Log in to post a reply
May 31, 2020 01:10PM
You are right, maybe I have ~20 more years or more. I am NOT ready to leave this earth anytime soon, hope I didn't imply that.
I must say a big "Thank You" for saying that you wish I could sue them for not allowing me to have a BMX. The short story is I have been carrying around anger about that for over a year and a half and decided I need to just let it go. I guess I was trying to give in to the benefit of the doubt after having a negative breast MRI.
I went to a cancer hospital for my biopsy, by the time I saw the breast surgeon, all my tests and disks from my 2003 IDC through Dec 2018, had been sent to this facility. I assumed I could get a BMX and was not prepared to be denied one. The part that really upset me was that he never even asked why I wanted that. I wanted it for the same reasons you wanted yours and more. I was 65 at the time, my husband was nearing his 78th birthday. He was my caregiver and if I get cancer again, I will be on my own after surgery. I wanted to avoid that. Also, as we age we are usually not as healthy, so a surgery in the future would be even more risky. Should I get breast cancer in my right breast, radiation treatments are off the table. I will NEVER allow any radiation therapy to any part of my body, having believed the lies I was told in 2003. Sure, they told me how advanced radiation was, how safe, how most people only get "a little red" on their breast. NOT ME!!!! I was burned so badly with jelly bean size blisters on top and the entire skin underneath sloughed off! It came back to haunt me with my DIEP reconstruction in Jan 2019 when I had my mastectomy and reconstruction. It took a whole 7 months for the huge wounds on my breast to stop bleeding. I took pictures of the wounds every week or so because it was so frustrating and painful and I needed to see I was making some kind of progress. I received no support from either my breast surgeon or plastic surgeon. The only advice I got was "wash with soap and water and pat dry, and apply the bandages!" If not for my home care nurse who got the plastic surgeon to order Santyl cream, it would have taken even longer to heal.
I am actually at a good mental spot now, even writing all that, remembering how much I suffered, I just want it to be "over" and try to live again! I could have gone for a second opinion, they told me that, but I didn't and I do regret that, but I want to move forward. I am not having my other breast removed now, unless I get diagnosed again.
Now I am focused on the genetic testing which I am going for in July. I don't know if there are any new tests since 2010, but I am going to see a genetic counselor in July. I am doing that for my children. My mother, two sisters and a cousin on my mother's side all had breast cancer. My oldest sister had IDC and non-Hodgkins lymphoma at the same time and later developed MDS from all the radiation treatments for the other two. MDS killed her. Because only my cousin and I were premenopausal, there doesn't seem to be the interest in finding a hereditary connection, but I am going to hear what the counselor says anyway. I already had the BRCA tests in 2004 and BART in 2010. I am BRCA negative and I don't think there is anything new to test, but I guess I will find out.
6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+
12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)