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Dec 3, 2018 12:19AM
Dec 3, 2018 03:49AM
I am also from Long Island's Gold Coast if that's what you are referring to. I was diagnosed In 2012 with Stage 3 IDC, 5 cm, right, several nodes, HR+, Her2- . Chemo (ACT) shrunk the tumor by 99%. I also had 38 radiation treatments and took Femara for four years Had a modified radical mastectomy after chemo and 13 axilla nodes removed.
Mammogram every 6 months to left breast, tons of blood work every 3 months and I thought I dodged a bullet Fast forward to Oct. 2016 with a nagging 'pneumonia' that really turned out to be fluid in my left lung pleura with metastasis to bones and lymph nodes is the mediadtnum(thorax) . Stage IV
No one in my family ever had breast or gynecological cancer. Finally I insisted on genetic counseling and my insurance agreed to the $6,000 testing because of other cancers on maternal and paternal side: bladder, stomach, prostate, leukemia.
I was very surprised to learn I have a Chek2 genetic mutation. I had never heard of it. If I knew in 2012 what I know now I would have had a bilateral mastectomy and maybe considered a total hysterectomy.I am over 60 . I was told that due to the Chek2 mutation, every first degree blood relative has a 50% chance of getting cancer: specifically prostate, breast, stomach, pancreas. I am glad to know this so my children and siblings can be vigilant about testing I also read that a Chek2 mutation gave me a 70% chance of breast cancer at some point in my life. Lousy odds for sure....
The first node found at Stage 4 was on the left side,'healthy' breast and it was a lymph node above my collarbone, the supraclavical node. My hormonal and Her2 status hasn't changed after biopsy which you need to know for treatment . I am doing extremely well over 2 years after the stage 4 diagnosis I have used Ibrance and Faslodex for 17 months with success of nodes shrinking and Xgeva injections monthly halted the bone mets and led to healing . Now on monthly Afinitor with Aromasin and Xgeva injection every 3 months. Pleural fluid has dried up and I feel really good. I also had only 14 rads to my mediastinum which knocked out a node that was causing a cough I know there are brand new treatments for Chek2, which I believe is an oral drug called Lynparza or Olaparib. There were a few women who were in clinical trials and did well. I am not sure if you must be stage 4 to receive it. Having a double MX is not an easy decision. I am not sure if it would help me much at this point, but it has not yet been suggested I plan to question my onc further.
I hope this information gives you some insight into your genetic risks. Chek2 really seems to have been realized in the last 10 years. There isn't as much info as for BRACA 1 and 2 .
Wishing you good health and healing with whatever choices you make. It's a bumpy road for sure, but new drugs are out there so there is hope.