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Has anyone had Gamma Knife and whole brain radiation?

luvmydaughter
Posts: 6
Joined: Mar 2011

I had gamma knife following surgery that removed a brain tumor 15 months ago. My onco. suggested whole brain radiation to prevent future tumors. I don't know the side effects of that, and last week I had an mri and a small spot was seen where the previous tumor was. I may need gamma knife again. Im scared...I am 36 and have a 6 year old daughter. I really don't know what to do. I would appreciate anyone's advice. Thank you.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Let me say I am sorry for all you are going through.

My husband had whole brain (and spine) radiation in 1987 at age 21 for a mixed cell germinoma on the hypothalamus. That tumor has never returned, but in August 2009 he was diagnosed with three Anaplastic Astrocytomas and just last month was diagnosed with a GBM on the optic chiasm. The tumors of 2009 and 2011 were deemed radiation-induced. Having said that, he lived a very healthy and active lifestyle those 22 years in between. He tolerated more radiotactic surgery in 2009 (33 treatments) for the AAs, and the AAs are gone, but he started losing vision in Nov '10, which they now have confirmed is a GBM. He's now completely blind.

Having said all that, one set of doctors is considering if this tumor has stayed encapsulated in the optic chiasm after his next MRI (hopefully the end of next week), they suggest gamma knife radiation. They are only considering it because he is blind and because his tumor is not behaving like a normal GBM (not as agressive yet).

So, while ALL brain tumor situations are unique, more radiation is possible. We must all just assume the risks. With this disease - brain cancer in general - sometimes radiation is the best option, along with chemo, etc. to beat this thing. It's just frustrating when doctors have differing opinions.

I would definitely seek a second opinion, if possible. When my husband's 2009 tumors presented themselves, some doctors felt he could never have any more radiation after WBR from 1987. Well, he tolerated it well 22 years later, and those tumors are gone. Mind you our situation is extremely rare, and I pray will never, ever be the norm for anyone. Even now with a stage IV GBM, we may be placed in the position to do yet more radiation. It's like I tell my husband, "What do we really have to lose with this diagnosis?" We may have everything to gain - as in a prolonged, healthy life.

My husband's been blessed with an amazing brain. His cognitive skills I would say are amazing. His long-term memory is unaffected by all the treatments. He's fatigued beyond measure some days, but he's in no pain and is an example of someone enduring not only the diagnosis of a GBM with grace but complete blindness, like it is a stumped toe that will heal. I can tell you his faith and endurance have given me great hope and strength each day.

I'd be interested to know what you decide, and I'm sorry you're being placed with such a heavy decision. Complete healing to you!

luvmydaughter
Posts: 6
Joined: Mar 2011

Thank you for your concern. I first had breast cancer in 2008. I was treated with a mastectomy,chemo and radiation, and I didn't really have any problems with that...other than fatigue and hair loss. After my first brain tumor was removed in 2010 and I had the gamma knife I went to a follow up with my main oncologist. She suggested WBR in hopes that it would stop tumors from possibly returning. I then made an appt. with the radiation oncologist who performed radiation for my breast cancer and he said it could only be done once. That scared me because I thought "what if numerous tumors showed up, and WBR would be the standard treatment for that? It wouldn't be able to be done a second time."
But you said your husband had it done twice. I am definitely going to write down a list of questions for my doctor when I see him April 18. It sounds like your husband has tolerated his treatments pretty well. That is wonderful!! I know that everyone's situation is different. I am so glad I happened to come upon this site. I feel better talking to people who are also dealing with a cancer diagnosis. You and your husband are in my prayers. Angie

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