High grade Glioma - What questions should I ask?

Posted by eileen61 @eileen61, Fri, Aug 16 10:40pm

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?

First of all. Don’t panic. Easier said than done. But what you can do is take into account of how you are feeling, physically and emotionally. Take into account of yourself as I have found we can get lost in the diagnosis and treatments. Affirmation of who you are, I found, was critical for me, you are not just a case to be studied.
Pay attention to your senses and capabilities as these can be affected by the changes in your brain.

If you wish, you can read journals although I suggest joining a support group for moral support as well as access to information, check out MassKickers via Facebook for starters, we have a great team of brain tumour thrivers on there.

Keep a journal of your thoughts, emotions, symptoms. It is helpful to sort out the things going on in and around you. And don’t stop enjoying life. Remember to treat your spirit as much as your body. A positive mind can do wonders for the brain.

I found painting and wood work to be very therapeutic.

REPLY

Hello @eileen61 I'm sorry to read of your diagnosis. I'm Scott and my wife fought her brain cancer for over 14 years with me as her caregiver. My wife had the same diagnosis and the times of 'waiting' were often worse than those when we were actively able to act and react. Those in-between times were always brutal.

I fully know every tumor is different and every patient is unique, so all I can offer (especially since I am not any kind of medical professional) are our experiences.

My wife always had me take notes of the conversations she had with her neuro-oncology doctors (at Mayo Rochester) so we didn't miss things as she was thinking about her next question or as the details and unknown terms began flowing. We also immediately signed HIPPA forms so the doctors had her approval to speak directly with our adult children so they could get the information straight from the source. This helped us immensely as I was not having to always be the information hub and they got exactly the same info we did, so they knew it was being sugar coated, items ignored, etc. by Mom or Dad. We also took care of all our advance directives, POA, estate plans, wills, etc. We saw this as the first block in what we viewed as the foundation of a fortress we would build for her from which she could fight her war.

Again, in my wife's case, she made the immediate decision her treatment goal was always going to be to achieve the best quality of life over quantity of life. This was the most important foundational piece for her. She never waivered from this goal.

Her most significant early questions were treatment options. She asked what every option was that the doctors could think of as treatment alternatives. We wanted to know them all. She also made sure to ask the potential adverse outcomes — even if in the tiniest percentages of possibilities. We also made two early agreements between ourselves that formed two more of our foundation blocks: First was that we would use the doctors as the experts they were and rely on their knowledge and experience and therefore give their advice the weight it deserved. Second was that we would use each other as deciding counsel as we made treatment decisions. Once more people learned of my wife's diagnosis more and more of them felt 'obligated' to offer their advice on what they believed we should be doing when it came to her treatment decisions. Often, this really didn't help.

She also asked a lot of questions about how the Mayo doctors would interface with her GP in the future since we lived many states away.

She also asked detailed questions regarding each med she was prescribed. An early purchase was a drug dictionary to have on hand.

My wife said something very sage to me in the first week of her illness. At the time I did not fully recognize its value, however I did as time went on. She said "Scott, I'm the one fighting this war. It is MY war. I will fight it how I want, as I want, with the weapons I want, and in the manner I want. I need you to agree with this. Do you?" This became another of our critical foundational blocks upon which we built her fight. She did it HER way! This helped me be able to stand aside and let her have her emotions as SHE felt them at the time.

My acceptance of the fact she was the one fighting made it far easier for me to understand and adhere to each of her decisions. I would joke with her that she was the army and I was just her quartermaster making sure she had what she needed and wanted. I provided support and for the longest time I was not the decision maker. Once that changed then I was lucky to have her words to guide me along, knowing it was as she wished.

I am sorry this went on and one….I'm sure I missed some of your important questions and concerns. What other questions do you have?

I wish you stength, courage, and peace at this most challenging time.

