Decisions, Decisions, Decisions - Ugh
In my last post I covered my surgery - a bilateral (double) mastectomy which I call a quadruple mastectomy because it included the axillary ectopic breast tissue in each armpit. My recovery went smoothly and I regained strength every day, and I continue to work on range of motion. Many areas are still numb, and may be for a long time.
Now on to the "Treatment" phase. Dr. Ulloth had recommended radiation because there were so many (4) tumors in my right breast and the lymph node with a spot that had broken open was on the right side. On June 13 I met with my radiation oncologist, Dr. Christine Cha. It turned out she was very familiar with me because she was on the Breast Board when Dr. Ulloth presented my case. She very methodically went over all the reasons why I would benefit from having the radiation treatment on the right side, and that it would not affect my heart. There would be 25 sessions scheduled five days a week for five weeks. The actual radiation would only be about a minute, with getting ready and getting back dressed would make it about 15 minutes. This, of course, would take place after chemo, if I would be having that.
For all of our doctors' appointments we have been taking our good friend Melanie to act as a "scribe." There is just too much information contained in the discussions to be able to try to take notes ourselves. I always go into an appointment with a list of questions. She makes sure we have covered all of those, but there are many other things in the rapid conversations with the doctor that could get forgotten or miss-remembered if it wasn't for her excellent notes. I highly recommend taking a scribe with you if you are having these kinds of doctor's appointments.
On June 21 we met with my medical oncologist, Dr. Anupama Kurup Acheson. She was delightful and full of all kinds of information. She will manage several stages of treatment, chemo if I have it and the hormone treatment for years. Eventually we got to the results of that Oncotype DX test that would determine the need for chemo or not. As I had dreaded, the results were not clean. My score came in at 27 on a scale to 50. Right in the middle. UGH! Now I would have to make a decision. The risk of reoccurrence was 16% when only using the hormone suppressing medication like tamoxifen or aromatase. It would to down to 13% if I did chemotherapy.
Making this decision would be hard, but when I learned what would be involved it didn't sound so horrible. There would be only two chemicals that would not affect my heart. There would be only four infusion sessions three weeks apart. I would get all kinds of anti-nausea meds, and one of the main side effects would be fatigue. I should be able to feel pretty good for half the time between session. Since the outcome of this test was what I had been dreading, having to make the decision, I had already done the worrying. If it will increase my odds of long term survival, I was willing to go for it. Paul, Melanie and I talked about it. The last question I had for Dr. Acheson was "What would you recommend your mother do if she was in my position." Her response was "Try it at least once." That gave me the feeling that there would be an out if needed. I appreciated that response. Also, when I told her I had gone from "Interesting" to "Complicated" and was going to use the word "Complex" for this next stage, she looked me straight in the eye and said, "You are a very nice person, but you aren't that special. You are right there with what we do every day." I guess that was quite a relief as well.
On the way out I scheduled the first three sessions and then was shown the infusion room where I would come four times. There were comfortable recliners and a snack area with lots of things to eat and drink. I could have someone with me and bring in food and my own entertainment. Doable.
Once home, I read through the chemo section of the books I've been using as references:
Just Get Me Through This! A Practical Guide to Coping with Breast Cancer by Deborah A. Cohen and Robert M. Gelfand, MD and
Dr Susan Love's Breast Book by Susan M. Love, MD, Sixth Edition 2015.
Of course I had many more questions, and called the doctor's office to get them answered. The triage nurse, Holly, called me back and spent time answering them all. Then she put me in touch with the nurse navigator, Julie. She was very helpful and had lots more information and tips. I'm feeling much better about the decision.
So, I'm set for the next phase of my recovery; chemotherapy. My infusion dates will be June 28, July 19, August 9 and 30. Radiation will follow after a few weeks recovery.
In the mean time, since I have chosen to not do reconstruction, I need to so something to make me still look a bit more feminine. My friend Melanie and I went "Boob and Bra" shopping the other day. I will eventually find just the right combination and the sales lady was an excellent fitter. She has ordered some things that should work perfectly for me.
All of this goes together with my theme or motto that I want to look back, in the future and say I have "No Regrets." It turns out that my favorite aria sung by Edith Piaf is "No Regrets."
Listen to this beautiful auria. English Version