The Next Step

During the six week recovery from my mastectomy, I scheduled an appointment with an oncologist. An oncologist is a medical doctor that specializes in cancer. Despite all that I had been through, I hadn't actually seen an oncologist yet. Most of my care had been provided by the general surgeon I was seeing through the High Risk Breast Center. She was the one who recommended a referral.

I was anxious in the waiting room, I always am at these specialty appointments. As usual, my husband and I were the youngest people in the waiting room. The only people under 55 years old.  I would rather be surrounded by people my age, it would make the entire situation seem a little more fair. I know, life isn't fair. Still, being surrounded by much older people always reminds me that the cards I have been dealt suck.

The oncologist didn't need to do any sort of physical exam, she just sat down to talk to us about my history and what the next steps should be. I had brought a notepad to write down her suggestions, I didn't want to forget anything. She started by discussing my breast cancer. All of the extra tissue samples came back clear of cancer, so I didn't need chemotherapy. However, chemotherapy was still an option. In a study on breast cancer patients, the chance of recurrence is the remaining tissues was around 10%. A round of chemotherapy could decrease that risk to around 8%. Unfortunately, the studies aren't necessarily applicable to my situation, because most women in the study were at least 10 years older than me. Chemotherapy scares the shit out of me. I have seen first hand what it does to someone's body, and I didn't think that a possible 2% decrease in recurrence chances was worth it. My oncologist agreed, and she was also taking into account the long-term side effects of chemo at my age. I didn't even ask her what those could be.

Yes, my breast cancer appeared to be gone. But my risk for recurrence wasn't just about a mutated gene any more, now it was also about estrogen and progesterone. My breast cancer was tested and determined to be estrogen and progesterone responsive, meaning that the presence of these hormones in my body increases the recurrence risk, even though I don't have much breast tissue left. These hormones are made by the reproductive tract, specifically the ovaries. At the time, I was also taking a daily birth control pill that contained these hormones to help control my terrible periods (heavy bleeding leading to anemia, fatigue, fainting, and also mood swings, nose bleeds, and extreme pain). Having ovaries and being on birth control were both risks, although the doctor didn't have any studies saying how high of a risk.

I had more concerns than just the recurrence of my breast cancer. After all, the BRCA2 mutation isn't just about breast cancer. As I brought up in an earlier post, it is also increases the risk for ovarian cancer, pancreatic cancer, and a type of skin cancer called melanoma.

The melanoma is the least concerning of the four, because I can wear protective clothing and use sunscreen religiously to help prevent it. The oncologist said there isn't much to do to prevent pancreatic cancer, and the main thing to monitor as a sign of pancreatic cancer is weight loss. The pancreatic cancer risk scares me, but I try not to think about it since I can't do anything about it. I hope I never have to deal with it, because it is an aggressive and scary cancer.

You know what else is an aggressive and scary cancer? Ovarian cancer. Every time I think about it, I picture two small time bombs in my abdomen just waiting to go off. The oncologist was honest with me about the difficulties with screening for ovarian cancer. Transvaginal ultrasounds can find larger changes to the ovaries, but can't detect early cancer in the tissue. There is also a blood test, which looks for a tumor marker called CA125. The down side? How fast ovarian cancer progresses. The oncologist told me that the test could be negative one day, and a person could have advanced ovarian cancer within a couple of months. Well, shit. What is a BRCA2, ER and PR positive breast cancer girl to do?

The oncology answer: menopause.

Overall, the problem was those gosh darn hormones. But also, ovarian cancer. Ok, there are a lot of problems in my body. Too bad I wasn't born a man. For the next step for prevention, I had two options.

The first option: start leuprolide injections. Leuprolide suppresses the production of estrogen and progesterone. The injections would be given in the muscle, starting once a month then once every few months. It would put me into menopause, but I wouldn't need surgery. This would be a great option if I wanted to have children in the future. However, the injections don't help prevent ovarian cancer, just the recurrence of my breast cancer.

The second option: surgical removal of my ovaries. This stops production of the hormones, also removes the ovaries and therefore the risk of ovarian cancer. But this option isn't reversible. I would be in menopause for the rest of my life.

Two options, both of which mean menopause at thirty years old. I guess a third option would be to do nothing, and accept my cancer risks. This is basically the definition of being stuck between a rock and a hard place. I asked my doctor to give me some time to look into each option, and she didn't push me for a decision. I went home and had an immediate emotional break down. I hadn't known what to expect from the appointment, so I hadn't foreseen this development. It wasn't enough to have gone through a double mastectomy. The BRCA2 mutation is not forgiving. It is for life. It changes everything. I was still recovering from my surgery, but there would be no reprieve. I had more possible life or death decisions to make, weighing my cancer risks, and I wasn't ready to make them. I never would be.