One side mastectomy- I'm still coming to terms with it. Except for close friends, I've been telling people the surgery was to remove the cancer and the lymph nodes and left it at that. I'm not keen on reminding everyone about my prior history - although many people already know about it. It really has nothing to do with breast cancer anyway. Here is the current plan
In four days, I am going to have an axillary node removal and dissection. I've decided to go ahead and have a mastectomy on the right side at the same time. The surgeon will put in a couple drains which look like mini plastic footballs connected by a long tube to what looks like a mini drain trial inside of my body. Bleh. I have to empty the drain several times a day. Bleh. Even though I've been assured that it won't be a big deal. I do not like this idea.
Once the drain is removed and I'm healed enough, I will start chemotherapy - 3-5 months depending on the amount of lymph node and tissue involvement. I t will be cytoxan & taxotere. There is another chemo regimen that both oncologists said they wouldn't give me because it contains adriamycin, and I can't have any more of that. I'll probably lose my hair - and probably will just go bald.
Then, depending on the lab results from the surgery, it looks likely that I will have 0 to 6 weeks of radiation. That would be 5 days a week until I'm done. There is a possible study about hearts - radiation - I forget.
And, for the piece de resistance, tamoxifan for 5 years or until I go into menopause for at least 2 years, at which point there are some endrocin drugs that could be given. There's also a chance of entering of a 3 arm clinical trial to study the effect of bisphosphonates on bone density and recurrance rates.
There is small chance, that I might consider an ovarectomy, but at this point it seems unlikely and really far off.
After that I may or may not opt for reconstruction or reduction of the left to match the right. I may or may not have a mastectomy on the left. That will be up to me and how I feel about my treatments, risks, genetic status, menopausal status et cetera.
My doctors - for surgery - a super awesome doc, but I can't stand her @#* nurse. Nor do I like her resident who seems very knowledgeable and well intentioned but seems to have serious problems with patient communication. The surgeon is so good that I'm willing to deal the others around her.
Oncologist - not sure - met with her once - very helpful, but I had the feeling she was giving me the 'intermediate level of understanding' answers, she has a resident who I felt lukewarm about. Maybe I'd switch to another Doc at the same cancer center, whom I have not met but is top of the field and sounds like the kind of Dr. I like. He's hard to meet because of the difficult nurses and his travel schedule. Unfortunately, I'm seriously disliking most of the nurses and front desk staff. I may actually come to blows with the one I mentioned above. I would say that my experience with the breast care clinic (not including the Drs. or the lymphedema woman) epitomizes everything bad that you hear about a major cancer center that grinds through many, many patients. THis makes me sad because I've otherwise had great care at other clinics at the this cancer center. I looked at the their national ratings though, and found that I am not alone in being treated like a pain in the ass for advocating for my own care.
So, I will probably go to another nearby hospital to get my chemo from a different place. It isn't an NCI cancer center, but I know the breast cancer oncologist from when he was an oncology resident at the NCI center during my first cancer 19 years ago. He was very informative, knowledgeable and completely up on clinical research and trials. And - he knows my personal health history and the type of person that I am. The treatment options he gave me were the same as the sos
I will go back to NCI center for radiology. The radiation oncologist is great! Her clinic is great. She knows my previous oncologist, and she might be tied with him for most-amazing-Dr. She's world reknowned AND has the ability to communicate with the right mix of sensitivity and straightforwardness. And she has a Fantastic resident - my husbad and I love them both already. Radonc has a whole different reception and nursing staff than the Breast Clinic so I would not have to deal with unfriendliness and ridiculous road blocks to my own care.
I could go on. It has taken the majority of my waking hours since January 4 to figure this all out. My next steps are to research and plan complementary therapies (massage, yoga, acupuncture, healthier eating) that will make the allopathic treatments more tolerable.
Oh, yeah. And I'm trying to relax and be a mom.
