Next steps: Information gathering and making a plan.
The Husband and I are planners. Good planners.
After a weekend of diagnosis digestion, we set up a series of meetings with doctors in Santa Barbara: oncology, plastic surgery, radiation oncology and my surgeon. (I say "my surgeon" because she did the biopsies and made the diagnosis.)
The result of these meetings were pages and pages of notes, about 38 in total (yes, seriously), all full of various opinions and dizzying strategies.
Because we still had a lot of shock in our systems, I brought my laptop with me so that I could document (nearly) every word. This documentation helped my husband and I further our digestion process. Additionally, we were able to read (and re-read) my notes to help us in our decision making process.
A huge Silver Lining (SL) during this initial information gathering was that I was seriously impressed with all of the physicians we met. They were compassionate, punctual (which is a big deal to me), professional and articulate.
As you may recall, I have four lesions in the right breast and three lesions in the left breast.
We know what is going on in the right breast: FBC (F-Bomb Cancer).
So, during the information gathering period, I had a PET-PEM scan (a scanning system that provides functional imaging specifically for breast cancer detection to try to figure out what is going on with the lesions in the left breast as well as an enlarged lymph node).
Did I forget to mention that lymph node? Sorry. It jumped out on the MRI, showing activity, and definitely warrants further investigation. The PET-PEM was inconclusive, meaning that it was not possible to determine what is going on in the left breast. In all likelihood, one if not all of the lesions are either cancerous or pre-cancerous. The only way to tell for sure is with an MRI guided breast biopsy. Ugh. If I had decided, however, to go straight with the double mastectomy, that test wouldn't have been needed. Hmmm...
Truth be told, I had already decided to do a double mastectomy. There was no question in my mind. If someone has breast cancer in one breast the likelihood that it will appear at some point in the other breast is high enough to warrant concern, I was told. Why live with that very real worry everyday? Plus, I'm all about symmetry. Why do one without the other? It just makes common sense, for me, to do both at the same time, especially since the odds are stacked against me.
I was also very inclined to do the reconstruction at the same time. I thought, why have two major surgeries, if I could only have one? Now I'm all about making the right decision, at the right time, for the right reason. In fact, it is a philosophy that I try to live by and this situation was no different. So, in my decision-making process, I didn't want to jeopardize any treatment options just because I wanted to consolidate surgeries. Therefore, I was keeping all options open, but hoping that doing the double mastectomy and reconstruction simultaneously was a viable option.
In the meantime, my husband and I were referred, by great friends who are incredibly knowledgeable and experienced in this field, to Armando Giuliano, M.D., who is based at St. John's in Santa Monica. He is the father of the sentinal node biopsy, which has changed the way breast cancer is treated. He was described by a surgeon friend of ours as being the "best breast surgical oncologist, scholar and gentleman." Could there be a better recommendation? I don't think so. In addition to having gravitas in the field, a very good friend of mine from Santa Barbara also had breast cancer and worked with him. And sang his praises.
Working with him felt right. In fact, it felt like we were exactly where we needed to be. That leads me back to the subject of intuition and its value in my life (discussed in my first post). I am a firm believer in intuition. In fact, intuition has been playing a wonderfully significant role throughout this entire process. And I'm listening!
Dr. Giuliano connected us with a plastic surgeon colleague with whom he works very closely, Dr. Jay Jensen. It's very important, by the way, for the breast surgeon to work closely with the plastic surgeon. After our appointment with Dr. Giuliano, (literally, right after) we met with Dr. Jensen. There was an incredible synchronicity and seamlessness to that day: SL. We were told by both surgeons that doing a double mastectomy made perfect sense and is a completely reasonable decision. I am nothing if not reasonable. Not doing reconstruction was not given as a viable option. It is better, we were told, to do the reconstruction simultaneously because of the fresh tissue, superior aesthetic and skin preservation.
I asked about the impact of radiation, post-reconstruction (if I have to have it, still TBD). Dr. Jensen told us that all radiation will render the outcome less desirable and that I will have radiation effects that I won't like; however, doing reconstruction at the time of the double mastectomy is the much better choice. Hurray! SL.
At the end of that day, we even coordinated calendars and secured a date. I will be in the hospital for two or three days and then home. I felt so relieved to now have step one planned. I was told that chemotherapy and radition were not "a given" and that next steps would be decided after the surgery. Great. So much better to take FBC in slow, decisive steps.
My dearest, most wonderful girlfriend from Chicago, the same girlfriend who had FBC 18 months ago, is taking a week out of her life to be with us. She will be my personal nurse advocate in the hospital. (I believe it is always a good thing to have your own advocate in the hospital, by the way!) I am overwhelmed by her gesture of love. It was just a year and a half ago that I stayed with her in the hospital during her surgery. Crazy. She reminded me the other day that we need to start meeting at spas rather than in hospitals. No kidding. Then she reminded me, again, that: We. Know. How. To. Do. This. (SL.)
After settling on this plan, I have to say that I continue to be in an intangible state of emotional bring-it-on-ness.
Our next plan will be to discuss the diagnosis and treatment plan with our children, which I will discuss next week.
"Planning is bringing the future into the present so that you can do something about it now." -- Alan Lakein
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