REPLY

Hi @eileen61, I'm so relieved that you found this online support group, Connect, after reading the results of your biopsy. This must have been a very worrying weekend for you. Thankfully @kristin1990 and @IndianaScott were there to virtually be by your side and offer fantastic first-hand experiences and advice. I'd like to also bring @marcyprof @nursnis and @donnamar into this discussion as they too have recently been in your shoes with a new diagnosis and wondering what questions to ask.

When you meet with your team, you'll certainly want to find out more and ask "now what?" Things like:
– How aggressive is my tumor?
– What are the treatments options?
– Are there clinical trials I should consider?

When is your next appointment to discuss the results of the biopsy?

REPLY

Thank you for your reply. I basically disconnected from the internet this weekend, as searching for info was making me quite panicky. My next scheduled appointment is Aug 27 with the surgeon. The neuro oncologist is wanting to see me sooner, so I'm waiting to coordinate the necessary appointments needed. I live 7 hours by car away from Phoenix, so it's not like I can just drop by at a moment's notice. Plus my husband needs to coordinate time off of work. It's very much a challenge to know what happens next. We both work in healthcare, so my knowledge base is probably more than the typical patient, but that's not always a good thing. I personally know no one who has dealt with brain cancer. Everyone knows someone with breast cancer, and my husband is a two time cancer survivor ( Hodgkin's and renal ca). I'm hoping to hear from my care team today with dates. In the meantime, I'm dealing with trouble from my employer (yes, a doctor's office) who is making noises that they need to replace me, as I'm the only one who does what I do and brings in a great portion of the revenue. I don't want to get fired, mainly because I can't lose my health insurance… It's enough stress dealing with the diagnosis, yet alone this external stuff.

REPLY
@kristin1990

First of all. Don’t panic. Easier said than done. But what you can do is take into account of how you are feeling, physically and emotionally. Take into account of yourself as I have found we can get lost in the diagnosis and treatments. Affirmation of who you are, I found, was critical for me, you are not just a case to be studied.
Pay attention to your senses and capabilities as these can be affected by the changes in your brain.

If you wish, you can read journals although I suggest joining a support group for moral support as well as access to information, check out MassKickers via Facebook for starters, we have a great team of brain tumour thrivers on there.

Keep a journal of your thoughts, emotions, symptoms. It is helpful to sort out the things going on in and around you. And don’t stop enjoying life. Remember to treat your spirit as much as your body. A positive mind can do wonders for the brain.

I found painting and wood work to be very therapeutic.

Jump to this post

Thank you so kindly for your reply! I'll check out the group you mentioned. I've already decided a journal will help keep my thoughts straight too! Appreciate the suggestions!

REPLY
@IndianaScott

Hello @eileen61 I'm sorry to read of your diagnosis. I'm Scott and my wife fought her brain cancer for over 14 years with me as her caregiver. My wife had the same diagnosis and the times of 'waiting' were often worse than those when we were actively able to act and react. Those in-between times were always brutal.

I fully know every tumor is different and every patient is unique, so all I can offer (especially since I am not any kind of medical professional) are our experiences.

My wife always had me take notes of the conversations she had with her neuro-oncology doctors (at Mayo Rochester) so we didn't miss things as she was thinking about her next question or as the details and unknown terms began flowing. We also immediately signed HIPPA forms so the doctors had her approval to speak directly with our adult children so they could get the information straight from the source. This helped us immensely as I was not having to always be the information hub and they got exactly the same info we did, so they knew it was being sugar coated, items ignored, etc. by Mom or Dad. We also took care of all our advance directives, POA, estate plans, wills, etc. We saw this as the first block in what we viewed as the foundation of a fortress we would build for her from which she could fight her war.

Again, in my wife's case, she made the immediate decision her treatment goal was always going to be to achieve the best quality of life over quantity of life. This was the most important foundational piece for her. She never waivered from this goal.

