long term medical problems

lilbit63

i am a 39 year survivor of Wilms tumor. i am now 44 years old and although very thankful to be alive, i am wondering if there are others like me who are suffering from medical finding no doctor seems to understand.
even oncologist aren't really concerned unless you have cancer now.
anyway, i've had to have a hysterectomy that landed up lasting 5 hours because my gynecologist said he has never seen a mess of adhesion and scar tissue and charred areas of tissue he assumes is from radiation now i have chronic back problems with portions of my spine chipping off which no one knows what to do about because there are not many like me out there to compare to.
there are other problem, but just wondering.....is there any one out there who understands!

Unknown

My dear lilbit...
I was so sorry to read of your on-going problems.
I too am a long time cancer survivor (since 1986).
I had 3 diagnosis in a span of 10 years and am cancer free at this time.
My long term problems are not nearly as severe as yours but I do still (and always will) have problems caused by much chemo and radiation.
It is very frustrating to know that the very things that save your life can also diminish your ability to enjoy that life.
Our chat rooms here are a great place to find understanding and emotional support for these types of things that are out of our control and tend to drive us nuts. If you have not yet joined us there I hope you will consider doing so.
God bless.

blueyz53

I had radiation for cervical cancer in 83. I'm in my early 50's but often feel a lot older than friends/co-workers my age. I have back pain all the time but it often gets intense. I can move or turn the wrong way or simply not have a specific reason for why I'm unable to move for a few days without severe pain, the kind where you gasp aloud if you breathe deep. I work full time and had my first grandson this past year so I continue to stay active. I do not have the best quality of life, but I have a great positive attitude. I was diagnosed with degenerative disc disease in my late 30's. I try natural solutions, I don't take pills or go to the doctor unless I need medical assistance. I tried that route a couple years ago. Did X-rays, scans and all the medical stuff; ended up with lots of bills but no relief. I do research and ask questions, I'm the best person to take care of me. My advice is to take charge of your health and try things that work for you. Good luck.

Tigger35

I too have long term effects. I feel older then my 45 years. Some days are better then others. I tell people my body is a train wreck. I have had breast cancer twice, and this past year was diagnosed with thyroid and bone cancer. I have been battling cancer for 10 years. I have terrible low back pain, we are using a low dose of Vicodin to help with the bone pain from the cancer and lower back pain. The bone is under control for now, but my lower back is a mess. I now have bone loss, degenerative arthritis, and spacing loss between some discs. Some days are good, almost no pain, other days I can barely move. My back overall acts up very easily. I have stopped lifting much over 10 lbs. to avoid possibly being laid up for a few days. I also take Neurontin which has added to my quality of life quite a bit. I miss the old me that could do anything, but at least I am still here. Take care and God bless.

37uterine04

Hi,I was 37 when I was diagnosed with uterine cancer. I am know 41 I am cancer free but I totally understand what you are going through. I don't have the exact symptoms but similar. Just remember that you are not alone. I can't completely understand but I can definately relate.

blueroses

I was diagnosed in 1989 with NHL and had regular cancer treatment and then it came back in 1991 at which time i opted for an autologus bone marrow transplant (stem cell). I developed long term effects and they are getting worse, the most difficult is chronic fatitue syndrome and heart damage from the chemo drug adriamycin. I had to have a pacemaker put in 3 years ago because of it and suffer from arrythmias that leave me dizzy and unable to function. I have other long term effects as well. I am not ungreatful to have been cured as I have had no recurrances but there is a heavy price to pay for transplants and other cancer treatments as well and doctors are just starting to admit this. Childhood survivors of childhood cancers have blazed the way for docs to see long term effects of treatments but now some survivors like you and I are now showing long term effects as well and we have a long way to go to being acknowledged.

groengirls

fellow wilms tumor survivor
hey there! i am a fellow wilms tumor survivor! diagnosed in 1973 at the age of three, now 39 and feeling fairly well. my back is a mess. not any major pain, which is surprising according to my chiropractor, but the more physically fit i have become (i lost 50 lbs. during divorce 6 years ago), the more "disfigured" i look. totally "caved in" right side. i sympathize with your plight in regards to doctors, but have been fortunate to find a great family physician who really takes the time and attention to have educated himself on what i had and what i need. i have been recently diagnosed with Attention Deficit Disorder as well, is that what "chemo brain" is?
my biggest frustration is that i really need some health care. as a cancer survivor, you know we are more susceptible to huge health problems. early detection is key! i am a single mom, full time student and not interested in government assistance. i wish that all of these "long term study groups" i am a participant in, would find a way to enable me to have a full physical each year!

tasha_111

groengirls said:

fellow wilms tumor survivor
hey there! i am a fellow wilms tumor survivor! diagnosed in 1973 at the age of three, now 39 and feeling fairly well. my back is a mess. not any major pain, which is surprising according to my chiropractor, but the more physically fit i have become (i lost 50 lbs. during divorce 6 years ago), the more "disfigured" i look. totally "caved in" right side. i sympathize with your plight in regards to doctors, but have been fortunate to find a great family physician who really takes the time and attention to have educated himself on what i had and what i need. i have been recently diagnosed with Attention Deficit Disorder as well, is that what "chemo brain" is?
my biggest frustration is that i really need some health care. as a cancer survivor, you know we are more susceptible to huge health problems. early detection is key! i am a single mom, full time student and not interested in government assistance. i wish that all of these "long term study groups" i am a participant in, would find a way to enable me to have a full physical each year!

HOW CAN YOU DO IT?
oH gOD i HAVE JUST BEEN THRU MY FIRST CANCER TREATMENT, i CANNOT IMAGINE GOING THROUGH ALL THAT AGAIN....................

terato

tasha_111 said:

HOW CAN YOU DO IT?
oH gOD i HAVE JUST BEEN THRU MY FIRST CANCER TREATMENT, i CANNOT IMAGINE GOING THROUGH ALL THAT AGAIN....................

That's what I said, once!
Until my oncologist said, "We're not interested in temporary remission, we're going for cure!" That was in 1981, when I was half way through my two-year protocol. I decided to "stay the course", enduring the constant nausea and vomiting for another year, but have been cancer-free for over 26 years!

Love and Courage!

Rick