I went to my first oncologist appointments yesterday. Originally I was scheduled for the medical oncologist at 8am, the surgical oncologist at noon and the radiation oncologist at 2pm. Jim and I got up early (early for me, not him!) and headed out to the hospital, leaving Finn behind at our house with my parents. We were there by 7:45am. The Cancer Center at Duke is quite a beautiful building and is a nice place to visit, if you have to have cancer.
We got called back to see the doctor pretty quickly and didn’t have to wait too long. The slight delay was because she saw that I had a large gap in appointment times and she got the scheduler to change my radiation oncologist appointment to 10am so we could leave earlier. It was a good thought… unfortunately my next appointment didn’t get out until after noon so I was late to my noon appointment. By the time all was said and done, Jim and I left the hospital around 3pm. That’s almost a full days’ work!
I think I have been holding it together pretty well… I have had my brief moments of tears, but then I get positive again. Despite my positive attitude, I was nervous. I knew I had cancer but I still hadn’t heard for sure if I had inflammatory breast cancer. From everything I read on Cancer.gov I had the signs of it but they typically do a skin punch biopsy to confirm it. I really didn’t want inflammatory breast cancer because it is automatically at least stage 3… I learned that this type of breast cancer is a clinical diagnosis and even if my skin biopsy doesn’t indicate it, all other signs indicate that I have inflammatory breast cancer. At least, they can’t feel any abnormal lymph nodes!
We can’t get the final staging until we get a PET scan, which is scheduled for the beginning of next week, but full steam ahead with preparing for chemotherapy. I found out that there are not a lot of options in the treatment of this type of cancer. Standard of care is chemotherapy for 16-18 weeks, about a month to rest and let my white blood cells come back up to normal levels, then surgery (more on that later), then another month or so to let my wounds heal, and then radiation for about 6 weeks. All combined, this is about nine months. I’d rather be having another baby instead of dealing with this, but that’s not the cards that are dealt to me.
So, for surgery there are really no options with inflammatory breast cancer. I will be having a mastectomy with all lymph nodes removed from under my right arm pit. Because it is inflammatory, they will not do lumpectomy. They also will not do immediate reconstruction. If I choose to do reconstructive surgery that will be something I can pursue after radiation therapy is completed and I am healed. They don’t want anything done, unnecessarily, that could result in delayed healing and subsequent delayed radiation. I actually have decided I don’t want to have reconstructive surgery… I’m going to stay flat. I suppose I could change my mind, but I don’t think that will happen.
I may actually be having a double mastectomy… it all depends on the outcome of my genetic testing. If I have the breast cancer genes, then I’ll be having the second breast removed at the same time as the first one. That is apparently the exception to the rule of having an “unnecessary” procedure before radiation.
So what are the plans for this week? I will be having my port put in Thursday morning. On Friday, I have an echo to check my heart, an ultrasound of my lymph nodes under my arm, and a meeting with the pharmacist to go over my medications. I’m pretty sure that I have a good grasp of my medications but I have no problem participating in this aspect of my multidisciplinary team.
Next week, I have the PET scan on Tueday and then on Thursday I have my port accessed for the first time to get more labs and I have a visit with the medical oncologist. We will find out the final staging as well as what is the most appropriate chemotherapy regimen for me. She told me she wanted me to pick out what day of the week I want chemo, so I’ll be figuring that out as well. I’m 99% sure I’ll be starting chemotherapy the week of 3/13… it’s all happening very fast, but I know that’s so I have the best shot of eradicating this cancer.
That’s pretty much all I have to say. I have purchased a pretty Kelly green yarn to use for knitting a cardigan. I have had the pattern for a couple years and never got around to knitting it. I figure, I’ll have some time on my hands when I’m getting chemo, and I’m hoping I feel up to knitting away the hours.