Her most significant early questions were treatment options. She asked what every option was that the doctors could think of as treatment alternatives. We wanted to know them all. She also made sure to ask the potential adverse outcomes — even if in the tiniest percentages of possibilities. We also made two early agreements between ourselves that formed two more of our foundation blocks: First was that we would use the doctors as the experts they were and rely on their knowledge and experience and therefore give their advice the weight it deserved. Second was that we would use each other as deciding counsel as we made treatment decisions. Once more people learned of my wife's diagnosis more and more of them felt 'obligated' to offer their advice on what they believed we should be doing when it came to her treatment decisions. Often, this really didn't help.

She also asked a lot of questions about how the Mayo doctors would interface with her GP in the future since we lived many states away.

She also asked detailed questions regarding each med she was prescribed. An early purchase was a drug dictionary to have on hand.

My wife said something very sage to me in the first week of her illness. At the time I did not fully recognize its value, however I did as time went on. She said "Scott, I'm the one fighting this war. It is MY war. I will fight it how I want, as I want, with the weapons I want, and in the manner I want. I need you to agree with this. Do you?" This became another of our critical foundational blocks upon which we built her fight. She did it HER way! This helped me be able to stand aside and let her have her emotions as SHE felt them at the time.

My acceptance of the fact she was the one fighting made it far easier for me to understand and adhere to each of her decisions. I would joke with her that she was the army and I was just her quartermaster making sure she had what she needed and wanted. I provided support and for the longest time I was not the decision maker. Once that changed then I was lucky to have her words to guide me along, knowing it was as she wished.

I am sorry this went on and one….I'm sure I missed some of your important questions and concerns. What other questions do you have?

I wish you stength, courage, and peace at this most challenging time.

Jump to this post

Thanks so much for your response! I appreciate your sharing your journey thru your wife's illness, and I'm sorry for your loss. I'm hoping to be a little more focused today and start digging thru the pile of paperwork needed to organize the financial aspects of what's been done, while waiting for appointments to be set up. I don't like being out of control and this is out of my comfort zone.

REPLY

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

REPLY
@eileen61

Thank you for your reply. I basically disconnected from the internet this weekend, as searching for info was making me quite panicky. My next scheduled appointment is Aug 27 with the surgeon. The neuro oncologist is wanting to see me sooner, so I'm waiting to coordinate the necessary appointments needed. I live 7 hours by car away from Phoenix, so it's not like I can just drop by at a moment's notice. Plus my husband needs to coordinate time off of work. It's very much a challenge to know what happens next. We both work in healthcare, so my knowledge base is probably more than the typical patient, but that's not always a good thing. I personally know no one who has dealt with brain cancer. Everyone knows someone with breast cancer, and my husband is a two time cancer survivor ( Hodgkin's and renal ca). I'm hoping to hear from my care team today with dates. In the meantime, I'm dealing with trouble from my employer (yes, a doctor's office) who is making noises that they need to replace me, as I'm the only one who does what I do and brings in a great portion of the revenue. I don't want to get fired, mainly because I can't lose my health insurance… It's enough stress dealing with the diagnosis, yet alone this external stuff.

Jump to this post

@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.

REPLY
@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

Jump to this post

Wow, what a ray of sunshine your response was to me, especially on a rare cloudy day in NM. It's funny, everyone keeps asking me how I feel. I feel "fine". It's weird. I actually have appointments confirmed for this Friday 23 Aug with the neuro-oncologist, neuroradiologist, and neurosurgeon to get to the specifics of what going on and what the plans are for the treatment. A friend cried today when she saw me today…I realized I haven't really cried yet. She asked me how I could still be functional and my usual sarcastic self. I told her I didn't really have a choice but to just be me.

REPLY
@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.

Jump to this post

Thank you! I'd love to hear from others that are farther along the creek than I am. I feel like I'm in my canoe, but haven't been given the paddles yet.

REPLY
@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

Jump to this post

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.

REPLY

@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.

Liked by eileen61

REPLY
@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.

Jump to this post

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!

REPLY
@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.

Jump to this post

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.

Jump to this post

@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!

Liked by eileen61

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