CSN Login
Members Online: 10

20 Plus years after radiation

Alan61's picture
Alan61
Posts: 3
Joined: Jun 2005

In 1978 I was told I had Stage 1A Hodgkin's. I was told I would have to go thru radiation treatments using Colbalt 60. I was given over 7432 rads of radiation and now some 27 years later I'm still having side effects. I was wondering if they are any other "LONG TERM" Survivors of radiation?

genenie
Posts: 3
Joined: Mar 2004

Yup. I also had radiation (and chemo) as a toddler over 25 years ago to treat a neuroblastoma. I continue to face the side-effects. Its like the gift that keeps on giving:) I am thankfully healthy, with no recurrance of the cancer. However, I too am interested to know if there are others out there who have found ways to address the long-lasting effects. My doctors haven't been able to be that helpful.

sassy62
Posts: 8
Joined: May 2011

Ha ! I call my radiation the "Gift that takes on taking." Mine timor was an astocutoma near the cerebellum. Radiation afterwards took the hair on the back of my head. 20 years after that I started losing my hearing. And now, IT'S BACK. A different kind of tumor and benign, but related to radiatio (?). That'swhat the docs are telling me.

lindazame
Posts: 46
Joined: Jan 2002

Hi Alan,
Actually there are a lot of us long term survivors out here. I was treated for HD IIIE in 1971-72 and I'm still around to tell the story. I have some members of my long term suvivors group who were treated with high dose radiation as toddlers in the 1950's. Surviving this long does take some special help especially from physicians who know about late effects. If you'd like to meet and talke with other long term survivors visit www.acor.org click on mailing lists and then the LTsurvivors group to meet over 400 survivors.
Linda Zame

dickl
Posts: 39
Joined: Jan 2002

my 17 year old son had a bone marrow transplant at age 8. No radiation but massive chemo that left a host of neurological issues. Unfotunately your other reply guy is right, docs are basically no help. There are long term survivors programs at most major cancer centers. We've found them to not be much but an in title.Long term survivor care is the latest talk from the cancer medical professionals.There is an excellent book written by Wende Hobbe at the survivors clinic at the Philadelphia Children's Hospital. I suggest all cancer patients and survivors read it. Life is different after diagnosis and you never can go back to before.

web page name,
dickl

mc2001
Posts: 344
Joined: May 2003

Hi gang!
I can certainly say I have long term side effects. I was diagnosed 10 years ago with acute lymphoblastic leukemia. Had chemo, rads, surgery, etc. At first I thought it was all in my head... maybe even becoming a hypochondriac. However, my energy is still very low, short term memory is poor. I would like to know what some of you are experiencing late term. Take care. God bless.
-Michael

blueyz53
Posts: 7
Joined: Oct 2003

I had 25 radiation treatments following 2 surgeries for cervical cancer in '84. I have experienced back/leg/feet problems for the past few years. Tests show arthritis, degenerative disc disease. I'm wondering how much of this is related to the radiation. I've tried getting info on the long term effects of radiation, not much out there. I check this site once a year or so, was glad to see your message. I think my problems are related directly to the radiation. I'm grateful I survived these past 20 years, but would like to have a doctor verify the connection, none have so far.

2manyrads
Posts: 16
Joined: May 2010

As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and children were given radiation treatments that would later result in many developing both cancer and radiation-induced heart disease. My mother—as no doubt many other mothers—held me on her lap, to make it easier for the radiologist to administer the x-rays. The cancer she developed from her own exposure to the radiation that passed through my 5 month old body to hers, was one of the causes of her death many years later. After surviving leukemia at age four, I spent the next thirty years in and out of hospitals for illnesses that seemed to have no identifiable cause. When my mother was diagnosed with a cancer the oncologist told her could only have come from exposure to large doses of radiation, she explained she had never been in that situation even as an emergency room nurse at Bellevue Hospital in Manhattan. After further questioning from the doctor she remembered our experience with x-ray treatments. The doctor said he’d studied in med school that erroneous diagnosis and x-ray treatment. He said, I assume your son died a long time ago since he received the bulk of the ionizing radiation. No, she told him. My son has had a lifetime of serious illnesses, including being placed at one time under hospice care for over four years. The doctor told her to call me and for me to get to an endocrinologist immediately because I most certainly had thyroid cancer. I did as told and the endocrinologist said he could see from across the room that I had an abnormal thyroid. It turned out to be Stage 3 metastasized thyroid cancer. After a thyroidectomy and radiation treatments (ironically to treat what had caused the disease in the first place) I slowly recovered. I take synthroid that is carefully monitored for correct dosage and the devastating symptoms caused by my thyroid cancer have been controlled. 

