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long term effects of radiation

nowwhat41
Posts: 2
Joined: Nov 2013

Hi.  Im new here. I'm 41 years old.  I had global radiation for Hodgkins in 1989 when I was just 16.  Then in 2009 had a double mastectomy for breast cancer.  I am having more and more effects from the radiation and my docs don't seem to have a firm understanding of the long term effects of radiation.  It started with the severe constipation that's been going on for many years, and I had surgery for a bowel obstruction last year.  I'm on 4 prescriptions just to keep my bowels moving, though they're still sluggish.  Now I'm having changes in my bones and I'm scheduled for an echo and stress test for my heart next week.  I have been an ICU nurse for 15 years and am very in tune with my body.  I also eat well, exercise, don't drink or smoke, yet feel as if my body is falling apart. Before seeing some posts here, I thought I was going nuts; that  no one else understood the frustration.  I welcome any insight or suggestions.  It feels lonely, since even the medical field seems limited in it's understanding.

 

faulkfam5
Posts: 2
Joined: Feb 2012

Hi nowwhat41.  I'm pretty new to the site too, but not new to the long term effects of radiation.  My name could be nowwhat48 :)  Full mantel radiation in '79 has left me asking a lot of the same questions as you are.  Especially the one about "am I just nuts"?  No, your not.  It is lonely though because I seem to be educating my doctor about my pains more than he has educated me for sure.  We seem to be pioneers regarding the long term effects of radiation.  I know now days the treatment is much different for Hodgkins than it is was back then.  So perhaps we were guinee pigs of sort.  But what about 20 years before that, where would we be?  Still, that doesn't make my body feel better today, I know.  I experience a lot of pain in my neck and shoulders form the mucscle atrohpy and arthritis it has left me, that is my biggest complaint.  It also brings on depression.  I am on neurontin and Mobic to help sheild the pain.  It helps, but it's far from a normal body.  I also do a lot of Yoga.  That has probably been my biggest help believe it or not in many ways.  Do what ever you can to help your body feel better.  I have determined that wherever you are with your body and your pain, that the better you feel, the better you feel.  Sounds silly I know, but honestly you have to build on the good not the bad.  We can't control the past, only the future.  

I wish you well.  (try yogo

Dave

viola43
Posts: 16
Joined: Aug 2011

i was treated about 20 years ago for early stage Hodgkins with just radiation and started feeling pains and weakness in my neck and shoulders 15 years later. This turned out to be neck arthritis, nerve damage and radiation fibrosis resuling in muscle weakess and some atrophy. Though I was treated at a top notch cancer center, they could not explain these symptoms which developed years after treatment.  Through this forum I learned about special long effect clinics which diagnosed me with the problems above and offered many ideas about diminishing pain and increasing function.  I returned for a yearly check-up and now plan to go annually. These specialists understand how treatment effects organs and structures and are able to offer explanations for puzzling symptoms which then diminish many worries.  I highly recommend this avenue.  I went to Sloan Kettering in NYC but there are many centers throughout the country.  This was one of the best things I ever did and I am forever grateful to the person on this discussion board who recommended the clinic to me.  Good luck!i

 

linevans
Posts: 1
Joined: Feb 2013

I've been looking for someone with my experience.  I had "total nodal irradiation" in 1983 for Hodgkins also.  At that time, side effects long term were not known; now they are and so that is not the treatment now.  I am fortunate to have a doc at Emory University who diagnosed my heart and lung and renal artery DAMAGE from the radiation.  Unfortunately, he says we patients are very hard to treat.  My problems started with massive build up of pleural fluid.  I was  having to go have 1400cc drained every few weeks.  Heart doc felt it was the lungs; lung doc said it was congestive heart failure so I was guided to a procedure which almost cost me my life.  I had a pleurectomy with talc pleuredesis to glue the left lung to the chest wall and a second chest tube pleuredesis which put me in respiratory failure within hours of arriving home.  911 & back in hospital for two more weeks but, miraculously, I survived, though was on oxygen for a year and unable to do anything.  I am better but a mere wisp of my former self!  Now the fluid builds on the right lung, the left one is severely stricted and scarred, and I get into breathing problems really quick now.  Also, can't take ACE inhibitors for my heart because both renal arteries are stented and something negative with that.  I used to be so vibrant and energetic but the best I can do is try to stay out of the hospital and enjoy my home, sedentery life.  I do love wine, food, reading, good TV, my music and having friends over so my life has a new norm but not all bad.  I do wish I could walk like I used to but the heart rate needs to go up, mine can't relax enough, blood backs up in the lungs, and I can't breathe.  Perhaps we can be support for each other.  I am 68 now; was 37 at diagnosis.

 

Victoria.e.moore
Posts: 2
Joined: Nov 2013

Hi...I'm new too and  I am 39 years old, I also had radiation therapy when I was 16, for Hodgkins Lymphoma 2B in 1991, along with Chemotherapy.  I have horrible bowel problems as well.  I don't remember every being "regular" since treatment.  I haven't had any reoccurence of cancer as of yet, but I worry daily that the monster will return.  I recently changed Gynecologists and during my visit discovered that he had also had Hodgkins in the 90's, and gave me a little insight to long term effects, which like you, helped me realize that I am not a nut either.  But like us, he didn't have a lot of answers other than what he could gather from other survivors.  I have tons of aches and pains, which I can't explain, as well as an overwhelming fear that I'm not going to see the "monster" coming.  I am a 13 year CMA and EMT, and can't seen to find a primary care doctor that knows anything about the long term effects of radiation.  Any time I ask a question, I just get that deer in the headlight look from them and their only suggestion is to run another type of test that still won't give us any definitive answers.   I've been cut loose from my oncologist for years, and follow up annually with my primary care, but I seen to be in the lead when it comes to knowledge about Hodgkins,Chemo,and radiation.  It is very frustrating, and quite scarry.  I am scheduled for a hysterectomy in December, due to some polyps and cysts that are causing issues, but when I had my pre-op clearance tests done, they discovered my EKG was abnormal, which got me quickly referred to cardiology since NOBODY knows if its because of radiation.  I got an echo at the cardiologist which revealed Mitral valve regurgitation, but thank God, not severe, and no enlargements or loss of function.  But I still want to know why I have it..  I feel like I am 79 instead of 39, and I consider myself pretty tough, but its starting to wear me down.  I feel like a hypochondriac, since I seem to always have some kind of strange pain, ache,or malfunction.  I am so glad I'm not alone, but wish no one else in the world had to deal with this either.

slessurb
Posts: 5
Joined: Sep 2009

i posted this on another discussion.

HD 1981 (age 19), radiation and spelenctomy

- heart damage (need valve replacement eventually).  calcification of arteries

- schwanoma (2013), in back/spine (radiated area).  clearly connected.  tumor removed surgically

- renal carcinoma (2009), not sure if related.  tumor removed surgically

- thyroid nodules, very large but non-cancerous so far.  taking synthroid for years now

- consistently elevated WBC (17-20) for years and years.  no explanation.

worried most about cardiac issues and risk of secondary cancers (lung/blood)

feeling lots of pains (internal, left arm).  fatigue.  currently overweight so that may be the major contriburtor.

hoping things dont accelerate.

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