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nozland
@nozland

Posts: 4
Joined: Feb 09, 2019

Waiting for pathology results from second brain tumor. Really nervous

Posted by @nozland, Mon, Feb 18 10:17pm

I had a second brain tumor removed in my right frontal lobe. It grew back in a month and a half. I met with the may neuro team and radiation docs. They didn't have the pathology back. They say it looks like glioma. They are ruling out things in the staining they are doing. So, I wait. The docs couldn't give me answers last week. The radiation doc talked hypothetically about treatment.

My question is — can you live if you have brain cancer? I have known three people that have had brain cancer. They are not here anymore. So, I really am not sure if going through treatment will give me quality of life. I am not sure I want to go through radiation and fight through the side effects.

I went through chemo last year then had an amputation. I am RBKA. I didn't have quality of life as I fought through to save my leg. I can't imagine what radiation will do to my brain. It has been a long year.

REPLY

@nozland, radiation might be helpful and not hurtful to your brain. I had 10 whole brain radiation treatments about 2 months ago, and haven't noticed many side effects, except losing some of my hair. I'll have a brain MRI in March to see what good the radiation did. My main thoughts are trusting God and not worrying about what I don't know. You've already gone through a lot. It's worth asking deep questions, and seeking people to give you hope. We should all (with cancer and not) get our spiritual and other things in order. I still need to do paperwork for final things. I hope you'll get great responses here, and from your medical staff. Blessings:)

Hello @nozland I am sorry to read of your difficult health journey! I agree it sounds as if you have had a very long year!

It looks like this might be your first post so I would like to say welcome to Mayo Connect. I am Scott and my wife had a brain tumor, which was in her right frontal cortex. She had surgery on her tumor, but did not have radiation or chemo.

Let me say the one thing I learned from her years as a patient of the neuro-oncology group at Mayo Rochester was that every patient, their tumors, cancer, and brains are individual and different. No one seems to follow the same path in their situation as anyone else does or has. For instance my wife was left-handed so that was an aspect that complicated things in her case.

She was diagnosed back in 2002 so the medicine, therapies, knowledge, etc. on brain tumors has changed signifiantly since then. Again, each person's journey in this is different, but the mantra my wife followed was always based on what might give her the best quality of life, rather than quantity. She lived for 14 years from the time of her diagnosis, but again every person is different. She was 49.

I am more than willing to answer any questions you might have. Again, my experience is as her caregiver.

Strength, courage, and peace

Liked by marcyprof

@wendeth

@nozland, radiation might be helpful and not hurtful to your brain. I had 10 whole brain radiation treatments about 2 months ago, and haven't noticed many side effects, except losing some of my hair. I'll have a brain MRI in March to see what good the radiation did. My main thoughts are trusting God and not worrying about what I don't know. You've already gone through a lot. It's worth asking deep questions, and seeking people to give you hope. We should all (with cancer and not) get our spiritual and other things in order. I still need to do paperwork for final things. I hope you'll get great responses here, and from your medical staff. Blessings:)

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Hi @wendeth I agree with your statement about all of us having the need to get our paperwork, etc. in order! As difficult as some of the discussions on this were with my wife, when she was fighting her cancer war it made a difference. First thing was she signed the necessary HIPPA forms so her doctors could talk about her situation directly with our adult children. That was a huge help for them! Then we also put together our estate plans, wills, advance medical directives, POA (legal and medical), etc. She also explained her final wishes as to her funeral, cremation, giving certain gifts to certain people, even the music at her celebration, and more. When the time came this was a much larger help to us than I had ever anticipated! None of us had to guess as to what she would have wanted.

Liked by wendeth, nozland

@wendeth

@nozland, radiation might be helpful and not hurtful to your brain. I had 10 whole brain radiation treatments about 2 months ago, and haven't noticed many side effects, except losing some of my hair. I'll have a brain MRI in March to see what good the radiation did. My main thoughts are trusting God and not worrying about what I don't know. You've already gone through a lot. It's worth asking deep questions, and seeking people to give you hope. We should all (with cancer and not) get our spiritual and other things in order. I still need to do paperwork for final things. I hope you'll get great responses here, and from your medical staff. Blessings:)

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@wendeth where was your tumor located? I am still waiting to hear the results of the pathology. I will get all the information then make a decision..