sassy62
Posts: 8
Joined: May 2011

Wow. And I thought I had the record for the number of years since having radiation treatments. This web-site is a real eye-opener for me. I had my radiation in 1961-62 at the age of 11 - 12 years. It was cobalt. It was post-operative treatment for an astrocytoma near the cerebellum I'm now 61 years old and ab out to have CyberKnife radiation treatments for a menenginome.

dallen1
Posts: 9
Joined: Mar 2011

Although not quite a child at the age of 19.I was playing center field when
the deep fly ball struck my face just below the left eye. With concerns of broken facial bones x-rays were taken which revealed a lemon size brain tumor. The tumor was removed and finding the tumor shown malignant tendencies I was given what was said to be 6 weeks of high voltage radiation. Now at the age of 51 I have had 4 brain tumors and 3 different cancers, the Squamous cell in my middle ear has resulted in 3 operations all replacing ear drum and cannal along with bone. This is all believed to be the effect of radiation from over 30 years ago

15plusmore
Posts: 2
Joined: Apr 2013

1998, full body radiation and bone Marrow transplant at 10 months of age. (rare and unknown cancer which ate all the bone marrow- 7 draws only produced 6 cells).  2013 is 15th yr. of cancer survivor.  Fairly heathy, but significant oral, dental issues.......lack of adult teeth present, spacers in use, root cannals, fillings, crowns needed.  16 yrs old.  They are seeing patches on thyroid and monitoring it, have undeveloped cateracts, growth is stunted and plataued at 5ft. School very difficult-memory issues and frustration.Thank you for beginning to write a book, as there is little information on bmt's or radiation of babies and the long term effects.

aussiewife
Posts: 1
Joined: Jan 2007

hi alan61
I suffer from the long term effects of radiation too. I had cancer of the larynx in 1995, was over radiated and 8 months later ended up with a trach. Since then I managed well until 2005 when I began having trouble with my voice and swallowing.
Now I have to have a dilitation surgery every 4-5 months to open my esophagus so i can get food downn and the power of my voice has diminished. My doc calls it the 10 year radiation effect. It makes life very difficult although I manage to live a full life anyway. Thanks

birdgray
Posts: 8
Joined: Sep 2009

http://www.leiomyosarcoma.info/raddiscuss.htm

I dont know how I found this web site but it has everything about the late effects

browndog1
Posts: 2
Joined: Oct 2008

Had radiation for all in 1979. Feel pretty good except getting fat and lazy. Curious about what effects people have.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Browndog,

I don't want to go into details, mainly because it wouldn't be fair to you or anyone without having been looked at officially. What I can tell you, is that since your treatment days, doctors have now found how important follow-ups are, and newer preventative protocols to follow.

There are two resources that I would like to give you. The first is a book by Nancy Keene, Childhood Cancer Survivors: A Practical Guide to Your Future (Childhood Cancer Guides). Yes, while it mentions childhood, I can tell you that it also applies to adults. Inside it mentions so many cancers and treatments, and what doctors now know to look for.

The other, is a web site http://www.childrensoncologygroup.org/. There are so many resources through this site, including where to find doctors that specialize in following up late effects from cancer treatments. Wait, here is one more, the Cancer Survivor's Project at http://www.cancersurvivorsproject.org/index.html.

I was rudely introduced last year to late effects, honestly after 19 good "healthy" (somewhat overweight and lazy). But then again, there had been no follow ups for me either in over a decade to catch anything earlier.

My case is not unusual in the survivor world, just to the average doctors.

Paul E (Hodgkoid2003)

RA
Posts: 1
Joined: Dec 2009

Hi, I'm 25 years post radiation for Hodgkins disease stage 11. I have been having some problems with upper abdominal pain and am concerned about a secondary cancer. I will have a follow up apt. next week and will post again. Hope you still checking the site.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Hopefully, some of these folks will respond, RA, but this particular board is not so active, in my personal experience.

I am sorry to hear of your long existing pain, and am also sorry if you felt that the chatroom was not to your liking earlier this evening.

