Longterm effects of radiation therapy

radiation
Well Gary I am sorry. My name is Garry also but my parents used the old english spelling with two R's. I had lymphoma in my face in 2003. Half my sinus is full of scar tissue. It took five years to talk a doctor into fixing my nose so I could breath through both sides. During the operation he found out a bunch of bone was gone as radiation can thin bone. They had to take some out of my sinus cavity to rebuild my nose. Then my neck filled up with arthritis and started to degenerate. Nerves got pinched off and I lost the use of my left arm for three months. Now I live in pain most of the time as no one will touch my neck. It seems the radiation made the bone so brittle that a fusion or any operation could leave me in a wheelchair for life. So here I sit on disability at 54 years of age. And I lived one heck of an active life also. If you scan the pages of Emotional Support you will find others with problems from Radiation. I tried to go to the best doctors available for answers when I started having problems. I would hope you do the same and get second opinions. Slickwilly

effects
Hi there Gary. I had non-Hodgkins when I was 22. I had to have 8 rounds of CHOP chemotherapy and 6 weeks of radiation to my chest. I had about a 40% chance of cure.

I am dealing still with after effects.

Today I am 36. I was just diagnosed with breast cancer-it doesn't run in my family. The radiation put my at high risk for breast cancer and I did my yearly mammograms faithfully. Right before this year's mammogram I found a lump. And so goes the story...

I have cardiomyopathy from the chemo and radiation both. I have to be on heart medication for the rest of my life. I also have scarring on my left lung and diminished pulmonary capacity.

So yeah, the after effects really suck.

I have been as active and healthy as I can be considering. And all I know is it was worth the last 14 wonderful years that I have had. Even with having to do this all again-which SUCKS. But I have two beautiful daughters and a good family.


I hope they are able to help you with your aorta. It sounds very serious. Just keep your chin up!

long term effects of radiation
Hi there- I was also treated w/ mantle radiation- there is a long term follow up dept. at Sloan Kettering in NYC Dr. Kevin Oeffinger I have also heard about aortic problems-

Best to you

HatTrick said:

Heart problems following radiation
Hello, Gary.
I wonder how your heart valve problem turned out, whether you are able to have surgery or if there's anything else that can be done to help you. Doing the math, I figure you had radiation treatments in 1969, the same year I had full mantle radiation for Hodgkins.

I have just discovered a survivorship clinic and we're looking into heart problems now. I've known for a long time that something isn't right, but I thought it was all due to diminished lung capacity and/or normal aging. Now I know there's heart damage too.

I was afraid I might be headed for surgery again, but reading your comments, maybe I should be more worried that there's nothing to be done, which would be disappointing. On the other hand, I've had 40 pretty good years, and I may not have to save as much for retirement!

I hope you're doing well.

Hodgkins Radiation Therapy
I have been looking for a doctor that knows about late effects of radiation for a long time. I had Hodgkins Lymphoma at age 3 in 1969. 66 radiation treatments to the full mantle field!! This was bitter sweet. I am alive after being told I was terminal. But the effects have been damaging. I just went through a secondary cancer, papillary thyroid, due to the radiation. I have diminished lung capacity. Although, I can't get one of my doctor's to understand what I am experiencing even the pulmonologist! Connecting with other people who have similar situations would be great. If you have any information about resources I would really appreciate it.

I hope you are doing well now and look forward to hearing from you.

CarolinaTwin said:

Hodgkins Radiation Therapy
I have been looking for a doctor that knows about late effects of radiation for a long time. I had Hodgkins Lymphoma at age 3 in 1969. 66 radiation treatments to the full mantle field!! This was bitter sweet. I am alive after being told I was terminal. But the effects have been damaging. I just went through a secondary cancer, papillary thyroid, due to the radiation. I have diminished lung capacity. Although, I can't get one of my doctor's to understand what I am experiencing even the pulmonologist! Connecting with other people who have similar situations would be great. If you have any information about resources I would really appreciate it.

I hope you are doing well now and look forward to hearing from you.

Carolina Twin - Heart Question
I'm not sure where you are located, but at least from your name, you might look into a Dr. Rosoff, I believe at Duke University, at least for leads.

I have several more resources depending where you are.

I am in fact, seeing a new cardiologist this week for my own issues. As opposed to my last cardio, this one has studied late effects of rads and chemo.

Paul E (Hodgkoid2003)

bgdbgd said:

clinics in DC?
Paul, do you know of any doctors or clinics interested in late effects of radiation in the DC area?

I was treated with mantle radiation for Hodgkins in 1972, and now have all kinds of chronic health problems, as well as pronounced weakness in the chest, shoulders and neck.

