survivor of childhood HD

mfunes

My mom was treated for HD when she was 17 years old and was treated with radiation. She is now 49. Last Nov ('02) she found a lump in her breast which turned out to be pos for cancer. she was treated with radation again and now needs to begin taking tamoxophin. In Aug. (03) she went to the dermatologist who found and biopsied skin cancer on her hip. It was positive for stage III melanoma. The doctor's can't tell us if these more recent findings are due to the intense radiation she had as a child or what. This week she is having the area removed and one lymph node removed to be tested. She is not dealing with this very well. She is very depressed and having a hard time concentrating at work. I've tried to get her to go talk to a psych or a support group but she thinks it won't help...she feels like she's the only one going through this and that no one understands. Of course, not having to experience this myself, I don't know how this feels for her and I can't relate. I don't know how to help her. I go with her to the doctor's appointments and try to remind her to take one step at a time. I try to remind her of all the things she has to look forward to and to fight for but this doesn't work all the time. She kept up with her follow-up appointments after the HD treatment for about 5 years or so but then stopped going. Just the other day she told me that she didn't want to go because she didn't want them to tell her she had cancer again and now realizes that was a big mistake. She also told me she was scared to die and doesn't want to go yet, something she's never brought up before. Many times during this last year she has said she has wanted to give up and is too tired to fight any more...even still she continues her treatments which is good. to add to all of this, she is divorced and is very worried about finding someone who will accept her with her disease and the scars left from all the surguries. Anyway, I was wondering if there was someone out there who has had similar experiences who could give me advice or hope or something to help my mom and my family deal with this. It is really hard.

You can e-mail me directly at mfunes1@earthlink.net

Thank you in advance,

Martha

lindazame

Hi,

Your mom is not alone. I run an internet discussion group for long term survivors of childhood/adolescent cancer and there are many members of our list who have had secondary cancers related to treatment. In fact many of the female HD survivors who are 20 or more years out of treatment have developed breast cancer. If you or your mom would like to join this internet support feel free to contact me.

Also your mom might find the book Childhood Cancer Survivors very helpful by Nancy Keene. You can find it at Amazon.

And finally your mom should be seen by physicians who are aware of late effects. There are some places through out the US that are now seeing long term survivors.
Linda Zame
(zame@earthlink.net)

tfitz

Hi my name is Tara and I have just recently fell out of a 7 year remission. I am once again fighting non hodgkins lymphoma. I was 14 when I was first diagnosed and after all was said and done I was convinced that I could never be intimate with anyone. The steroids had destroyed my body not to even mention the scars. Dont worry about that you will find someone. I have a wonderful boyfriend who didn't care what my body looked like 2 years ago and doesn't care what I look like now (even with new scars and no hair) I also went to I think 3 check ups with my oncologist in the whole 7 years I was cancer free. I didnt want to know and I though that I could never handle being told again. Two months ago I felt a lump on my neck. I knew what it was but tryed to ignore it. I tryed to convince myself that it was something else. Well it wasn'tand I'm glad I went to the doctors when I did. I have been through 2 cycles of treatment and I am astounded with the progress they have made in 9 years. I have a bumppy two year road ahead of me, but the doctors say that there is no reason why I should not be optimistic. My Dr. and I are going to get it all this time around and so will you. Best of luck and if you need to talk write back. (:

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