With respect to the chatroom (and I do not visit as much as I used to) my own history with it includes being turned off by it when I first entered. I wanted them to be talking about cancer rather than food and whatever else they had going on. It took me awhile to realize that there is more to life than cancer, and that, in fact, talking to other survivors (and caregivers) about anything BUT cancer was actually therapeutic.

Regarding your radiation and subsequent issues, it is fairly clear to me that the therapy (either chemo or rad) improves virtually daily and I cannot imagine what it must have been like 25 years ago: I am even now writing a blog entry that describes how, four years out of my head/neck cancer treatments, I feel basically out-dated in some respects.

That is a good thing, that so much is changing, improving, and so dramatically. Not so good for you, perhaps, timing-wise, but a good thing nonetheless.

I am hopeful that your appointment proves to have nothing to do with cancer, RA. My thoughts are with you.

Take care,

Joe

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

RA,

First off, congrats on making 25 years!

I still lurk around here, so please let us know how you make out with your appointment.

Paul E. (Hodgkoid2003)

macswife
Posts: 4
Joined: Oct 2006

My husband's first cancer was 23 years ago--laryngeal. He lost half his voice box, his entire epiglottis and had throat reconstructed with chest muscles. He did pretty well until six years ago, despite three additional primary cancer diagnoses. Then the late effects started to bother him. While choking (no epiglottis) has always been a bit of an issue, it has become much worse. The doctors have called it late effects and say that the radiation is causing further changes to the tissue and it is not working as it should. He has great difficulty eating as much food goes down his windpipe. They want to give him a feeding tube but he says he would rather choke to death.

He was also over-radiated several years ago for an aggressive prostate cancer. That caused bone breakage in his sacrum which required zometa. Pain is reduced considerably, but the scar tissue caused by a carcinoid tumor of the ileum surgery and the radiation has resulted in several abdominal surgeries which of course then cause more scar tissue. We are aware that currently increasing pain is caused by a bowel which is beginning to twist with more surgery in the future. His lungs have been so damaged that he is unlikely to survive another surgery. But of course they thought so the last time, also. He is a survivor.

The only good news on our horizon is that we discovered that early work he did for the Department of Energy allowed him to enroll in a program which has provided some benefits for him. If you know anyone who worked around nuclear stuff in the 50's and 60's, have them contact the Department of Labor or Department of Energy--if they've survived this long. It's not widely advertised, but with four primaries, the oncologist commented one time that he had to have been exposed to something. I never even knew about this early work, but some research turned up the program I'm referring to.

Good luck to all of you.

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I am a 22 year survivor of non hodgkins lymphoma and have many late effects from treatments but it has only been in the last 8 years I would say that I have had doctors actually validate that. I do believe that they probably didn't know what might lie ahead in late effects of some of the chemo drugs and radiation and they probably didnt realize how long we would in fact survivr as treatments became more effective.

I had a bone marrow transplant on recurrance and on diagnosis had CHOP and localized radiation. During transplant I had total body rads too.

Now I must say here that you have to remember that everyone is different in how they hanle treatments as they are all different people so let me say that first off. Not all experience the same as other survivors but there are lots who do, lots of similarities at times.

My late effects include: heart damage due to adriamycin (chemo drug) - now have a pacemaker that had to be implanted on an emergency basis due to extreme arythmia from the damage, osteo arthritis (from the rads they feel), fibromyalgia (also no doubt related), chemo brain (cognitive issues and memory issues) - they now know that some chemo drugs do cross the blood/brain barrier where before they didn't feel they did. Then there is radiatioin damage to the brain that they feel may well cause the cognitive problems down the road (they don't call it 'damage to the brain' they say 'weakens the brain' rather - the rads that is. I also have periferal neuropathy from treatments they feel and am being tested further for more of that. I have elements of PTSD from trauma scenes during treatment, anxiety attacks (they seem to be getting worse), and of course the ever popular fatigue that keeps me down daily. I have dry eye syndrome that is constant and embarassing - tears falling out of my eyes most days and nothing other than more surgery for correction. I am on 12 different meds that will continue from here on in. 3 of those are vitamins that I have to take for linked issues.

I am divorced from my husband and cancer was a big issue in the decision indeed, many unfortunately find that this happens to them as well. For the lucky ones this journey with cancer makes their relationships stronger - they are the lucky ones to be sure.

