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Long term young adult survivors

christinep22
Posts: 5
Joined: Jun 2010

I had a childhood cancer at 24. I am thirty now and have been in remission for 6 and a half years.

However, I still have some major medical issues and new ones come up all the time. I recently had to go back on disability and getting a full work up because they know I don't have a tumor, but they don't know what's wrong. This is on top of my maintanence meds.

I was just wondering if someone could let me know if this ends or maybe how to adjust, or I am just looking to talk to someone who might be able to help or even just talk.

Financially medical maintance is killing me, and everytime I am about to move up in my career I get some illness/sick. 1 step forward, 10 steps back.
I'd like to here from anyone.

Thanks
Christine

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

This is truly scary to think we can still be facing side-affects for 6 + years, as in your case. After having issues of my own, what I've found most oncologists just don't know about the side-affects -- mainly long term. We ask them and they look at us like a "deer in headlights". Not what we want is it? Or...as with my oncologist, instead of doing a different scan for my pelvic pain (which he claims isn't cancer) he tells me I need to go to my PCP. Well who's to say that doc will help or direct either. Feel at times like we're playing the run-around game...go to this doc and oh no, now go to this next one and on and one....

What type of cancer and treatments did you have years ago? I've had uterine and treatments were chemo and pelvic radiation. I'm starting my mission to find out what doc to go to after dealing with the on-off pain for 5 months. Enough is enough!

Wish I could tell you where to go or how long it will last. Who knows, especially when the docs don't know???

I can relate to medical maintenance is expensive as I've got a very large deductible and until that's met it's out of my pocket. That's one reason not going to all these docs until I can get that one scan to tell me this is what's going on.

Best to you and hang in there....we're all in this together... On the positive side, it's not cancer

christinep22
Posts: 5
Joined: Jun 2010

Thanks for responding. I had bone cancer in my Tibia and it was treated with Chemo and surgery.

I am suffering from horrible fatigue, just got put out of work. I'm sleeping 16 hours a night and am just beat. My PCP sent me to my oncologist my oncologist sent me to a neurologist at the same hospital. I got an EEG and it was fine. So the I got the we need more tests, but also got it is not cancer.

I have a different experience with doctors mine are communicating and working to figure it out but in the meantime I'm at their beck and call. It's so frustrating. You get through one thing and then there is another mysterious thing that pops up and you start all over.

I wish none of us had to go through it but it is a comfort to know were not alone.
I don't know were you are but I have a number for a doctor who specializes in long term survivors of cancer and he is supposed to be good. I made an appt. He works out of Sloan Kettering in New York. That's were I was treated.

I hope everything works out for you and if you want the number let me know. Even if you just want to talk or vent. Whatever!

Thank you again for reminding me we can all get through all of it together!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I wish I could make it all go away and not return....back to your normal self! We all hope for that don't we, just as many docs mention when we speak about the after affects from treatments -- be glad you're alive!!! Not entirely what we like to hear, especially when we have pain and can't work, as in your case. Wow that's a bummer when you're tired 16+ hours per day....can't imagine!

I live in St Louis so NY doc would help. What's his title as possibly research for one of his kind here. I know when I scanned this site for help with long-term affects someone mentioned a certain type of clinic or doctor who can help us. Will have to look again and let you know, if you have interest.

How often do you have tests to check for cancer? I'm barely 1 year out and go in every 6 months for cat-scan and every 3 for blood work and physical exam. I was one to convince my doc to not do cat-scan everytime due to all the increased radiation...he agreed. My tumor marker is CA 125 which is a good one to follow so if I have month when don't have scan and CA 125 has gone up, then we'll do the scan. Scary hum? Next week I have my next scan and then following week my appt with doc... I'm doing better as don't get so jolted, but as I get the day before my doc appt I'm usually a bit more nervous, which is expected. I do enjoy life and laugh.

You take care and hang in there...plse keep me posted on how it's going with you and also about the new doc at Sloan Kettering.

Best to you,
Jan

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