Karen Diagnosed at 34
I received my diagnosis the day before my 35th birthday. I was on the phone with my homeowner's insurance company, sorting out a plan for repairs from a recent hurricane that damaged my house, when I had to hang up to accept a call informing me that I had cancer. It seemed unreal and was unspeakably bad timing. I was diagnosed with stage II, ER+ HER- invasive ductal carcinoma, though we'd later find that my tumor was heterozygous and also tested as being triple negative breast cancer.
Due to my age, I went in for genetic testing and was shocked to find out that I also had a BRCA1 mutation, inherited from my dad who likely inherited it from his dad (so it was well hidden in my family tree, until it hit me). I'm the only living member of my family to have a confirmed BRCA1 mutation.
I had a double mastectomy three weeks after my diagnosis and started treatment six weeks after that. I had eight total rounds of chemo and 33 rounds of radiation. I plan to have my ovaries and fallopian tubes removed in the near future and am still considering reconstruction (it wasn't an option for me at the time of my mastectomy).
My mastectomy was a much more difficult surgery than I anticipated, but I struggled most with my baldness during chemo. I felt that my very private, personal struggle was on display for every stranger to see, and I didn't want to be so conspicuous when I was just trying to maintain normalcy for myself and my kids. Being bald and breast-less also stripped me of my sense of femininity during that chapter. And that was something to mourn as well.
I had two young kids during all this and hadn't lived in my state for very long, so this experience was a big test for me in asking for and accepting help. If I had to go back in time, I would have shared my news with my local friends and neighbors sooner because I really needed their practical support (namely, childcare!) early on in this process. I also hated going to the cancer center and constantly being the youngest person in the waiting room by a significant margin. I felt bitter and burdened by the unique challenges of being a young parent battling cancer.
I still struggle with the fear that I've passed this mutation on to my kids, but I'm trying not to worry about that until they're older and eligible for genetic testing.
Are you a survivor, spouse, friend, or caretaker with a story to tell? We'd love to hear from you.