I still see doctors and have tests on a continous basis for all of the above and many times I feel incredibly overwhelmed for all of these ongoing issues. Many of my continued testing is very invasive and I have become a total wuss, maxed out from all the interventions I have had through cancer. My calendar is a mess with appointments, even yet, and re scheduling often as health issues get in the way and I am unable to get out.

The fun indeed never ends. lol

On the flip side I was able to be there to raise my two children who were very small when I was diagnosed, one just got engaged yesterday and is finishing University and my son is now in the field of work he studied so hard to become a part of.

Yup, there is a high price to pay for the cure for many of us, and yes there are many long term survivors out there - many have the same validating stories - we are not crazy, these long term effects exist and the specialists are now acknowledging that fact.
Sites such s this are very important in order to bring us all together.

Blessings, Bluerose

leolove
Posts: 3
Joined: Feb 2010

I had Medullary Thyroid Cancer 27 years ago at the age of 23. This is a very rare cancer. I had 3 operations and 6 weeks of broad spectrum radiation since I had lympth node involvement.I received my treatment at MD Anderson and they had only 40 cases when I became a patient. They just didn't know a lot about it then. I developed leukepenia (low white blood count especially my C4s or T cells) a few days after beginning treatment and still have it today. I was a teacher but was forced to retire several years ago due to chronic illness. I have sinus problems (lots of infections and dryness), problems with vocal cords, GERD, heat sensitivity, problems swallowing, numbness in my neck, pain and weakness in my upper body, dental problems and memory problems.I now suffer from severe migraines and must take depakote to function.My neck is extremely thin and scarred due to bilateral neck dissection. Sorry to run on this way but I just found this site and I'm so happy to finally have people who understand. It's hard for people to grasp the fact that the side effects go on forever. It's not that I'm not thankful to be cured. I thank God every day.I wouldn't be here today without the treatment.It's just something I have to deal with. Does anyone know of a support group in the Houston area for late effects of radiation?

Janabeth
Posts: 5
Joined: Jun 2010

I think MD Anderson has support groups, and they have a followup clinic. PLEASE CHECK THEM OUT.
Why don't you send your story to ASTRO.org and see if they can direct you to a support group, too?

It's amazing to me how ASTRO's brochures talk about how well the body's healthy cells repair themselves after radiation! I wish people like you would start contacting ASTRO, ASCO, and the ACS. I read what they write about my cancer and send them regular things to correct.

American Therapeutic Radiation Organization
Amercian Society for Clinical Oncology
American Cancer Society

brian50's picture
brian50
Posts: 19
Joined: Feb 2010

Hi,

Any members have a transplant at least 25 years ago,if so i'd like to hear how you are and how life has been in general

Kind Regards

Brian.

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I had initial diagnosis for NHL 23 years ago and treated with CHOP and localized rads to the abdomen and pelvis then about a year and a half after recurred and had an autologus bone marrow transplant and total body rads.

Had battles with docs over the years as they wouldn't take my sypmtoms seriously but today it's a whole other ballgame. Apparently there are alot of us saying the same things to them,and have been for a long time, so today alot of the side effects are recognized. Still aways to go but better than after my transplant that's for sure.

I have early arthritis, lower back disc denegeration with arthritis in the spine, firbromyalga(that's going to be seen as connected to treatment in years to come I predict), nerve damage, chemobrain, fatigue from hell, severe tearing, hair thinning in cycles (from trauma they think), looks like teeth damage is starting to show, heart damage from adriamycin (have a pacemaker now due to extreme afib), respiratory issues - have improved a bit over the years), chronic infections, flu-like symptoms that come and go, kidney stones have started up and cysts gynecologically that haven't been tied to transplant but we will see. I think thats it. So far. The fun never ends. Oh ya and my marriage broke down not only because of the condition I am in afterwards but it played a significant part. I read somewhere there is a high number of failed relationships when cancer comes calling and sticks around too long, or its side effects.

Anywho that's my story. A price to pay for a cure. Was able to see my children grow up was the goal and that has been accomplished.

Take care.

Blessings,

Bluerose

wendyleigh27
Posts: 14
Joined: Feb 2011

Hi ya Brian-

Yes 25 ++years post transplant (1985) my senior year of high school- had total body radiation so fortunate my older bro was a perfect match

like others have the side effects more recently

HEP C - 1997

follicular thyroid cancer 3 years ago - thyroid removed and RAI

now salivary gland cancer surgery is set for Wednesday - they tell me this might not be due to Total Body radiation

would love to talk to others - for I try to stay hopeful !!!!

brian50's picture
brian50
Posts: 19
Joined: Feb 2010

Hi Wendy,

Hope this finds you well,

just read your post from Feb2011,how did your recent surgery go ?

