The wonderful world of survivorship

I had two visits to Women and Infant’s hospital last week. Neither were check ups although, in the words of Eli Dunn, one could be considered a “check up from the neck up”.

On Tuesday morning I met with Jessica, the genetic counselor. As you may remember from a previous entry my first round of genetic testing came back negative. Results for the second test came in and they were also negative! This basically covers about 96 % of the genes that we would be potentially worried about in terms of mutations that increase the chance of developing other cancers.

In non-medical terms, the genetic counselor basically told me that since I am negative for the BRCA mutations my chances of developing breast cancer are about the same as the general population. This is great news! The genetic counselor went on to say that there is a final test called the Ovanext test that tests for mutations in 21 other genes. The downside is that this test is fairly new in medical science, within the last 3 years. Depending on the gene mutation present we do not necessarily know the risks and implications of the mutation .

I am mulling over the decision to do the test. It will ultimately be dependent on the out of pocket cost. Unlike the BRCA testing, insurance does not necessarily cover the cost of a test like this because there is not enough data to support its findings.

To me, it really doesn’t matter what the results of the Ovanext test are because it likely would not tell me much more than I already know. The only exception would be if there was a mutation in one of the five genes that are connected to Lynch Syndrome. If there was a mutation in one of those genes, the lifetime increased risk for colon/uterine/stomach cancers are greater than the general population. Lucky for me I ditched my uterus months ago so we can cross that one off the list. If there was a mutation we would know to take preventative action by having an annual colonoscopy and endoscopy that would look for polyps before they got out of control.

As I have said before, based on the BRCA testing and my (lack of) family history, my genetic counselor and I are inclined to believe that a genetic mutation is unlikely; however, it is encouraged to pursue this line of testing due to the rare nature of this illness at a young age.

Once I hear from my insurance company I will make a decision. Another factor to consider in pursuing this testing is not what it will do for me, but what it will do for the future of medical research. In medical science, there will always be a guinea pig of sorts. Even if the OvaNext testing does not yield practical information for my own treatment, my DNA sample can contribute to the overall data pool. Eventually, enough data will be collected that trends can be found and my hope is whether it is five or fifty years from now, another young person will have better preventative care because of that. It will ultimately come down to out of pocket cost but I hope that I can make this minor contribution for the sake of science.

Switching gears-

I returned to Women & Infants later that evening for my first night in the “Transition into Survivorship” group. This will go on for five weeks and is meant to provide tools to assist in the transition into “the new normal”. We have a really wonderful group of women there. Mostly breast cancer survivors but there is one older woman that had ovarian. I believe that I am the youngest in the group, but there is a great person in the group closer in age to me. I actually met her during chemo although I do not fully remember (I was probably in my Benedryl haze). I feel connected to her on a level that I haven’t figured out yet. When I was speaking, I could see in her eyes that she not only heard what I was saying but also felt it. I look forward to getting to know her better.

I felt really comfortable with this group of women and when I was asked “what do you want to get out of this group?” the first response I had was “camaraderie”. I can see that need being met with this group of warm and strong women. In the first meeting alone we laughed and cried together. I see it being a beneficial few weeks.

One point that I want to highlight is that despite the trauma that each woman has endured, we all had nothing but wonderful comments about our treatment at W&I. Nothing about the stories everyone was telling screamed “poor me”. It was all about how lucky we were to have such great care within the family that is Women and Infants. That feeling was reinforced personally, when I walked into the room and spotted Allison and Diane, two social workers that I have grown close to. We were mutually excited to see each other. Had we been in any other setting outside of a hospital you would have thought that we were old friends that just happened to run into each other.

Hearing everyone’s story is so powerful. I find myself getting lost in their stories as I can picture it in such vivid detail. I feel the paralyzing fear associated with those haunting words “you have cancer”. I feel the anger. I even feel the needle pricks of an accessed central line. I feel the strength and the courage, and most importantly the determination of not letting cancer win. This group means a lot to me because I know that people are in the same “place” as I am, and probably feeling similarly. You never want anyone else to go through this but you find odd comfort in knowing that someone else feels your experience so deeply.

On a personal level, the facilitating social worker said something the resonated with me. My second response to “what are you looking to get out of this group?” I shared a life challenge that essentially has no immediate impact on my life, having children. Despite it impacting me more in the future, it has wounded me so deeply. I am only 25 and I am certainly in NO hurry to be a parent but goddamn it I wanted the option for later on. I shared with the group that I felt like something was taken from me. The social worker framed my disclosure by saying “You are mourning the loss of the future you thought you had”. Nothing was really taken from me but my own expectations. If I had been conditioned all of my life to believe that I wouldn’t have children of my own this wouldn’t be an issue. This ties back into developing my “new normal”. My old normal may have included having my own children but my new normal will involve being a mother by other means. I will eventually get there but I think this group will ultimately help me to cope with the anger and resentment I have surrounding this perceived loss.

Now that I’ve brought down the mood I want to end on a warmer note. I am so glad that I decided to do this and I look forward to the weeks to come.

Finally,

HAPPY BIRTHDAY ADAM SULTAIRE!!!! I hope my big brother has an incredible birthday! For everyone reading out in San Jose, limit him to TWO swirls.

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3 thoughts on “The wonderful world of survivorship

  1. So very happy that you have this wonderful support system. Thank-you Women and Infant’s Hospital… we will be eternally grateful!

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