High grade Glioma - What questions should I ask?

Oh Eileen61! As I understand you! Last fall, my neurosurgeon did not dare give me my diagnosis, GBM grade 4. I learned it from another doctor who had my file in hand. I will never forget this November 7, 2018. I was devastated. After that, I spent several weeks feeling like a death row in "the death corridor." It's awful!
I quickly realized that my neurosurgeon had not told me anything because he knew that my diagnosis was not clear. Neuro-oncology is an embryonic science. It's a medicine that does not know much. The neurosurgeon who is following me now is reputed to be one of the best in Canada where I live, and even he often tells me that he does not know what is happening with my tumor. He is searching. It is terrible for the sick people who can not be treated, but at the same time, this bad knowledge is like a breach that gives way to hope. Some people survive. There are so many unknowns. Why would not be myself an exception? According to my readings on the Internet, I should have died in spring 2019. But I'm still there, and rather in good condition! Why would not you be an exception? One of those people who will have the chance to grow old?

The letter M of the GBM means Multiform. Each GBM is unique and even cancer cells in the tumor may be different from each other. It is a tumor that can take many forms. You are at the beginning of a long battle but maybe it will not be as difficult as you imagine now. No one knows the future. Perhaps the care that will be offered to you will not diminish you as much as you can anticipate. Request multiple opinions.

A familly doctor, new friend who has a GBM like us, talked to me about a very good book: Radical Remission of Kelly A Turner. She met cancer survivors and became interested in the commonalities they had. She has selected 9 points in common. I am reading it now. It helps me. It could also help you.

There are things you can do to build strength. You can do the ketogenic diet, take DCA and EGCG supplements, do yoga and meditation ... You have to breathe and rejoice to be always there, even in panic, it’s a proof that you are alive! Your pain touches me so much. Above all, do not be embarrassed to go for help. There are readings, like Irvin Yalom's, Staring at the Sun, which helps to get your head out of the water, to breathe.

No one knows the future. Not even the doctors, specially concerning brain tumor. We have unsuspected strengths in us that can help heal. I'm confident that you'll get by, that you still have good years to live. Breathe.
Kisses.
Catherine marcyprof

Just a quick note in support of and in gratitude for @marcyprof's message. Beautifully written. My husband underwent surgery May 13, 2019, and subsequently had radiation and chemotherapy treatments at Mayo for six weeks. He is doing very well ... feeling good and still working. We're anxiously awaiting his follow-up MRI in a few weeks. In the meantime, we're also reading books, including "Radical Remission" by Kelly A. Turner, Ph.D., which provides a great deal of hope. We're following the advice and are optimistic about the future. I recommend it as well. Also re-read that last paragraph of Catherine marcyprof's message ... "No one knows the future ... We have unsuspected strengths in us that can help heal ..." God bless you and everyone who is facing this devastating diagnosis. Keep the faith.

@eileen61 Hi, I’m Becky. I didn’t have a brain tumor like you, but an inflammatory lesion on my brain. I know exactly how you feel with all the unknowns swirling around you! I was so upset and angry and just wanted it to be over and let me get back to my life. That never happened. One thing that was very helpful from the beginning, was my husband kept a log of everything. Who we saw, what tests were done, questions asked, answers, etc. I’m so glad he did, because I don’t remember the first few weeks at all. Have your husband go to ALL appointments and take good notes! You can even use the recorder on a smart phone and send it to yourself via message or email. Keep a spiral notebook handy and write down questions you want to ask. Make different sections for each specialty you see. Mine is divided into primary care doctor, neurologist, oncologist, ophthalmologist, etc. That way I have all my info in one place. And I should add a therapist to the list! Mine helped me get thru some of the tough times and gave me ways to deal with my anxiety and occasional panic attacks. I kept saying, “I’m a nurse, we help others. I’m not one who needs help.” But I guess I do. I wish you all the best as you start your journey. I only wish I could be there and walk with you.