I like you Wendy am a long term bone marrow transplant survivor,got mine from my youngest sister she was a perfect match. Mine was carried out at Glasgow ,Scotland 24 years ago. I was 27 years old and was being treated for Acute Myloid Leukaemia.

I am 51 years old and in full time employment,no other cancers to date that I know of anyway,short term memory is really bad though.

Have you managed to work,have a near normal life e.t.c , would like to know how things have been.

wendyleigh27
Posts: 14
Joined: Feb 2011

My life has been well even with the many secondary cancers- I was wroking full time in the non profit world until about a year ago and realized life is too short to sit at a desk

so I started working with kids after school care

surgery went well and am finishing up with my radiation treatment in 3 days!! yipee!!

I try to count my blessings every day

Best to you

brian50's picture
brian50
Posts: 19
Joined: Feb 2010

Sounds like you've had a bit of a hard time but you keep positive and are grateful with the cards you've been dealt.Do you still manage to party at the weekends,like you said life is to short to sit around moping ,we all need to get out and enjoy life and have as much fun as we can.

All the best

Brian.

dmarie725
Posts: 2
Joined: Mar 2011

Hi,

Did you have a bone marrow transplant 25 years ago?? If so, congratulations, that is amazing!

My husband had a bone marrow transplant about 9 years ago. I consider him a long-term survivor of his transplant, but it is really great hearing of even longer. How have you been since your transplant? I've been thinking about his transplant a lot lately (not sure why)...I think sometimes it seems almost impossible that you could have something like that done and go on to live a normal life. I think it's definitely helpful to hear from people like you.

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

Yes I had a bone marrow transplant 23 years ago for non hodgkins lymphoma. It was an autologus transplant meaning they took my own marrow then jetted it back into me after I was treated. I had total body rads as well.

Suffering many side effects that seem to keep building and now they recognize them as side effects but even 10 years ago they looked at me as if I had 3 heads, which I still might see due to all the rads, lol.

Hey if you don't have a sense of humour with it all then you really have problems.

All the best to all of you long term survivors.

Blessings,

Bluerose

oscarm
Posts: 1
Joined: Feb 2011

I have what I would call sunburn like feeling in radiation area. I'm looking for cures, help. Nerve damage is diagnosis. I've tried various drugs like nerontin, lyrica, tripylene. Someone told me to try infrared light treatments. I'm looking for help too.

wetz5526
Posts: 13
Joined: Apr 2010

I was diagnosed with lumbar sacral radiation plexopathy this past year as a result of radiation treatment I had 23 years ago for colorectal cancer. My symptoms are: buzzing, tightening, twitching and aching in my legs from my butt down to the tips of my toes. I do not have a "sunburn" feeling tho. It's awful because it's always there - during the day it's more tolerable as I'm busy working, running errands etc., but at night it's just awful. My Neurologist put me on gabapentin but I've had a hard time tolerating it. I get terrible headaches and backaches when I try to increase the amount (I'm currently on a very low dose). I'm going to see about trying lyrica. I also take vicodin which does help in calming down the legs expecially at night. I have also seen an accupuncturist which does help but only for a few days. I would be very interested in finding articles about late effects of radiation but they sure seem hard to come by. From what I've found so far, its pretty rare and there is not a lot out there as far as treatment for it. I would sure like to know what I have to look forward to...or not. I too am looking for any help as this nerve pain is just awful to deal with - makes you feel like you're going crazy.

Auzzie123's picture
Auzzie123
Posts: 9
Joined: Dec 2013

I have been diagnosed with Lumbar Plexopathy 12 years after cancer treatment including radiation... There is so little info and Iam ata loss as to what todo other than walking and gentle exercise to keep things going.. Fortunately Ido not have pain but the severe pins and needles and numbness and weakness in legs.. I also have Lymphoedema as a side effect but this stated straight after Ifinished treatment... How areyougoing since diagnosis?? Helen

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I don't know of anything that helps nerve damage but haven't investigated it thoroughly yet but do have it and my docs havent mentioned much to help.

I am sharing a couple of things about it. I have pain pretty much 24/7 and one of the newer diagnosis was fibromyalgia which personally I think can be linked to treatments too for some. See a rheumatologist and see if you have fibro.

