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Long-term Hodgkins disease mantle radiation survivors

micheleb
Posts: 3
Joined: Sep 2010

Hi, my name is Michele and I was treated in 1996 for HD with mantle radiation. The main long
term effects so far are fatigue, general aches and pains and anxiety. I also have a TSH of 4.2 which is borderline hypothyroid. I worry a lot as I have young children and I am hearing
so much about the increased chances of breast cancer and heart disease.

I mentioned the anxiety; well, that is anxiety to go to a doctor and get these things checked out. I don't know if the odds of getting heart disease is worth the scary testing. I would be interested in correspondence with other survivors who know what I am talking about. It is sometimes hard to express your concerns or symptoms to a world that says "You're cured now
get over it". I mean, I would love to just forget the whole thing ever happened, but it
isn't possible. I don't think about it that much anymore,but sometimes I think too much.

Anyway, contact me if you wanna talk. I do not have a lot of spare time during the day and I just joined but hopefully I will be up and running.

(another late term effect may be slight ditzy-ness, I am not sure)

jeff41444
Posts: 1
Joined: Dec 2010

My wife had HD when she was 23 which is 40 years ago. Aside from having a weak immune system, she got a lot of sore throats and colds in the brgining after sucessful treatment with radiation she had minor side effects for 27 years. We had 2 healthy children during the first 5 years after treatment. 27 years later she deveoped a beign tumor on her thyroid which was removed and a year later she developed non Hogkins Lymphoma, which was sucessful treated with CHOP chemo. After 43 years she has developed Pancreatic cancer which is is currently being treated for. All the years she taught school even will getting radiation and chemo.

AS a spouse of a survivor I can say that you never get over it, but you shouldn't let it get you down and tyou have to live your life to the fullest and best way you can and don't let the normal trubulations of life get you down or bother you because only one thing really matters and that is your health and seeing your oncologist regularly.

My wifes oncologist says that whatever treatment that she received was the best they could offer at the time and everything that you take has long term side effects eventually, even asprin. If you get side effects or something later in life we will deal with it then, you can't waste your life worrying about something that may or may not come about.

Idon't mean to be cold or unsympathetic because I do have a lot of empathy for people that have under gone treatment, but you cannot let the desease control your life.

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

Hi Michele!
I had rads in 1989 and ABVD in 1994 for HD. In 2008 I was dx'd w/Invasive Ductual Carcinoma, most likely from the radiation theraphy. I recently have seen a LT Effect Specialist at MSKCC in NYC. Closely watching cardiac issues.

Since the BC, I have had some anxiety, namely because I don't feel as well and secondly, I couldn't have rads or chemo or HT to treat the BC and lastely, rads and chemo have damaged my heart. Compounding this is...I too am a mom to a 14 and 17 year old. Being a mom brings a whole different mind set to dealing with our issues. I am now trying to find the optimal balance of being aware of the LT effects and being proactive and just tucking all of this away and not let it interfere w/ living. I truely understand what you have gone through and what you are now experiencing.

Contact me as well if you would like.

Cathy

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