@IndianaScott

Hi @wendeth I agree with your statement about all of us having the need to get our paperwork, etc. in order! As difficult as some of the discussions on this were with my wife, when she was fighting her cancer war it made a difference. First thing was she signed the necessary HIPPA forms so her doctors could talk about her situation directly with our adult children. That was a huge help for them! Then we also put together our estate plans, wills, advance medical directives, POA (legal and medical), etc. She also explained her final wishes as to her funeral, cremation, giving certain gifts to certain people, even the music at her celebration, and more. When the time came this was a much larger help to us than I had ever anticipated! None of us had to guess as to what she would have wanted.

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@IndianaScott thank you for sharing your personal story. I still haven't heard any news on the pathology yet My husband and I need to get things in order. He struggles with Parkinson's. I have taken some of the steps you mentioned. It is hard to take it all in.
I am sorry for your loss and appreciate your willingness to reach out to others.

@nozland

@IndianaScott thank you for sharing your personal story. I still haven't heard any news on the pathology yet My husband and I need to get things in order. He struggles with Parkinson's. I have taken some of the steps you mentioned. It is hard to take it all in.
I am sorry for your loss and appreciate your willingness to reach out to others.

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I will continue to hold you in my thoughts @nozland for a good path report! Thanks for the kind words. I view my efforts here as paying forward for all my wife went through — and all I learned from her!

It is natural to feel overwhelmed at times like this in our lives!

Continued strength, courage, and peace!

@nozland

@wendeth where was your tumor located? I am still waiting to hear the results of the pathology. I will get all the information then make a decision..

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Sorry you're still waiting for results, nozland. Waiting can be SO hard! My tumor – actually a 2.5 inch cyst, was in the right front of my brain. Fortunately it was near my skull, so they didn't need to disturb much of my brain to get to it and I recovered quickly. They drained the cyst, and left a few cancer cells that were attached to healthy brain tissue. The radiation was for those cells, plus a new spot near the back of my brain that showed up on a post-op MRI. Due to the size (apparently 2.5" is big) the doctors moved quickly – from initial MRI to surgery, then to radiation. I also learned that pathology reports don't show up on my "mychart" site that I can see other results on. I hope their delay in getting back to you is a positive sign. Whatever the result, there's a lot of great treatments and options. Keep getting more information:) Oh, and of course, sensing and trusting the medical staff too. My radiation oncologist talked me through his thought process which was helpful to hear, and also with the choice of whole brain radiation (which isn't doe much anymore) – I was thinking the same way that he was. More blessings and wisdom to you!

@IndianaScott

Hi @wendeth I agree with your statement about all of us having the need to get our paperwork, etc. in order! As difficult as some of the discussions on this were with my wife, when she was fighting her cancer war it made a difference. First thing was she signed the necessary HIPPA forms so her doctors could talk about her situation directly with our adult children. That was a huge help for them! Then we also put together our estate plans, wills, advance medical directives, POA (legal and medical), etc. She also explained her final wishes as to her funeral, cremation, giving certain gifts to certain people, even the music at her celebration, and more. When the time came this was a much larger help to us than I had ever anticipated! None of us had to guess as to what she would have wanted.

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Hello @IndianaScott ,
thank you for sharing this difficult moment of your life. I have a GBM WHO 4, diagnosed last fall. Statistically, I should be dead right now. The timing of the diagnosis was a real crisis for my family. We all cried a lot. I made all my papers, wills, funerary arrangements, selection of music and photos to make life easier for my husband lover and my adult daughters for whom my situation is so difficult. You touched me by admitting that your wife's actions had relieved you. It was my desire and now that everything is settled, I feel relieved to have taken care of those I love.
I am 53 years old. I do not want to die but I want to be realistic. Luckily, I think the doctors were wrong about me. They are often wrong. Brain cancer is still very poorly understood. I refused treatments that would have diminished me. I only do chemotherapy that I support pretty well. All that to say that you are right, each case is particular. Each person reacts with his story, his needs. There is no rule. It's good to doubt and keep a small glimmer of hope. No one knows the future. Good luck to all, sick and accompanying.