Secondly something that helps me is a tempur pedic bed. I must have sent back 7 mattresses of various kinds cause I could feel every freakin spring in even top end mattresses - I truly felt like the princess and the pea - that children's story. Anywho I bought a tempur pedic mattress and I now can sleep through the night with no pressure point pain so I don't wake up as often. I think you can try out the tempurs because they are quite expensive so you might think about that. With fibro just being touched on the leg in some spots or arms is excrutiating and can be likened to nerve pain. Also my feet are always like ice cubes. I thought that was poor circulation but my doc said, no it's nerve damage symptoms too. I put socks on when I go to bed and that helps that cold pain too.

This sounds crazy but I get some relief from the nerve pain from plain old extra strength tylenol too. I take 2 of those as directed on the label and I tell you it helps me. Ask your doc if you can handle tylenol, your meds might not allow you to take it so best to check first.

Anywho, I hope you get some relief with some of this that works for me or through other avenues other might suggest.

Blessings,

Bluerose

dallen1
Posts: 9
Joined: Mar 2011

Hi Alan, Hello all. In 1979 I was told I had a lemon size brain tumor which had malignant tendencies the tumor was removed. I also was told I would have to go thru radition treatments. Now 29 yesars later I have had in the last two years Basal cell skin cancer on my hesd the cancer has been removed and is now a non factor. Then Thyroid cancer was detected and the thyroid was removed along with routine follw ups. Squemous cell cancer was then found in the left ear canal. The cancer,ear canal and ear drum were removed and replaced with a new ear canal and ear drum made from a skin graph from my hip. Cancer returned to my new ear canal and has been removed again along with routine follow ups. The two later cancers are believed to be a direct result of my past radition treatments. Radition is a mother but without it you and I probably would not be sitting here with smiles on our face. I too have had all the common side effects that go along with being around for a while after radition, but we are still on the green side stay positive and good luck to you all.

palmyrafan's picture
palmyrafan
Posts: 397
Joined: Mar 2011

Hi all,

I have multiple meningiomas that were resected in 1994. They were located throughout my brain, skull base, the 4 major sinus cavities, carotid artery and left optic nerve. I had surgery at the Cleveland Clinic followed by traditional radiation therapy in 1996.

I was told at the time, that not only were short-term side effects possible but to expect long-term side effects as well. I have cognitive issues, memory problems and I get frustrated easily. I was recently diagnosed with hypothyroidism and adrenal gland issues. The doctors told me this was caused by the radiation therapy and I will have to be on Synrhroid and Prednisone the rest of my life. I am only 49. After radiation in 1996, I immediately went through menopause (I was only 34) but luckily the doctors don't want to put me on HRT (hornome replacement therapy).

My tumors have also come back in the same places that were radiated. So for me, the radiation didn't work the first time and unfortunately, where I need it the most, at the optic nerve and optic nerve chiasm, I have maxed out. Can't have any more radiation. If I do, I stand a 60-70% chance of losing my vision.

The tumors have also fused into the left eustacian tube, left jaw bone and have almost destroyed my hearing.

We have been told that I am a candidate for radiation at the skull base and carotid artery but we have decided to take a pass on that. I'm one of those that is more interested in Quality of Time vs. Quantity of Time. I'd rather have 10 years of reasonably good health doing the W&W (watch and wait) rather than 20 years of crappy health because I had more radiation.

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

Over the last 24 years of my journey with cancer I have seen so many changes. In the first few years I was reporting all kinds of neuropathies and other medical issues that I KNEW were based in the treatments I had but there was no validation from the docs about it all then. Today they are even using words that we coined like 'chemo brain' and validate the effects of chemo drugs and radiation. Many of us were looked at like we had 3 eyes when we reported side effects way back when.

Ya ya I know, they didn't know, hmmm - the jury isn't in on that yet that I have heard but they are seeing more and more of us with the same complaints so now those who follow us are being validated more, right off the bat. That's a good thing.

But, what about us? We who have been subjected to invalidation for so many years - it can take it's toll. Just sayin, just being honest.

I am alright with it all now after all of this time, content to think 'it is what it is' and to trust my instincts more. I am taken way more seriously now that my docs have seen so many of us repeating the same things, same side effects over and over.

Validation is so important to our healing, better late than never. Right? Right, um, I think. lol.

