I never really worried about a Cushing's recurrence until I started the message boards and saw how many members had recurrences or surgery was unsuccessful the first time. I had my Cushing's so long ago (surgery was 1987) and I was told then that the chances of having my tumor come back were so slim. I knew then that if I did have a recurrence, they could do another surgery, then it would be gamma knife or radiation - my memory fails me.
I decided early on that I would never have gamma knife or stereotactic radiation. I would have a BLA instead. A bilateral adrenalectomy sounded MUCH more pleasant and I'd know the results right away rather than suffering for another year to see if the radiation worked.
Luckily, I've never had to make this kind of decision although I know lots of Cushies have.
The kidney cancer is a whole other ballpark, though. I worry about recurrences, metastasizes and other stuff nearly all the time. On the anniversary o f my diagnosis, of my surgery, when there are scans, when I just see my nephrologist, when I have any kind of pain in my abdomen. That adds up to several times a year.
I just got my latest issue of Coping Magazine (it's free for patients! Sign up at www.copingmag.com ) and the first article was Coping with the Fear of Recurrence.
I loved this quote: "Living through cancer treatment can be the horror, but for some, living with the fear of recurrence is even worse."
This is so true, especially for me and my cancer. With Cushing's, I had 5 years to try to get diagnosed and think of the implications. With cancer, I went to the ER in horrendous pain and knew within a couple hours that I had cancer. No going from doctor to doctor, no scheduling test after test, no worrying what it could be.
So, I do most of my worrying now. I was very brave between the diagnosis and surgery. I wanted this thing out. Now.
But lab reports tell me it was already hemorrhaging around the edges and I have lung nodules. Will these come back to haunt me. How soon? Am I free of cancer or is it just biding it's time, ready to reveal itself at some time when I'm least expecting it?
I know I'm lucky. I've survived two things I wasn't "supposed to have". What does the future bring?