@marcyprof

Hello @IndianaScott ,
thank you for sharing this difficult moment of your life. I have a GBM WHO 4, diagnosed last fall. Statistically, I should be dead right now. The timing of the diagnosis was a real crisis for my family. We all cried a lot. I made all my papers, wills, funerary arrangements, selection of music and photos to make life easier for my husband lover and my adult daughters for whom my situation is so difficult. You touched me by admitting that your wife's actions had relieved you. It was my desire and now that everything is settled, I feel relieved to have taken care of those I love.
I am 53 years old. I do not want to die but I want to be realistic. Luckily, I think the doctors were wrong about me. They are often wrong. Brain cancer is still very poorly understood. I refused treatments that would have diminished me. I only do chemotherapy that I support pretty well. All that to say that you are right, each case is particular. Each person reacts with his story, his needs. There is no rule. It's good to doubt and keep a small glimmer of hope. No one knows the future. Good luck to all, sick and accompanying.

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Good morning @marcyprof I hope your day is a solid one today and the sun shines wherever you are! It always seems to make any day a bit more bearable I think.

Yes, hope is a very good thing! My wife never lost hope during her war. Our definition of what we were hoping for changed as did her condition, but we always hoped! It takes courage to hope and I applaud your courage!

One of my favorite quotes about courage is this: "Courage does not always roar. Some days it is a soft voice at the end of your day whispering "I will try again tomorrow."

Continued strength, courage, and peace to all!

Liked by marcyprof

I'm so grateful for your support. The doc emailed and said I have glioma. There were cancer cells in the pathology . She want to go over the report in person. She knows I live 3.5 hours away💕–so I'm nervous!!! Paralyzed …she wants me to meet again with the radiation specialist. I'm real anxious. Hoping Monday we can get something set up. I'm trying to be a warrior….my energy is real low!

@nozland

I'm so grateful for your support. The doc emailed and said I have glioma. There were cancer cells in the pathology . She want to go over the report in person. She knows I live 3.5 hours away💕–so I'm nervous!!! Paralyzed …she wants me to meet again with the radiation specialist. I'm real anxious. Hoping Monday we can get something set up. I'm trying to be a warrior….my energy is real low!

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Good morning @nozland I am sorry to hear the results of your path report. I know these times of waiting can be excruciating! It’s hard work to stay strong at these times, but know msny out here are sending extra strength!

Strength, courage, and peace ☮️

Liked by marcyprof

@nozland

I'm so grateful for your support. The doc emailed and said I have glioma. There were cancer cells in the pathology . She want to go over the report in person. She knows I live 3.5 hours away💕–so I'm nervous!!! Paralyzed …she wants me to meet again with the radiation specialist. I'm real anxious. Hoping Monday we can get something set up. I'm trying to be a warrior….my energy is real low!

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Hello @nozland ,
You are going through such a difficult and stressful stage. Your concern is legitimate and we understand how much energy the day demands. We went there. Go one step at a time, one hour at a time. Will you be accompanied? These Neuro Appointments are so traumatic that it is good to be able to discuss them later with an ally, a friend or a member of the family. If you want, you can discuss it here. You are in our thoughts.

Hello @nozland,
I am really sorry to hear that you are going through this. You have already been through so much. A year ago I was diagnosed with a grade 4 Glioma….aka Glioblastoma. I did the standard of care which includes concurrent Temodar/Radiation along with 6 months of additional temodar. I know that every person's experience is different when it comes to how they handle treatment, but I would like to at least possibly give you some inspiration.

I did not have any side effects from the radiation or the chemo. There are long term survivors out there. I have found them. Every case is different and there are so many variables with each case, but I would never turn down the treatment you are talking about due to fear of the side effects. Many people tolerate it pretty well. In my case, after I completed treatment I couldn't believe how much I worried about it up front only to have no side effects whatsoever from the treatment.

I would definitely talk to your doctors and try to ask very specific questions as to your concerns. I suspect they will tell you that it is pretty well tolerated overall. Age and health seem to be the biggest factors. From what I recall, they told me that elderly people tend to have more side effects than younger patients.

Good luck with your decision and your current battle. I wish you all the best!

Hi @nozland, I wanted to check in and see how you're doing. And to let you know that we're here should you have any questions or just want to talk.

@michaeljh, welcome to Connect!

Hang in there! Hugs!

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