Decisions after cancer

I thought that going through the treatments for my cancer was going to be the hardest part of this journey. I would lose my hair, throw up a few times, be constipated (or have diarrhea), eat less – which would have been difficult for me since I enjoy a big meal— feel tired and weak, among other side effects that could temporarily come with cancer treatments.

Truth is, I find survivorship to be the most difficult part of this journey.

For example, I’ve been contemplating the idea of starting a family. I harvested my eggs prior to treatments to allow myself that option. But now that it’s getting closer to this possibility, there are some concerns.

The decision about having a child may impact my outcome. You see, my tumor’s diet consisted of my estrogen and progesterone.   The good part of that is that it makes me a candidate for a daily Tamoxifen pill, which is a good treatment for my type of cancer. Tamoxifen suppresses estrogen. But the problem is, I can’t be pregnant while I am on Tamoxifen. And, my Onco now wants me to take this preventive pill for 10 years instead of 5 years, my original plan. The latest studies show that 10 years may be better.

I will be in my mid 40’s when I am done with Tamoxifen. However, I want a child. I want to build my family now, while I am still young (not saying people in their 40’s are old, but it could be a riskier age for pregnancy). I don’t want to wait until I am in my mid 40’s. I also don’t want to base my life decisions on “what if’s.” There is no evidence that a pregnancy could put my life at risk. But there are no guarantees either, no matter which choice I make. That’s the saddest part for me.

Oh! And did I mention that my doctors recommended that I remove my ovaries by the time I am 42 because of my ovarian cancer risks? Well if I am going to go through this surgery, I might as well get a Hysterectomy. This would def. end the possibility of becoming pregnant.

I am aware I can always adopt but it’s not what I want to do right now. I want to feel my child growing inside my belly. I want to hear his/her heart beat. I need to experience the miracle of giving birth. I want it all.

So here I am wondering what would be the right choice for me. The decision will not only affect me, but my love ones as well. I am not sure how viable it would be for me to get pregnant after cancer. My Onco is not thrilled about me getting pregnant but she is not completely against it. There is no study showing pregnancy would bring my cancer back, but theoretically speaking, it is possible. As you know, pregnancy raises the level of estrogen in the body by a lot, and I will not be protected if cancer were to develop again.

I sometimes worry about the process of pregnancy – how painful would childbirth be? Would I survive it? But I often hear mothers say that the hardest part is not giving birth or being pregnant. The hardest part is to raise that child. Well, this is parallel to how I am feeling right now about my cancer journey. Yes, treatments can be hard but Survivorship has its challenges too.

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Multi-gene panel for cancer predisposition: Genes, Risks, and Recommendations

I understand that not everyone wants to know about their genetic risks for developing diseases, but some people do. Finding out about my gene has helped me make educated decisions about my life-style and health screening options. So, for those interested in knowing which mutations have been identified, here’s a list: Multi-gene Panel for cancer Predisposition.

If you decide to see a genetic counselor, she/he may have more recent information. Science is continuously advancing and there may be new developments already in the works.

 

If you decide to learn more about your genetic makeup due to a cancer diagnosis, and have been found a carrier for one of the above genes, you may be a candidate to participate on Prompt. I am currently a participant. Let’s help scientists and doctors learn more about cancer, so that eventually,  they can create better target treatments for everyone. And who knows, maybe a cure too.

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Seeking closure

After being diagnosed with breast cancer at the age of 32, and with the number of cancer diagnoses in my family, you bet I was going to try to find out why I got it. Although we don’t really know why we get cancer, I was “lucky” to find a possible cause to mine.

First, let me give you a breakdown of my family cancer history (all from my mother’s side. No cancer on my father’s side. Yet.):

Great-grandmother – breast cancer
Great-aunt 1 – breast cancer
Great-aunt 2 – breast cancer
Great- uncle 1 – prostate cancer
Great-uncle 2 – prostate cancer
Grandmother – ovarian cancer
Aunt – leukemia.

You see now why I wanted to look closer.

As soon as I was diagnosed with breast cancer, a group of genetic “investigators,” as I called them, at my hospital came to my rescue, wanting to know why I was diagnosed at such a young age. I wanted to know too, so I opted to be tested for the familiar BRCA1/2/BART genetic mutation tests which are linked to breast and ovarian cancers. Those results came back negative for me. I was simultaneously happy and skeptical. It didn’t make sense to me that I didn’t have a mutation considering my family history.

As the genetics team explained to me, these results didn’t mean someone else in my family doesn’t carry the BRCA gene(s), or that I myself don’t carry a different mutation. At the time, scientists had only identified a few mutations (such as the BRCA), and I was negative for those specific to my cancer.

But I was, and still am, determined to find out more about my cancer. I continued to look for more test options. Eventually I took an opportunity to do genome sequencing testing. As the genetic team described it, “sequencing” is a spellchecking process that looks at the sequence of “letters” in each gene, to find differences as compared to other people’s genes. Scientifically, a change, or spelling mistake, in a gene is called a “mutation.”

I had the option to learn about my genetic makeup as a whole or just focus on the results that will potentially impact my cancer outlook and treatment choices. I chose to learn about (1) genes related to all cancers and (2) genetic factors that may impact my future children (such as genes related to birth defects). I chose not to find out about my genetics for other common diseases such as Alzheimer disease and Parkinsons diseases. Why would I want to stress myself with knowledge about something else I cannot control or prevent? No thanks.

When I came to see the genetics team to receive my genome sequencing test results, my counselor had a big smile when she saw me. She knew how desperate I had been to get answers about my cancer. “I have good news,” she said. I stopped smiling and braced myself. Was she going to tell me I had no mutation?

She placed the results on the table and allowed me to read them. I had one mutation: ATM (ataxia-telengiectasia mutated) — a mutation associated with a moderate risk for breast cancer, and some lesser risks for other types.

“You look disappointed, everything OK?” She asked.

I was surprised. Even though I have breast cancer, I was expecting they would identify a mutation that was linked to ovarian cancer, too.

Let me explain.

I always feared getting ovarian cancer because of my grandmother. I saw her go through it. Seeing her go through all that pain affected me a lot, especially because she raised me. She was genetically the closest of my relative to have been diagnosed. In my mind there was a possibility I would get it too. I wasn’t worried about breast cancer because the only one who developed it from my family was my great -grandmother. In fact, prior to my diagnosis, my general doctors had told me that that particular diagnosis was too far away from my generation, so I had nothing to be concerned about.

One thing I learned after my diagnosis though was that both breast and ovarian cancers are linked. Once you are diagnosed with one, your risk of developing the other goes up. I had an observation too: My grandmother’s pathology report and mine were very similar although our cancers developed in different parts of our bodies. However, my genetic mutation was linked mainly to breast cancer not ovarian cancer.

Having identified the ATM mutation, my doctors advised me to get yearly breast MRIs, in addition to getting mammograms, which I had already been getting due to the density of my breasts. No additional recommendations were made.

Some people choose not to know about their genetics, especially those who have not been diagnosed with a disease. I can imagine the level of worry they may develop after learning they are a mutated-gene carrier. But it was different for me. For me, the more information I receive the better. Knowing my risks can help me take preventative measures. Plus I had already been diagnosed with cancer. I was desperate to find something to blame. And for the first time since my diagnosis, I felt a sense of peace. I was getting part of the answer to my puzzle.

There’s still a chance my mutation didn’t cause my cancer, but there is a high chance it did. And this brings me closer to finding closure.

I will be performing more genetic testing in February, specifically to look for risks associated with breast and ovarian cancers. I will have more information to share with my family— at least those who are open to receiving the information. But that is for another post.

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