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Need advise on whole brain radiation. Please help

marijune
Posts: 45
Joined: Jan 2010

Hi,
I had lung cancer and lobe was removed 2 months ago. I just had a mri that shows i have 5 small c cels in the brain. Doctor recommends whole brain surgery since there are 5 tumors, but i know there are other options but am confused which way to go. the tumors are small.I have heard of gamma knife but dont now if its better than whole brain treatment. The thought of permanent hair loss is also devestating. Can anyone help me with answers to whole head radiation? what are advantages and dis advantages. I am very scard. I dont know what options are best for me. Any help will be very appreciated.

chancesuka
Posts: 6
Joined: May 2010

My family are new to this whole cancer thing so I am not any kind of expert. My son just finished 6 weeks of whole brain radiation for a grade 3 astrocytoma. He had some radiation burns to his head- not painful- just that the pattern of the mesh was burned onto his scalp. He has had some loss of his hair but that was also because he was on chemo at the same time. We were told that there can be some residual cognitive losses from the radiation but it was a risk we were willing to take to try and give him a fighting chance at survival past the 2-3 years they gave him. The whole process was scary to the extreme but we had to put our faith in the Dr. that this was the best treatment. My son's tumour was too large for the gamma knife- not that it was even available yet in our area. From the little we know ,it is not uncommon to have surgery AND then undergo radiation. My heart aches every single day for the emotional pain you and my son have to bear. All the best.

denthead
Posts: 2
Joined: Aug 2005

Chancesuka,
My best wishes for your son. I had surgery and WBR 9 years ago, still kickin'! Keep his cognition stimulated. Also, if he has not had full cognitive testing done - do so. This will be important as he grows to retest in future to check for changes. How old is he?
My best!

Oly
Posts: 19
Joined: Apr 2003

When I was diagnosed, there were a number of tumors in my brain, one, 10mm across in my cerebellum was surgically removed during my first hospitalization, and since then I have undergone Gamma Knife, and 25 whole head radiation treatments. There was also a 40 mm tumor between my right lung and heart removed surgically, leaving numerous lesions in my brain. To say the least, I am not the man I once was! The baldness doesn't bother me at all (my wife's 4 brothers are all bald). My biggest problem is the way the brain cancer spread around between my speech center and Cerebellum I often do not know from whence I am coming or whatever is under discussion. As a "recovering" lawyer of over 30 years, this is distressing, to say the least. Yet, here I am, heart attacks, strokes, seizures and brain cancer notwithstanding, I persevere and determine to keep doing so!

It is more than a year since diagnosis, and I feel stronger day by day!

denthead
Posts: 2
Joined: Aug 2005

Marijune,
I hope this isn't too late. I had WBR 8 years ago. It is very unpleasant but probably saved my life. Take radiation oncologist advice as to gammaknife or whole brain.
Let me know how your doing.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Denthead!

I'm a denthead too, we should form a club! Mine is in the left parietal lobe :)

stayingcalm

chancesuka
Posts: 6
Joined: May 2010

Thank you for the encouragement. Nick is 28 years old...6 ft 5 in tall and appears the picture of health. Sometimes it is so hard to imagine what he has been going through. He just had a few bad days and turns out it was related to his dilantin level. He now has a neurologist who will be taking care of that aspect of his illness so some good did come out of the bad. Negotiating the medical system can be a nightmare and there are a lot of negatives. We have already learned to pick out the angels amongst the medical staff.
Thank you for the words of encouragement. I will pass them along.

June

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