Now that we have this new board, I would like to hear from people about how they deal with the fear of recurrence.

I was declared clinically disease-free back in early August. While this was great news, I find myself increasingly preoccupied with the fear of recurrence. Some of this is tied to the fact that some of the late treatment side effects are just starting to hit -- i.e. radiation fibrosis in the neck, some muscle spasms, etc. Since I don't know what I am supposed to feel like post-treatment, every new twinge or symptom brings up the recurrence spectre. (I was at my CCC yesterday, and all my symptoms are treatment related side effects)

How do others get past the recurrence fear?

Hi Jeff,
If you ever get that resolved please let me know.I am going thursday for my 5 month check up and i am a basket case now. I got things going through my mind that are not good and not smart.
paul

Hi Jeff,
There is a place on this board called coping/anger/fear, etc. that would be best to post this thread on. This one is for members that have been diagnosed with a recurrence. I just want to keep this on track, as I think it would help those of us struggling with this cancer again.
With that said, I went four years with clean results and never had a day that I didn't at least think about cancer coming back. The fear of it lessens over time but doesn't go away.
Minnie

Hmmm..
As Paulie said, if you ever figure this one out make sure you let us all know your secret!

I'm 9 months out and still wondering what's the result of treatment or whats could be the return of my little enemy!

I think i've resigned to the fact that you can't keep worrying about something you have no control over. & you can't keep focusing and being defined by the cancer.
I'm me... not "the girl that had cancer"
So there!

As has been said many times "you can be cancer free but you are never free from cancer". In some ways it's like a bad breakup - the further away you get from it the less you think about it. It was a long while until I could sleep well at night. I still have moments of panic when my dentist tells me I have leukoplakia or develop thrush out of the blue. Even post nasal drip can set it off (the fear). Sometimes I have to take mini breaks from the forum to get away from it (I still visit almost daily to see if there are any fires burning.

I give it far less headspace now...

As Gary states above so well, I don't think that anyone is ever totally free of the fear of recurrence, but it does lessen with time. Here's how I know it has with me - the first time I had to order new disposable contact lenses, which was right after I had recovered from my surgery, although I usually order a 12 month supply if I have had a recent eye exam, I could only bring myself to order 6 months worth... I just was afraid of what might be in a year, and couldn't plan that far ahead. However, when I needed to re-order, I took a leap of faith and ordered a years supply....

But, hardly a day goes by that I don't look in my mouth and at my tongue with my new friend, my trusty little flashlight... just can't help it...

I'm in the middle of treatment for a recurrence. My recurrence comes not much more than a year after my original. It was discovered through my 'one year' follow up PET scan, as a mets to lymph nodes. I haven't even gotten through treatment for this one yet and I'm already finding myself worried about recurrence (MORE recurrence).
There is an Ironman triathlon race next summer that I'm wanting to do (I've done them before) but I find myself wondering if I should put down the money for the entry fee and take the chance that I'll be healthy in June. I'll be done with treatment in about December....so I SHOULD be healthy again in June 2008, but that's assuming no more recurrence.

I'm sorry as I'm probably not helping ease your fears, but the recurrence chance is something we all face and I think sometimes it can be therapeutic to just talk about it. Hopefully you can keep it from dominating your life. I will say that while I think about it a lot, I don't let it overcome me. It's in my thoughts and concerns, but I don't let it debilitate me. I still have too much living to do!!!

Best of luck to you
-Steve

Steve
While I haven't suffered a recurrence (said with all fingers crossed) my battle taught me that I have to keep "living"...that means planning, and doing, things I want to do, and not hesitating or saying to myself "better wait and see".

It gives you a goal to shoot for; that's hugely important in everyone's life, regardless of what circumstances you find yourself in.

The biggest mistake I made during treatment was putting my life completely on hold. When I came through the darkest parts of recovery, I found that all of the things I'd wanted to do a year earlier had passed my by, and I had no plan for "now".

I'm still nowhere near 100%, but I set a goal to return to work, and I did. I am effectively disabled from the surgery to my leg, but I work full days, and travel...now I do it with a cane and a segway to get around.

My father is in end stage lung cancer, and we will likely lose him in the next month or so, and my father-in-law had surgery for aggressive kidney cancer this past week, and the prognosis isn't good. Even with that on our plates, we are planning a trip with our adult children and their spouses to China in November; I plan on having a family portrait taken on the Great Wall for Christmas cards.

That's not intended to sound callous about my familie's bad luck with the beast, and the sorrow it has brought to us; we will go to China because we (I, especially) need to follow through with our life plan. After all, I don't know what next month, or next year may bring, and I would hate to face another round with the beast knowing I'd put something else off in anticipation of more problems.

I say sign up for the Ironman, and use it as your goal for recovery. Think of it as a reward to yourself if you need to, but do it. The achievment you'll feel will be the sweetest victory you've ever enjoyed.

my two cents...your mileage may vary
Wayne

Wayne: You are such an inspiration...Your words remind me that 'putting our lives on hold' is exactly what we are doing. Today that stops! Thanks for the wake-up call!

Lois & Buzz in NC

I worry all the time too ,if it's going to come back or not.If i get any kind of bump sore or anything i'm calling my Doc and going to see him.I have been cancer free for 3and a half yrs.so far.I still have neck spasms all the time.I take ativan to stay sane,i just pray all the time that seems to help me alot and coming to this site helps me so very much,i'm so glad i found it.Hang in there.
friends
lynn