BGD

Clinics Near DC
BGD,

Johns Hopkins Cancer has a long term clinic. A little further north, University of PA. Further north than that, and age treated may be an issue, would be Sloan Kettering in NYC. Those would be the places to check first.

Paul E (Hodgkoid2003)

cher26bear said:

Hi there,
I wish we had the
Hi there,
I wish we had the long term clinic's here in Ontario....I had Hodgkins disease 1991 when I was 17. Treated with front mantel 30 gy and 50 gy. Then 30 gy lower abdomen. 2A stage.
Thyroid gave out immediately. Now I have searched to find out the late effects. I am 35 and have had 2 biopsys to date to check for breast cancer.(that was last year) I just went for a follow up mammogram and ultrasound for breast cancer again. My doctor sent me to a breast cancer specialist and although she is not 100%...feels my risk for breast cancer (lifetime risk) is around 40%. I feel like there is no follow up. My doctor admits not knowing the late effects from radiation....I just want to be educated and find this so frustrating!! I also am looking into getting a Subcutaneous mastectomy. The breast clinic doctor really didn't give a recommendation. Tamoxifen was a recommendation--but I hear that due to my radiation...I shouldn't be on that. (DR..didn't know) MRI's usually always end in biopsys...even though it may end up with nothing...If anyone know more about this...please let me know!! Thanks so much!!

Breast cancer after radiation
I had Hodgkins at age 19, was treated with 5 weeks of front mantel radiation. At 48 I got breast cancer. I had a single masectomy March 31st, 2008. A mamogram did not show the cancer it was an MRI and then a MRI guided biopsy. I not have a mamogram and an MRI annually staggered so I have one every six months for the other breast. My understanding this is what is needed in our situation. Does anyone know the chances of getting breast cancer in the second breast?

HatTrick said:

Heart problems following radiation
Hello, Gary.
I wonder how your heart valve problem turned out, whether you are able to have surgery or if there's anything else that can be done to help you. Doing the math, I figure you had radiation treatments in 1969, the same year I had full mantle radiation for Hodgkins.

I have just discovered a survivorship clinic and we're looking into heart problems now. I've known for a long time that something isn't right, but I thought it was all due to diminished lung capacity and/or normal aging. Now I know there's heart damage too.

I was afraid I might be headed for surgery again, but reading your comments, maybe I should be more worried that there's nothing to be done, which would be disappointing. On the other hand, I've had 40 pretty good years, and I may not have to save as much for retirement!

I hope you're doing well.

Scheduled for Heart Valve Replacement and 3x bypass
I was treated for hodgkins disease at age 10 in 1974. High dose radiation to upper body, removal of spleen and Stage IIA. Thyroid removed in 91. Heart murmur detected three years ago. Aortic valve is in severe condition and two ca blocked. Heart damage due to radiation treatment. I have been in good health most of my life with symptoms progressing and escalating over past two years. Looking forward to mechanical valve and hope to go wilderness canoeing in late summer. Bruce

Bonebrake said:

Scheduled for Heart Valve Replacement and 3x bypass
I was treated for hodgkins disease at age 10 in 1974. High dose radiation to upper body, removal of spleen and Stage IIA. Thyroid removed in 91. Heart murmur detected three years ago. Aortic valve is in severe condition and two ca blocked. Heart damage due to radiation treatment. I have been in good health most of my life with symptoms progressing and escalating over past two years. Looking forward to mechanical valve and hope to go wilderness canoeing in late summer. Bruce

What radiation has done to me
Interesting web site.

I had Hodgkins in my neck when I was 17 (1972, now 55, so 38 years ago).

I had radiation. 200 rems per day for 19 days (3800 total), mid chest to base of skull. In case your wondering, 800 rems whole body in one dose is enough to kill you.

They did a destructive inspection on my spleen and a general exploratory (no cancer down south).

I now have:
underworking thyroid, on thyroid pills for life

fibrosis around the edges of my lungs (where they didn't use plates of lead to protect me), no treatments, yet

I had a massive heart murmur due to calcification (aortic stenosis), 13 weeks ago I had a pig valve installed, and a triple bypass. Doc says there was more calcification in there than he expected.

I an experiencing some hearing loss, and I'm wondering if it isn't radiation induced.

I have general weakness of the bones and muscles in my upper chest. I have broken many ribs and collarbones racing motorcycles. Feel like my neck is arthritic, and have muscle spasms in my upper back often. Also had rotator cuff surgery, and I have a torn bicep tendon. Don't know how much of this I can blame on radiation.

Glad to be alive, but it's tough sometimes to maintain gratitude.

Thanks,
Mike