Dealing With Being A "Survivor"

Does anyone else have issues dealing with all the after effects of being a survivor? Sometimes I really wonder if I wouldn't have been better off not living through it. The long term effects, not just of the disease itself but from all the chemo and radiation... I think cancer was the easy part. My overall diagnosis was Cushing's Disease which covers a lot of territory. My specified diagnosis was adrenal carcinoma (malignant tumors on my adrenal glands). It's been almost 18 years since my surgery and I just feel broken, like nothing works right anymore. I've been told some of the issues are "late effects", when you live too long post-treatment. Gee, that's bloody awesome. Does anyone else have these "late effects"? How do you deal with it?
Gwen1982 Gwen1982
46-50, F
5 Responses Feb 2, 2013

I have been extremely lucky. I have had many skin cancers surgericly removed and the only problem has been a skin graft on my ear that didn't take. I had lung cancer surgery which did not require chemo or radiation follow up.

Yup. I felt perfectly fine until they decided to "cure" me. Now I haven't felt well a day since. I feel like I am just waiting to die. I am in remission, but I feel like crap. My body was thrown into so much of a change that I have not been able to recover. I repeatedly go back to the doctor for help, but nothing has helped, so I've pretty much given up. Joint pain, hormone changes, physical changes, mental changes, living in terror for so long....everything has changed me forever.

Hi Gwen,
I've just recently joined this chat site, purely for some support and understanding from people like me - I was diagnosed with cancer last week.
However, your story truly peaked my interest as my son, David has Cushing's Disease. He had a Bilateral Adrenalectomy at age 11 (so he has Nelson's Disease as well) and is now 24 and in good health and spirits. His brilliant attitude and positive outlook has made an enormous impact on us as a family. I think it would be wonderderful for you to talk to someone who has been through as much as you and can understand? The 'late effects' can be dealt with and is by no means something you as a survivor should just accept. Please let me know. Wishing you a good week, LadybirdBee

Hardworkin, I'm originally from Pittsburgh and my brother was treated for cancer at the hospitals there. He had brain cancer. Sadly, he did not survive. I appreciate the level of care provided there. I can't fault my own care as I was treated in New York City. The survivor's guilt definitely takes its toll. (My brother was the good kid growing up. I was the "Well it seemed like a good idea at the time!" type.) I understand about the dental issues as well. I think that's a result of some of the meds I was on as opposed to the radiation. If it's not too weird to say, it's kind of nice to know that I'm not the only one with these issues. I feel a bit less alienated.

Sorry you're having such trouble. I also have late affects of the all the radiation I had to my mouth (had stage iv head and neck cancer), mostly dental issues. but it beats the alternatives. I'm glad I live in the Pittsburgh area where alot of cancer research takes place. I had surgery that thank God was not disfiguring like they still do in other parts of the country (called radical neck - they remove the tongue & part of the jawbone), two kinds of chemo and daily radiation for two months. I have little to no saliva now, which exacerbates the dental issues, but I've learned to live with it. I have more of a problem dealing with the survivor "guilt" of making it while others have not.