have a successful lumpectomy, then my chances of recurrence will be the same as after having a mastectomy (higher than the rest of the population, but probably not 25%+ high). I opted to have the genetic test, and will use the results of this test when deciding whether to have a lumpectomy or a mastectomy. If I opt for a mastectomy, I will likely have a bilateral mastectomy, so that I can live my life without worry of recurrence. Ridding my body of breast cancer ONCE is enough of a life-changer for me!
I grabbed Bing and my CAK Team from the waiting room, and Dr. Carter reiterated our discussion to my entourage. It was during this discussion that I began to realize what a team effort cancer-fighting is. I thought I just needed an oncologist, a surgeon, a plastic surgeon, and a lot of volunteer drivers. Come to find out, I need a genetic counselor, a fertility specialist, a radiation oncologist, and who-knows-what else!!! Dr. Carter graciously fielded all of our questions, then left to map out our game plan and tag-in the oncologist.
Dr. Leroy Parker walked into the exam room, smartly dressed in a sport coat and polka dot bowtie, and took time introducing himself to everyone. He has been with DFCI for nearly 40 years, and exudes knowledge and confidence. He sat down and proceeded to ask me numerous background questions, relating to both my health and interests. I was intrigued that he seemed interested in my life beyond my medical records, and it made me wonder if he was fishing for illicit information.
He explained his recommendation for a basic regimen of chemotherapy, regardless of my surgical decision. I believe this is due to my cancer being a histologic grade 3, and the possibility that the cancer spread undetected. Chemo will hopefully kill any cancer cells that may have snuck out and are floating around my body. Remember, we will not know the stage of the cancer until after surgery, when my lymph nodes have been examined.
My chemo will begin 2-3 weeks following surgery, and utilize the AC drug combination, which is Adriamycin and Cytoxan. I will have intravenous chemo once for half a day every 2-3 weeks for 8-20 weeks. I will be able to have my chemo in Colorado. I will lose my hair (thank you, Cytoxan). The drugs will kill some or all of my eggs, causing premature menopause which may or may not last beyond completion of chemotherapy. The duration and intensity will depend on the surgical findings. During surgery, the sentinel lymph node will be biopsied. If it appears that the cancer has spread, then the lymph nodes closer to my armpit will also be removed. I assume that if lymph node involvement is certain, then the chemo will last for a longer time, or will be prescribed more frequently. Furthermore, if I have a lumpectomy, then I will need to have radiation 5 days a week for 6 weeks following chemo. Dr. Parker told us that having a good radiation oncologist is extremely important, so we have to determine where we want to do this, if I am lucky enough to beat cancer with just a lumpectomy.
After all of the cancer business talk, we got to learn a little more about Dr. Parker. Apparently, one of his daughters went to UM for OT school (I went there for law school), while another daughter lives in a small town in Alaska, where Bing’s uncle lives. It’s a small world sometimes! He told us he likes to visit Colorado to go elk hunting, and that he shot an elk that dressed out at 500 pounds last year. Of course, Bing was in his element talking elk with Dr. Parker. I stole a look at my mom, perched on the exam stool, and her face was unmoved. For those of you who know my mom, you can only imagine what she was thinking! I was certain she wouldn’t like Dr. Parker after his hunting revelation, but I guess she found him acceptable, despite that flaw. =)
My final doctor visit of the day was with Dr. Simon Talbot, a relatively new plastic surgeon with Brigham & Women’s Hospital. I am a little wary of having a younger (read: less experienced) plastic surgeon, but at the same time do trust that he has to be extremely competent to be with this particular practice, which famously performed the face transplant on the woman attacked by the chimp. I will talk with him further and look at pictures of his results, should I end up wanting a bilateral mastectomy. Anyway, Dr. Talbot practiced in a different office at Faulkner Hospital, so his medical assistant called me back and took my vitals for the second time that day. Bing and I then went into a small exam room, where we watched a ten minute video about reconstruction options after a mastectomy. OUCH. None of the options look all that lovely, but at least I have a better understanding now. It is important to me for Bing to understand the options too, since he has to look at the results!
Dr. Talbot briefly looked at me and my breasts, and explained that he thinks my best option, should I have a bilateral mastectomy, is to go the tissue expansion route and eventually have implants put in. He doesn’t think that I have enough excess anywhere to recreate breasts with my own tissue if I want them to be the same size as they are now. (And the answer is NO! I cannot accept tissue donations!). He passed around a tissue expander, a saline implant, and a silicone one, and explained the pros and cons. I asked him about the “Gummy Bear” implants which are still in trial for FDA approval. He said that they don’t implant them, but he can direct me to a practice which does, should I want to them.
A mastectomy involves complete removal of the breast, including the nipple tissue. The incision is made diagonally, so as to hide scars in the future should I wear a v-cut or low-cut top. Reconstruction involves the implantation of a tissue expander under chest muscle at the end of the mastectomy. It will be expanded once a week until I am a little bigger than the size I want to be, and will not be expanded during radiation (if required), as the skin tends to tighten. Then I have another surgery to put in the implants. I am not sure if nipples are created during the implant surgery, or if that happens in a separate surgery. The plastic surgeon will take scar tissue and form it into a “nipple.” The final touch involves tattooing color into the “nippple” and creating an areola. I will get to chose their new color. (Woo hoo! I finally get to CHOOSE something!)
Dr. Talbot thinks that I will have the best cosmetic results if I have a lumpectomy, despite the fact that a large portion of my breast will be removed. He also said he will close when Dr. Carter finishes the lumpectomy, should I so desire. If I have a lumpectomy, then after radiation I can decide if I want the left breast reduced or if I want to implant the right one and possibly lift the left to match it. Isn’t bigger always better?!? So much to think about!
Before Dr. Talbot sent us out the door, he took pictures of me topless (with my written consent – I’ve never done that before!) so I guess it’s I not necessary to see him again until it’s close to surgery time.
My head was spinning when we left the hospital. I felt good, even though so many things were still uncertain. I will consult with Dr. Carter again, and a radiation oncologist (should we go the lumpectomy route), once we have the BRCA test results, within 3 weeks. We ended up having a mini-party at Mooie’s house that evening. I easily (and accidentally) drank the majority of a bottle of wine, and demanded that everyone feel my lump before it is removed, for safety reasons. =)
My CAK Team (Bing, Mom, & Mooie):