The “what if” followed by the “what then”?

In Uncategorized on November 22, 2011 at 11:01 am

I was planning on writing on the Frankenstein factor tonight- something that is weighing heavily on my mind as I set up appointments with the people who are going to be removing random body parts and as I watch my sister struggle with losing her gorgeous locks, which we both know will grow back after chemo- but still- it sucks and I wish I could carry that weight for her.  BUT, something else came up in a post from my dear friend Jessie that I want to address as we head into the story of me and my sis.

When I began researching the BRCA gene it was when my sister was getting tested.  She had been diagnosed with breast cancer and surgery was a must, but the type of surgery was still under consideration.    Based on her history- she had endometrial cancer at 27, I think I was mostly seeking the argument as to why she would HAVE to have a double mastectomy and not get the lumpectomy.  I thought, if she has one of these genes, then she has to do the whole thing- no questions asked.  And selfishly, that’s what I wanted. Not for her to have the gene- I’m not that sick- but for her to have everything removed.   I was focused on not losing her, and instead of considering the fact that she might not want to have everything removed, I was secretly screaming- TAKE IT!  TAKE IT!  Just save my sister for fuck’s sake.  Now, it turns out that she has both the BRCA1 and 2 so in fact, in the end, no choice was given.  She had to have the complete mastectomy.  With that said- when I did the research, the experts didn’t all agree that prophylactic surgery is the only answer in all cases.

Some experts will say that if you are identified as having either BRCA 1 or BRCA2 that it simply means that you have to be diligent about mammograms- something we should all be diligent about to begin with.  The geneticist I met with at UCLA said that many of her patients who were identified prior to having children, opted to have their families and then get prophylactic mastectomies afterward.  She was quick to point out that having the gene is not the same as having cancer- it just gives you more information in terms of what you need to look out for in your own life.  Truth be told, with my family history, I had already begun more frequent exams at 35 at my doctor’s suggestion.

Now, my case is somewhat complicated by the fact that I have MS- and with a compromised immune system there are fears about what I have the capacity to fight.  Further, my MS flares up when I have a cold- god only knows what kind of state Cancer would put me into.  Also, testing positive for both genes, and having a sister who has already developed cancer, all point to the conclusion that there is really only one way for me to deal with the BRCA genes.  But, even with that knowledge, and knowing that surgery is imminent, my physicians and I are doing what we can to keep me on an MS clinical trial that I began 18 months ago.  With 6 months until its completion, I would hate for all of the results to be unusable because we had to stop the study early.

All of this is a lengthy way of saying that just because you decide to uncover the “what if” part of the question, doesn’t mean that you have to leap into the “what then?” part of the equation.  We are all different in regards to mitigating factors, and it’s crucial to remember that having the gene and having cancer are not one and the same.  My sister had no option- she had to take the most aggressive course of action.  For reasons quite apart from hers, I have to do the same.  But many women opt for alternatives, and there are as many answers here as there are questions.  I’m just a big believer in knowing what I’m up against.  With that said, if given the choice to find out at 17 that I had Multiple Sclerosis, or wait until 33 when I actually learned I had it- I’d definitely opt for the latter.

For Jessie- who brought this up in her post- it is a very individual thing as to whether or not we learn about the BRCA genes in ourselves.  But just know that my sister and I are at the extreme end of the spectrum and I hope with all my heart that we remain anomalies- this is one group we don’t want anyone we love to join.

Stay tuned for the Frankenstein factor and boob shopping online in my next installment.  Until then, I hope you are all with folks you love on Thanksgiving.  My sister, in between Chemo treatments, is hosting the holiday.  Her ability to do makes me the most thankful woman on earth.

  1. Amy, I’m following you on here and sending you and your sister very positive thoughts. Much warmth to you and yours for Thanksgiving! joe

  2. Oh Amy, I had no idea you and your family were facing all of this. I has been years but you have always held a special spot in my heart. My thoughts and prayers are with you and your sister and I will be reading my friend!!!

  3. Keep writing. I love you.

  4. Hey The Lev, Congratulations on your blog. What a perfect tool to sift through such huge events and decisions. I admire your tenacity as usual! I love you and miss you. Have a great Thanksgiving with you and yours. I am thankful you are my friend. –Rach

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