@eileen61 Hi, I’m Becky. I didn’t have a brain tumor like you, but an inflammatory lesion on my brain. I know exactly how you feel with all the unknowns swirling around you! I was so upset and angry and just wanted it to be over and let me get back to my life. That never happened. One thing that was very helpful from the beginning, was my husband kept a log of everything. Who we saw, what tests were done, questions asked, answers, etc. I’m so glad he did, because I don’t remember the first few weeks at all. Have your husband go to ALL appointments and take good notes! You can even use the recorder on a smart phone and send it to yourself via message or email. Keep a spiral notebook handy and write down questions you want to ask. Make different sections for each specialty you see. Mine is divided into primary care doctor, neurologist, oncologist, ophthalmologist, etc. That way I have all my info in one place. And I should add a therapist to the list! Mine helped me get thru some of the tough times and gave me ways to deal with my anxiety and occasional panic attacks. I kept saying, “I’m a nurse, we help others. I’m not one who needs help.” But I guess I do. I wish you all the best as you start your journey. I only wish I could be there and walk with you.

That's awesome! It's true, we aren't the statistics, we're people. I'd be happy to be a positive outlier. I'm looking for those books as we speak. Knowledge is power!

@eileen61 The first message from me that you ‘liked’ was only part of the whole message. Somehow, my finger hits something and either deletes the message or posts an unfinished one. Oh, well!

Another book I'm reading is "Anti Cancer - a new way of life" by David Servan-Schreiber, MD, PhD. He also was diagnosed with GBM and battled it for 19 years. Good advice on diet and supplements - things we can control.

BTW, the nine key factors in Dr. Kelly Turner's radical remission book are:
1. Radically changing your diet
2. Taking control of your health
3. Following your intuition
4. Using herbs and supplements
5. Releasing suppressed emotions
6. Increasing positive emotions
7. Embracing social support
8. Deepening your spiritual connection
9. Having strong reasons for living

I personally would also include Exercise as a 10th.

Oh Eileen61! As I understand you! Last fall, my neurosurgeon did not dare give me my diagnosis, GBM grade 4. I learned it from another doctor who had my file in hand. I will never forget this November 7, 2018. I was devastated. After that, I spent several weeks feeling like a death row in "the death corridor." It's awful!
I quickly realized that my neurosurgeon had not told me anything because he knew that my diagnosis was not clear. Neuro-oncology is an embryonic science. It's a medicine that does not know much. The neurosurgeon who is following me now is reputed to be one of the best in Canada where I live, and even he often tells me that he does not know what is happening with my tumor. He is searching. It is terrible for the sick people who can not be treated, but at the same time, this bad knowledge is like a breach that gives way to hope. Some people survive. There are so many unknowns. Why would not be myself an exception? According to my readings on the Internet, I should have died in spring 2019. But I'm still there, and rather in good condition! Why would not you be an exception? One of those people who will have the chance to grow old?

The letter M of the GBM means Multiform. Each GBM is unique and even cancer cells in the tumor may be different from each other. It is a tumor that can take many forms. You are at the beginning of a long battle but maybe it will not be as difficult as you imagine now. No one knows the future. Perhaps the care that will be offered to you will not diminish you as much as you can anticipate. Request multiple opinions.

A familly doctor, new friend who has a GBM like us, talked to me about a very good book: Radical Remission of Kelly A Turner. She met cancer survivors and became interested in the commonalities they had. She has selected 9 points in common. I am reading it now. It helps me. It could also help you.

There are things you can do to build strength. You can do the ketogenic diet, take DCA and EGCG supplements, do yoga and meditation ... You have to breathe and rejoice to be always there, even in panic, it’s a proof that you are alive! Your pain touches me so much. Above all, do not be embarrassed to go for help. There are readings, like Irvin Yalom's, Staring at the Sun, which helps to get your head out of the water, to breathe.

No one knows the future. Not even the doctors, specially concerning brain tumor. We have unsuspected strengths in us that can help heal. I'm confident that you'll get by, that you still have good years to live. Breathe.
Kisses.
Catherine marcyprof