I know it has been awhile since I have posted an update, and I apologize for it taking so long. Sometimes I get in a place to where it is all I can do to go through the motions and make it through each day. When I last posted, I had recently started back working full time, and there were still some unanswered questions about what my treatment would look like going forward. I felt like I was in some kind of limbo. I was thankful that the surgery had gone so well, but it felt very much like my life was on hold until we knew what my adjuvant therapy would be. When people say that the worst part of having cancer is the waiting, they are absolutely not lying. The waiting has been worse than any procedure I have had done, I promise.
So, with that being said, we finally have some answers! My oncologist had sent samples from both of the tumors that had been removed from my breast for something called oncotype testing. This particular test is run on the tumor to look at 21 genes to determine and assign a recurrence score on a scale of 0-100. The oncologist will then use that score to make a recommendation of whether chemotherapy would be beneficial for the patient to prevent recurrent cancer. When the oncologist talks about recurrent cancer, they are speaking of more cancer that results from the original tumor, not the possibility of a new cancer occurring later on down the road. Basically, they want to make sure that if any cancer cells got loose in the body that we are unaware of, they aren’t fed and allowed to grow and multiply. In some cases, chemotherapy can be beneficial to kill off any errant cells. In other cases, hormone blocks or forced menopause can be sufficient.
In my case, both of my tumors were strongly estrogen and progestrone receptor positive, so hormone therapy was pretty much a given. We just needed to know if chemotherapy would also be a benefit. She sent the two samples off, and lo and behold my health insurance company only approved one and denied the other. We were perplexed. How could it be important enough to approve for one cancer, but not necessary for the other? Someone make it make sense. For the tumor they approved (the left breast) I was given an oncotype score of 8. This was great news! Scores from 1-10 are considered low risk for cancer recurrance. However, without the results for the tumor that was in the right breast, my oncologist wasn’t exactly sure of what she wanted to recommend for treatment.
She went ahead and scheduled an appointment for me to come in and talk with her about potential hormone therapy in two weeks. She hoped that she could file an appeal with the insurance company to get them to cover the second oncotype test and have a result for me by the appointment. That appoinment was on Wednesday May 8th. The first thing she told me when she came into the room was unfortunately she still did not have the result from the test. The insurance company had said that she had sent in everything necessary, but it still just showed “in process.” How ridiculous. Regardless, she explained that she was fairly certain that the result would be pretty close to the result of the other cancer, so we could go ahead and talk about hormone therapy. She did not believe that chemotherapy would be beneficial at this point.
She the proceeded to explain how hormone blockers like Tamoxifen work as well as how it works to be put into menopause via monthly medicinal injections. No lie, neither one sounded like a great option. However, on the off chance that any cancer cells got free and are floating around in my body, we need to be sure they won’t be fed. She asked how I felt about going ahead and going into menopause. I told her that it wasn’t my first pick. I am working full time, trying to keep up with an 8 year old, going to Italy in June, having reconstructive surgery in August…. It just felt like such a big thing to put my body through on top of everything else going on. She was very understanding and suggested that we start with the Tamoxifen and go from there. I have a televideo appointment with her in two months to see where we stand.
When I left the doctor’s office, I was pretty frustrated. I just couldn’t understand what the hold up was with my health insurance company. I wanted to be able to know for certain that what we were doing was the very best option for me, and I wouldn’t feel secure in it until I got that second oncotype score. I decided to call them. They answered, verified my identity, and asked why I was calling. I explained my situation to the person on the other end. I told her how I had two different types of breast cancer at same time, one in each breast. I explained that we had done the bilateral mastectomy and were just now trying to find out what type of therapy would be best to be sure that the cancer would not reoccur. I told her that they had only approved the oncotype test for one of the tumors, but not the other. I explained that we really needed the result of the other tumor to be sure that we were choosing the most effective adjuvant therapy to prevent recurrence. I asked if there was anything that I could do to facilitate the process. I was told that only the provider could work with the insurance company on requests like this. I comfirmed that she was telling me there was no way for the patient to advocate for themselves when they were the ones whose lives were turned upside down due to this horrible disease, and she sympathetically said unfortunately only the provider can discuss it with them. I was so disheartened. This was my life we were talking about, but I didn’t even have the authority to talk about it or advocate for it. I went ahead and went to work, and tried to put it out of my mind.
Fast forward several hours, and I am at home talking to my 20 year old when the phone rings. I don’t recognize the number, but I decide to answer it anyway. It is my oncologist. She has magically gotten the result from the other oncotype test. The risk of recurrence for the tumor in the right breast is ZERO PERCENT! Zero percent folks! When I tell you that a weight lifted… I don’t know if my calling the insurance company had anything to do with the result coming through, but please don’t ever stand down from advocating for yourself. You never know where it might just make a difference.
Here is the plan going forward. I am going to start taking Tamoxifen next week. This is a hormone blocker. Let me take a second to give a high overview of how it works. My cancers were strongly estrogen and progesterone receptor positive. What that means is that the individual cells have receptors on them that allow for estrogen and progesterone to feed them so that they can grow and multiply. The Tamoxifen will actually sit inside the receptors and block the estrogen and progesterone from getting inside. Common side effects are hot flashes (these seem to be almost guaranteed), trouble sleeping, hair loss or thinning, headaches, etc. The more serious side effects (super rare) are blood clots and uterine cancer. I will be on this indefinitely as we evaluate and decide on the best approach. I saw the plastic surgeon today (Friday May 10th), and he said that everything is looking great! He deemed me fit for the reconstruction and said that his office would confirm our date by the end of the week next week.
It feels so good to finally have a set plan in place for the forseeable future. My sisters, aunt, and some family friends, and I are now in Panama City Beach for a vacation, and I truly feel like I can just breathe and relax because there are no longer any unknowns. Sometimes good news during recovery doesn’t look how you’d think. Sometimes it looks like this:
This was me on the way from my doctor’s appointment to pick up one of my sisters for our trip. I basically cried the whole way to her house. Sometimes I just don’t realize how overwhelmed I have been with everything until it all comes to a head and a resolution. These tears were from months of unknowns, uncertainties, and even other outside stressors that had nothing to do with the cancer. I was finally able to just let it all go and know that it was going to be ok. I am now sitting outside on the deck of the condo we’re staying in, listening to the ocean in front of me, knowing my sisters are inside behind me, and all is well. I feel that I can truly relax for the first time in a long time.
And with that, I’ll leave you with the words of a wise man, Mr. Usher Raymond (and apparently some of my first words spoken coming out of the anesthesia from the surgery),
Peace up, A-town down 😆✌🏻
