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New to site- Late radiation effects

DC8
Posts: 1
Joined: Oct 2017

Hellp everyone. I am new to this site, but not to cancer.

I wanted to reach out to other servivors to compare notes. (Please forgive spelling and/ or terminology errors. Neither a strong suit!) 

 

I was diagnosed with Hodgkins in 1976 on my 16th Birthday. Treated with several surgeries (including laporaodimy w/ splenectomy)  and full mantle inverted Y cobalt radiation. Once recovered from the intial treatment it seemed like smooth sailing; that is until I got about 20 years out! Since that time its been one thing after another. Started with thyroid cancer (Herthel cell carsenoma) with retraction, Aortic vavle replacement, lower jaw rebuilt twice, spinal fusion, some muscular wasting (especially in my neck), flares of cronic pain and fatgue, vision and hering loss and difficulty swallowing. Are these common issues post radiation therapy of just 'bad luck?'

The latest issue I don't know how to describe, but I go into bouts of confussion. The are short lived, but always proceeded by a numbing or mild trance-like state and the strong metallic taste, which is exactly what I experienced during my radiation treatments as they were administered. Kind of freaks me out! 

Anyone have similiar experiences? Are these cancer treatment related? If so do I have others to 'look forward to?' Any advice for going forward?

I appreciate any responces,

DC8

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3044
Joined: May 2012

DC8,

You probably need to speak to a radiation health professional.  The form of radiation you received is not used anymore, so current writers are unlikely to have first-hand knowledge. (Cobalt 60 is still in use, but with differnt guidance and delivery systems).

Just guessing, you have so many widely-dispered issues that it wold be doubtful that therapeudic radiation could be causing all of them, but which ones it might indeed be causing only a real professional could sort out.  Probably no one could ever render answers to this with total certitude.

The same is true of chemo: Some drugs cause some things in some people, in other people it does not.  Our bodies are so complex.  To say that "this drug did this to me" is virtually always supposition to some extent.

Of all of the symptoms you listed, thyroid cancer and the heart valve replacement are the ones I most frequently hear linked to radiation.  I would suspect that they would have had to have received significant Gray ('Gr', units of radiation) to the chest and neck for a link to be reasonably investigated. 

max

yesyes2
Posts: 568
Joined: Jul 2009

Hello,

I don't know where you reside but you need to contact a major medical center if at all possible.  You would benifit from seeing a long term side effects specialist.  The type of radiation you received is know to cause many of your issues, heart valve problems, thyroid cancer, breast cancer and many more.  Sorry you are contending with so much.

Leslie

BurkittsSurvivor79's picture
BurkittsSurvivor79
Posts: 5
Joined: Mar 2018

Well I am from that wretched treatment time period too. I am a non-hodgkins survivor, Burkitts, diagnosed in 1983, age 3. 

I got thyroid cancer at 23 years out. Feeling worse as years go by. So sorry you have gone through so much. I have spent last decade just reading about late effects. Yes, its all part of it. 

F. Jean's picture
F. Jean
Posts: 1
Joined: Aug 2016

Dear DC8: I am so sorry you had to be diagnosed on your 16th birthday. That's awful. I was diagnosed, by my six-week-old's pediatrician,  at her regular check up. Not the best timing either, but cancer never just waltzes into your life, and says, "Now, we're gonna have fun". (If, only.)  Anyway, back to your symptoms, as I was treated in 1982, and you in 1986, both with the same horrific ways, many of your symptoms ring a bell with me.  My thyroid was the first, followed by muscle wasting, (never could understand that ), chronic pain and fatigue, this annoying metal taste in my mouth, serious heart issues, (had 16 ablation two years ago-IST/SVT), restrictive lung disease and these constant sores on my tongue and cheeks, my spine was so badly damaged I have Lhermitt 's Syndrome, which basically means you can't touch my spine and the pain that radiates from it is unbelievable. You also mentioned difficulty swallowing.  Mine got so bad that my GI did an endoscopy to see what was up. Plainly, the tissues, muscles, etc, are stiffening.  It will get worse, at which time they can put a tube down your thoat to dilate it back out .  In the meanwhile, I make sure I have a lot of liquid when I am eatimg. You also mentioned confusion.  I get confused sometimes, as well.  (I grow tired of the blonde jokes.It's not that at all.)  The radiation caused me to loose my hair way above my ears, so I am thinking that direct radiation plus scatter radiation didn't do my brain any good.  I think the moral of the story is, they really should have prepared us better when we were young. You were still in High School, and I was a brand new mom.  A lot of the things we complain about, you can't see, so we are dismissed.  It's very frustrating. I do go to Yale New Haven, to "HEROES ".  It is a place for long term survivors, where they try to coordinate the gazillion doctors, as well as, I participate in helping them thru the Smilow Children's Cancer Center. They use my tests, dna, etc. to ensure that no one else ends up like us.  It's very sad when I go there, and see all those little kids, but it makes me feel good to know I am making a difference in their future. I wish you luck DC8.  Let me know how you are doing.

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