High grade Glioma - What questions should I ask?

Posted by eileen61 @eileen61, Aug 16, 2019

Thanks to the wonderful patient portal, I now know that my brain biopsy is positive for a high grade glioma. Unfortunately I haven’t been officially told by my team yet. Needless to say, I’m totally panicking. I need to ask questions, but I don’t even know what to ask at this point. Anyone out there that can help a newbie out?

@dianeem

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.

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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!

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@becsbuddy

@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.

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Keeping a log is a great idea and good tool! Got mine ready to go! I'm sorry you didn't resume your "old/pre" life but I appreciate the help you offer here in your current life! Thank you!

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@becsbuddy

@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.

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@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!

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@eileen61

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!

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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.

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@becsbuddy

@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!

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Totally understand! I get it!

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@dianeem

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.

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Just ordered Dr. Turner's book, will look for this next one too! I'm a big researcher, so having things I can turn too is very helpful. When my dogs were diagnosed with diabetes, I read more than most vets and the knowledge helped me provide them a better quality of life for many years longer than expected. Why couldn't I do the same with my own care? Thanks again!

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@marcyprof

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

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Love this! Thank you so much!!

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My husband was just diagnosed after his 61st birthday with a brain tumor and after a 12 hour surgery in April of 2019 it was found to be GBM too. He's done six weeks of radiation and chemo pills and just had a follow-up MRI which looked very good! No sign of any new growth and the part of the tumor that couldn't be removed is not growing either. We know that it typically grows back in 6 to 12 months, but we were just so thankful for a positive check-up. He's been feeling well and seems almost as healthy as before all of this. Tonight he's starting the first of possibly 6 more rounds of chemo pills.
Prayers for all!!!!

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Awesome news for you both! I'm not surgery is an option for me but that's good to hear he's doing well. I'm not looking forward to staying in the Mayo (Phoenix) area for six weeks, but at least it'll be a bit cooler in September, I hope. Just need to figure out the logistics of lodging and transportation. How was your husband during his treatment? Was he able to be independent? I'm probably putting the cart before the horse at this time, but I'd like to know what's realistically possible. I'm hoping my husband can remain in NM and work during the week and maybe visit, or perhaps our daughters who live in Tucson can visit, on the weekends. Too many thoughts running thru the brain. Thanks so much for the support!

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@colleenyoung

@marcyprof, what a marvellous response to Eileen.

@eileen61, you were are to disconnect from the Internet when the information is no longer helpful and sends you into an overwhelming spin. However, I'm relieved that you've returned to tell us how you are doing. I know what you mean that working in healthcare can give a base knowledge that can be both comforting and troubling.

Dismaying that you are having to deal with such a reaction from your employer when they should know better to give you time to digest the diagnosis before thinking about practice logistics. I suppose this is their fear coming through, that they will have to manage during your medical absences. They will manage. I'd like to bring in @becsbuddy and @kristennursepatient who have had to navigate these employment waters. They may have some thoughts.

A journal is a great idea. It sounds like staying organized helps you. That's what I need to do to in times of stress.

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@eileen61 I am sorry that your employer is being difficult so soon. I am afraid that I am not much help though. My employers worked with me and I am easily replaced as FMLAs were priority for the float/resource nurses to cover. I did not do much research on the internet because I see on an almost daily basis how misleading it can be. My family/friends were asking when I was first diagnosed so I did go onto the American Cancer Society website to see what treatment options would be, but this still was not enough to know what the plan would be. I took everything one day at a time. Do what you can today to prepare for what may happen tomorrow. I totally understand how it makes you feel out of control. I hope that your treatment goes well and is successful. Please keep us up to date.

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Thanks, I'm doing just that. One day as it comes, hopefully I'll have more concrete information and plans after we meet with everyone on Friday.

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@eileen61

Awesome news for you both! I'm not surgery is an option for me but that's good to hear he's doing well. I'm not looking forward to staying in the Mayo (Phoenix) area for six weeks, but at least it'll be a bit cooler in September, I hope. Just need to figure out the logistics of lodging and transportation. How was your husband during his treatment? Was he able to be independent? I'm probably putting the cart before the horse at this time, but I'd like to know what's realistically possible. I'm hoping my husband can remain in NM and work during the week and maybe visit, or perhaps our daughters who live in Tucson can visit, on the weekends. Too many thoughts running thru the brain. Thanks so much for the support!

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He had a grand mal seizure back on January 1st and that is what took us to Mayo clinic in Rochester for testing. Since then he has not been able to drive otherwise he's been very independent. The brain surgery to remove as much of the tumor in his right front lobe was very scary, but he recovered from that in a few weeks and then started daily radiation and chemo pills. We are blessed that we only live an hour from Rochester, Minnesota. During those treatments he only had one bad day if vomiting. And he became more tired as his platelets went down, but was still fairly active most days. Sending you our best wishes and many prayers 🙏

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