Well, I have a heck of a story! My name is Toby Gopen, I am 66 now. I was adopted when I was 2 days old. Always wanted siblings, always wondered if anyone out there looked like me. Then I had my children, two wonderful sons! All my life I have had very interesting medical issues. Corneal abrasions every month prior to my cycle, Gout symptoms at 10 years old. When I had something, I was looking forward to, my adrenaline would cause me to get so physically ill, I couldn’t enjoy anything. I was told it was anxiety of course. Fast forward to 16 years ago, I was rushed to the hospital for an emergency resection, and they found Neuroendocrine cancer on my appendix! It’s removed. Two months later I had a right Hemi colectomy. No chemo or radiation. I started looking for my biological family 40 years ago with no luck! The Florida birth records are sealed forever!
Until 23 & Me! This year I found both sides of my biological family!! I now have 5 beautiful sisters! I also found out I have BRCA2. My bio dad had it and lived to be 87 and never had cancer. My bio mother died at 63 of cancer. She was never tested but I assume she was brca positive. I have had genetic testing to confirm my BRCA2. Shortly after that I was sent for a Breast MRI that revealed an Introductal Papilloma. Biopsy was negative. On March 15 I had my Ovaries and Tubes removed. The biopsy revealed microscopic Neuroendocrine cancer. Wow, 16 years later! I had to wait till May for a PET scan specifically for Neuroendocrine cancer. I have been diagnosed with multiple endocrine neoplasia (that actually explains everything I had to deal with when I was younger! It wasn’t anxiety) Metastatic Neuroendocrine cancer is in remission now, according to the scan. I have my son’s wedding next Sunday. My double mastectomy with AFC is June 20th. I have decided on no reconstruction because I have had way too many surgeries already. I’m trying to lower my risks as well. I also have 10 inches of surgical mesh in my gut from multiple surgeries that needed a hernia repair.
I teach communication skills to medical students, and I have decided to do a program on my journey. Help them to understand and be empathetic when they have a patient that must make difficult medical decisions or look for something other than horses when they hear hoofbeats! I have decided to make this a positive experience. It’s a no brainer for me really. I have a beautiful family that I cherish, and I want to be around to spoil all of them. Make memories with my grandchildren. I can’t wait till this is behind me. I am 38DDD! I imagine it will be at least an instant 10-pound weight loss! The best time of day is taking off that bra right? I will always keep my sense of humor too! Sometimes it’s the best medicine.
Thank you for letting me share part of my journey with you! Yes, part! I am 66 after all!!! That would be WAY too much to text!!
With love and Hope,