Blessings,

Bluerose

sassy62
Posts: 8
Joined: May 2011

I'm a very long-term survivor of radiation. I had 2 operations for removal of astrocytomas near the cerebellum in 1959 and 1961. After the second surgery, I was given 6 weeks of cobalt radiation. (I was 11-12 at the time). I lost all the hair on the back of my head. I very hard thing for a 12 year old going into teens to deal with). But I went on with my life as best as I could. Went to college, married, had 2 terrific kids. Started losing my hearing 20 years after treatments (and yes, it is related to the radiation). After 3 grandsons and retirement, I thought that all was all behind me. Wrong ! A memenginona was found last month near the brain stem. It is benign, so I am told. I will be starting with CyberKnife treatments (concentrated and positioned radiation) in 2 weeks. The difficult part is they must be careful not to irradiate parts of my brain that were already treated with radiation. But I was also told that tumors will often occur near places that had been radiated before. Oh, gee. I really wanted to know that!

ASG
Posts: 4
Joined: Aug 2011

Hi all of you who have had hearing loss,

Please tell me/us how you have dealt with the hearing loss?
I have been to a few hearing specialist who tell me My hearing loss (based on two years of audiology test results), is completely unique. They haven't seen another patient with this problem. (all of them are aware I am a long term, 37 years, survivor of astrocytoma) But I guess my doctors haven't seen any of you. This hearing loss is maddening, my insurance doesn't cover hearing aids, and do hearing aids work for this type of hearing loss in any of your experiences? Advice anyone?

Mary

brian50's picture
brian50
Posts: 19
Joined: Feb 2010

Any long term survivors been diagnosed with brittle bones,I am due to get a bone scan tommorow.

blake001
Posts: 1
Joined: Jan 2012

hi all i has non hodgikins disease bcell lympfoma on my head in 1989 had lazer surgery radiation n chemo they promised me my hair will grow back never did i have a scar from oneside of my head to other i had to get extended radiation days because i got to tired after a week of radiation i was at mamomamadies hospital in brooklyn ny.. cant spell lol in 2005 discoved that from radiation on head n neck developed non cancerous nodules in my throat i lost all my teeth from the radiation it just fell out lol i have continous dry throat took me 6 res to say screw it im not wearing a hat no more finally the intense scalp itching stopped was going on for mre than 10 yrs after radiation ..

brian50's picture
brian50
Posts: 19
Joined: Feb 2010

Hi All,

just a quick post, I'm doing well at present, no health issues. My son left school this year and is at college studying Petroleum Engineering.Doesn't time fly.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hope you had a great celebration for your anniversary!  Isn't is a wonder we are getting to watch our kids achieve their milestones!

All the best,

Cathy

mean56
Posts: 11
Joined: Nov 2009

Congratulations!

nowwhat41
Posts: 2
Joined: Nov 2013

HI Alan! I am new to this site.  I also had radiation for Hodgkin's (in 1989).  I then had breast cancer in 2009.  I am having lots of effects of the radiation as well.  (bowel obstructions, thyroid nodules, heart problems and bone changes).  I'm 41 years old and recently feeling 101 years old!  Although you're a much "longer term survivor", I see what you're going through.  Do you have a doctor or doctors who are knowklegable about the long term effects of radiation? This is where I'm having trouble...they just don't have experience with this.

sunshine.dance
Posts: 21
Joined: Aug 2011

Hi, I don't usually post here as I'm on another online group.  I wanted to let you know that there is a whole online community of long term survivors with lots of experience in dealing with late term effects of chemo & radiation. I am a 40 year, 4 time cancer survivor and I learned alot from the list. If you're interested it's hosted through the 'Association of Cancer Online Resources' and the web address is: www.acor.org   They have 142 different 'communities' and I am with the Late Term Survivors group or LT-Survivors.  There is a wealth of info on survivorship guidelines at  http://www.survivorshipguidelines.org/ , to clinics located around the country that specialize in treating long term survivors and the many health issues that crop up for us. As a matter of fact, I may have found out about them from someone in this online group. Good luck to you on your survivorship journey!

Auzzie123's picture
Auzzie123
Posts: 9
Joined: Dec 2013

Thanks for posting this I will go and look at these  areas ...thanks 

mean56
Posts: 11
Joined: Nov 2009

I am a 53 years cancer cured. Born with Wilms Tumor - treated with Radiation. I am new here but I am so happy to read your stories. They all inspire me because I can relate to something in each post (well, almost). Frankly, just to find this was pure vindication - IT'S NOT IN MY HEAD! I'm not afraid more like empowered now. I live in Southern Colorado and am now on the lookout for long/late term effects professionals. Any advice?

