Hello
I have Sjogren’s Syndrome which carries a relative contraindication for radiotherapy. Because of this, I am undecided about having the treatment.
I would be interested to hear from anyone in a similar situation.
Hello,
I’m afraid I can’t answer your question myself as it’s outside my experience, but hopefully by replying your post will go higher up the list and be spotted by someone who can help. Even so, with a little careful digging, I found this thread on the US site equivalnet to this one, whioch may be worth a quick look? http://community.breastcancer.org/forum/70/topic/752080
Hope you soon find helpful information to help your decision making.
Hello there,
I guess it depends if you have lymph node involvement or not ? I was a border line case for Radio and was offered the Supremo Trial where some patients get treatment and some dont. I struggled with this same question for many weeks and my oncologist and her registrar tried to be helpful but they would Not make the decision for me. I did much research and finally made my decision Not to have Radiotherapy. This was based on several things really, I had Scoliosis ( curvature of the spine ) as a child and had a Spinal Fusion at 14 so my ribs are in the wrong place, slightly pushed forward so I was scared of the radio cracking my ribs.Also I checked and once you have had radiotherapy you cannot have it again. My oncologist could not provide me with enough eveidence to prove to me that it would affect my survival rate, so in my case I chose not to have it.
Once I had made the decision I was happy with that and no one tried to change my mind, not my Mum who really thought I should do it as a " belt and braces " exercise, my mother in law who was afraid of everything and my Hubby who was a constant rock with his quiet support and love. It is very hard but when you have made your mind up , either way , stick with it and be confident that it was for the best.
Sending you love and hugs as you decide. Tracy xxx
Thank you revcat, I had a look at the website you suggested. Those ladies had more of a problem with chemo it seems. That is not an issue for me, but I am concerned about fibrosis and lymphoedema. My oncologist thinks I have an increased risk of both.
Still undecided I’m afraid but I have to make my mind up soon!