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21 yr survivor need info

lynneely's picture
Posts: 1
Joined: Oct 2004

In 1992  I had surgery for uterine cancer having a complete hysterectomy and removal of a  large tumor  4-5 weeks after surgery , I started radiation to the pelvic for 6 weeks then.  I  was treated with 500 hours of cisplatin and 5-fluorouracil chemotherapy with a pump around my waist at 100 hrs one week with one week off and then back on. (this was a trial  study that I had to sign for before getting the chemo)

After surgery  I told my Dr. that I had no feeling in my bladder, his response was It will take time for the nerves to regrow and should come back in several weeks to a couple a months, that was 21 yrs ago.  (they did try inserting stimulator  like a tens unit in my back  didn't do a thing.)  

Also, I was have tingling in both my legs from the knee down, the bottom of my feet I could not feel, he also said that would go away after time,  well sort of I still have it if I think about it now, but not as bad as it was 21 yrs ago.

During this time I had Bad bladder spasm's that started a yr later or so  which no one could diagnose I always thought I was trying to pass a kidney or bladder stone.  The pain was so intense I was double over for days. To make a long story shorter, they spasm's over the corse of the next 15 years only got worse from twice a yr. lasting 2-3 days to  happing 2-3 times a month lasting 4-7 days.  These only started at night after laying down.

I started sleeping in the recliner just titled enough so I could sleep and the alarm set for every 2 hrs to get up and pee.  

The last straw was when the spasm stop one day and then started again the next I could not take it no more and went to the ER and they catheters me, I have been catheterize since. And not one spasm.  Now I deal with a lot of UTI but I can function.

Also after all treatment's I have conic constipation, and all my dr would tell me was to eat more fiber.  I went through so many things trying to change this I gave up and just deal with it. 

I have lived this way for 21 yrs. Yes Im still alive and have dealt with the problems moistly on my own.  

But now I have more problems,  yrs ago my left leg was week and and is getting weaker, I have to pick it up and put it in the car (if Im the passenger)  I stumble a lot,  I'm not steady on my feet and its really getting to me. 

Yes Im 62 but have been very active all my life couldn't sit still had to be doing something, (last yr at this time I was siding my porch, couldn't do it this yr if I wanted to, my memory is getting bad, name's just don't come to me, words in a sentence sometimes go blanks. 

I guess Im looking for someone that has had these problems and how they deal with it or any medication that have made it easier to live with. I walk with a cane now if Im going any distance. 

Maybe I just want to vent because I believe I getting old. But I feel like Im only 62 and this should not be like this. Boy this last sentence has got to me.  Now I about to cry.

If anyone has had the bladder, memory problems, stumbling, walking, unstable and has been diagnosed with something that will give me hope,   this last year I have seen such a big difference in my day to day life it is scaring me bad.  I feel like Im going down hill fast. now I am crying.  thank you for reading.


Posts: 1190
Joined: Dec 2010

I can relate in some aspects but not all.

I think if  your oncologist keeps dismissing your problems, you need a new one! Personally, I think he is not doing you any good now. He obviously isn't listen to you, paying attention, or helping you.

Have you discussed these symptoms with your regular doctor? Maybe they are related to your cancer treatments, but perhaps they are symptoms of something else entirely. I think it would finding someone who will investigate what is going on.

If I were you (and I do this a lot with my doctors/surgeons) I would write down every symptom and underline the symptom, then below, do a brief explanation of what is going on. Perhaps if you do it that way, the doc's can see it better.

If your primary doctor isn't very helpful, maybe you should try a fresh pair of eyes and see a different Medical Internist.

After I had my bilateral mastectomy with sentinel nodes and one axillary node removed, I was having so many many pain issues. It wasn't until I saw a different medical internist who gave me a referral to a pain clinic. That was 2011. I am still seeing the pain clinic and getting pain treatments that are helping me. It took a fresh pair of eyes to come up with this plan.

I do hope you keep searching and find a reason and treatment for your problems. I wish you the best.

NoTimeForCancer's picture
Posts: 2913
Joined: Mar 2013

The treatment received back in 1992 would be very different from what is done today and may have very different effects on you from what people have today.  It sounds like it is time to find someone who will LISTEN to you and see what they can do to HELP you.  Good luck!

They didn't think chemo-brain was real at one time and how many years later they are now saying it is true? 

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