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Anyone else have CHEK2 gene mutation? And have had multiple cancers?
Cancer | Last Active: Mar 11 10:27am | Replies (51)Comment receiving replies
Thank you for sharing your story. I'm so sorry you had to go through all of that. Yes sir it IS a terrible gene for sure! My oncologist I saw 2 days ago flat out said- We just don't know much about this gene because it's so rare! Ugh...not what a patient wants to hear. He recommended I go ahead & do the Radioiodine treatment, unfortunately & definitely get a hysterectomy this year to prevent the uterine cancer side of it. But without estrogen replacement therapy due to the gene mutation thriving on estrogen. And he's ordering an ultrasound of my armpit because of pain I'm having since double mastectomy surgery last year. Ugh...just so much still going on & my endocrinologist called me back yesterday about my Synthroid medicine. She's changing the dose again because of the awful side effects im having on the 200mg dose. Ugh...roller coaster, gotta love it.
Blessings to you.
By the way, I'm 50 now. I was diagnosed with BC at 47, skin cancer at 48 & thyroid cancer at 50.
Replies to "Thank you for sharing your story. I'm so sorry you had to go through all of..."
Bless you! Good luck!!
Did he tell you if it was a full or partial hysterectomy? I still have my ovaries so mine was only a partial 12 years ago. I still make my own hormones and haven't gone into menopause yet. My girlfriend had one ovary and uterus removed due to endometriosis and she is doing fine hormone wise. Something to think about.
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@colorado73
You've been through a lot in a short time. In 2013, I had my ovaries/tubes removed due to the BRCA2 mutation. We didn't know about the CHEK2 mutation until 2018. I asked my GYN at the time if he could just take the uterus too so I would never need another surgery and he wouldn't do it at my request because it increased risk. Now that I'm hearing more about CHEK2 and your plan, I really wish he would have! I don't do well with abdominal surgery at all so I will never have my uterus removed proactively.
Good luck with your armpit ultrasound. I'm really hoping it's just hurting because of lymphedema cording. I get pain from that. I also have so much pain and tenderness down my sides from my double mastectomy 10 years ago and especially from the chest tumor I had removed 3 years ago. Nerves can be very unforgiving after surgery. Let us know how it turns out. Blessings and hugs, Zebra