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kddjgong
@kddjgong

Posts: 4
Joined: Oct 18, 2017

Risk on radiation as brain tumor postoperative treatment

Posted by @kddjgong, Mon, Jun 4 11:19am

My relative just underwent brain tumor resection in Mayo over a month ago. He was then referred to the local medical facility for radiation therapy. Initially we were told that the radiation is a standard procedure, necessary for patient in 60's with partial tumor resection. It should be done within 4-6 months after surgery, even though the tumor is low grade glioma. However the local neuro-oncologist insisted that radiation would cause permanent memory and cognition damage. For instance, the patient might not recognize his own family members if it happens, as we were told. So the postoperative treatment plan has to be changed to chemo-therapy only and then wait/see MRI update every two months. Apparently, this local opinion largely differs from Mayo's original plan. I wonder if anyone on the Connect with similar situation has experienced such severe memory and/or cognitive side effect. Any input is helpful and appreciated.

REPLY

hello @kddjgong Nice to e-meet you here. I am so very sorry to ready of your relative's healthcare journey and battle with brain cancer. I am Scott and my wife fought her brain cancer for 14+ years. She, too, had a low grade glioma at first as well as a partial resection. Please note her situation unfolded back in 2002 so things maybe quite different now. Plus I am not any kind of medical professional, so I just relate her situation and experiences.

Her initial diagnosis was at a facility in Chicago, with her second opinion and resection at Mayo in Rochester. As we know, each patient and their cancer are unique in that there seems to be no 'one-size-fits-all' manner in which they progress, are effected, etc. I believe this is especially true when it comes to brain cancer.

In my wife's situation, due to the location of her tumor (right frontal cortex), its size, her being left-handed, and post-operative complications her surgeon and neuro-oncologist offered her radiation, chemo, and wait and MRI as options. After extended consultation with her neuro-oncologist he suggested she consider not undergoing radiation due to the threat of serious damage potential to her quality of life. Her initial post-surgery complications were so difficult and significant, she made the decision to forego both radiation and chemo. As I said, though, each case is unique to the individual and she had made an early decision that she would always opt for quality over quantity in her care decisions.

I don't know that this helps, but as I said it is just one example of one experience.

Strength, courage, and peace.

I had a brain surgery (craniopharyngioma) in June 2015. I was 63 years old at the time. I was treated with proton beam radiation at Mayo in Rochester. Yes, I have some memory loss. And some of my thinking is not as sharp as it had been earlier. I attribute those changes to aging and to focusing on present issues. I suggest speaking to several providers of the radiation treatment. If more extensive affects are a concern then I would question the accuracy with which the radiation beam is aimed at the target area. Once you have gathered several opinions then you will be prepared to make the choice that makes you feel most comfortable. @rubyjane

My husband had a brain tumor removed in 2010 in Fargo. The cause of his tumors is having radiation as a toddler due to leukemia. In Fargo they also removed a major blood vessel in the front of his brain still don't know why. Since 2010 he is constantly battling stabbing headaches, dizziness, loss of vision, loss of mobility and has seizure like episodes that make him go unconscious for a few hours. No doctor can tell us why he is experiencing this nor prescribe any pain relief. We are still on a waiting game to figure out what the next step is. We have 4 children under 15 and its stressful on the kids to watch him go through so much pain instead of playing with them.

What about proton radiation?

@jstow07

What about proton radiation?

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I'm interested in proton therapy for my AN but fear it is too big.

What kind of radiation? What about proton radiation or similar types that is less damaging?

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