Btw, congratulations on your survival.

Rottenweiler
Posts: 2
Joined: Dec 2013

I don't know If I am posting correctly, but here goes.  Back in 1966 I was admitted to University Hospital in Cleveland, OH for severe back pain.  After a miliogram? they determined that I had a tumor/growth/vascular malformation on my spinal column.  The doctors told me that they needed to operate immediately and that I had a 50/50 chance of ever walking again.  WOW!  After surgery they reported that this tumor was so entwined with my spinal cord, all they could do was grind some of my spinal column bone away to releive some of the pressure on the spinal cord.  The tumor was so entwined with the cord, that they were unable to take a biopsy to determine whether it was malignant or not.  The doctors then recommended that I undergo radiation to attempt to shrink the tumor and to reduce future problems.  They indicated that the biggest risk from the radiation was that I may become sterile.

I was 24 years old, newly married, new job,  in great health, recently graduated from college, in which I participated in wrestling, gymnastics, etc.   My wife and I decided to go ahead with the radiation and I was radiated everyday for 6 weeks.   Since that time, I have not had any issues with my back and have lived a very active and full life, including raising two great kids and as wrestling coach for 13 years.  I am now 71 years old.

The reason for this post is that unfortunately, approximately 10 years ago, I began to experience some weakness in my legs.  Almost imperceptable at first, but as the years progressed, it began to impact my ability to get around.  The first symtom began as a drop foot condition in my left foot and then the weakness progressed.  None of my doctors had any idea as to what was going on or causing this condition.  I now use a cane when walking and have a lot of difficulty going up steps.  Even getting out of a chair is difficult.  My condition has finally been diagnosed as nerve damage as a result of radiation.  This diagnosis came from the Cleveland Clinic Neurological Dept. and after numerous tests.  The doctors indicate that there is no cure and nothing can be done.  They even flat-out told me that physical therapy will not help other than slow down normal aging atrophy of muscles.  So far the doctors have been correct.  I work out consistently and the weakness continues to progress.  I have undergone physical therapy with no improvement and attempted accupuncture, again without any benefits. 

 Would I undergo this radiation treatment again, knowing what I know now?  Absolutely!  It just amazes me that the medical community is somewhat clueless as the the long term effects.  In fact, I did not know how common nerve damage from radiation is, until I located this site several weeks ago.  Thanks for listening and I wish a great 2014 to everyone.

ManuelaMM
Posts: 1
Joined: Sep 2014

Hello to everyone, 

I see that I share a similar history with many of you....

I was diagnosed at age 15 with Hodgkins Lymphoma in 1984 Stage 2A - had a splenectomy and recived upper mantle radiation...gamma, cobalt something like that for about 12 weeks.

I am 45 years old, never smoked and drink rarely. Have maintained a healthy weight until recently and excercised regularly for most of the past 30 years. I had a healthy child via C- section (2005) 8 years ago. No trouble conceiving and a trouble free pregnancy.

1996 - Hypothyroidism (still have my thyroid, although full of nodules)

1987 to 2001 weird inflamatory attacks for 2 to 3 days at a time. No real solution or diagnosis but VERY painful. ANYONE ELSE?!

2000 - discovered bone degeneration of my cervical spine. In 2009 2 herniated disks in the same area) ANYBODY ELSE!?

2008 - First lumpectomy of the left breast LCIS 

2013 - Lumpectomy of the right LCIS

2013- bilateral mastectomy - the choice was initially in order to prevent a diagnosis it turns out I had DCIS in the left breast.  DID NOT do chemo, radiation, tamoxifin, etc...

2014- rapid heart rate 98 to 100 , shortness of breath, feel asmatic...

Still finishing up reconstructive surgery for my breasts, hoping this new "heart trouble" isn't going to get in the way. Waiting for clearance , going back to the cardiologist next week. 

I too have had trouble finding an endocrinologist who looks beyond the surface of level ranges and who is willing to experiment with my dose. 

I would be interested in knowing what else is out there that I should be aware of...

Until now, I always felt so alone. Never realized there were so many of us  and so happy to have found this forum! 

Stay healthy everyone and NEVER give up! 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network