@tuckerp Funny how you mention the GBM site, with only positive comments allowed.
My friend’s son had GBM and was being treated in Houston (not MD Anderson, but the ‘other’ cancer hospital whose name escapes me) by an Asian doctor with a very heavy accent. He was a very clinical type, never joked and rarely smiled.
When my friend’s son asked him what the next steps would be after radiation, he looked at him and said ‘You be dead in 14 months no matter what you do’…
The kid was stunned but immediately went to the chief of radiology and fired the doctor over the comment. He was quickly reassigned another clinician.
Don’t know what happened to the first doc, but c’mon man, give your patients HOPE at the very least!! Perhaps some comments on the forum come off that way to some individuals - a hard truth they simply cannot accept?? My friend’s son certainly couldn’t accept it and he fought like hell; he lasted 18 months - 4 months more than predicted.
Don’t know if this was a pyrrhic victory for him because those 4 extra months were the absolute worst…
Phil
@heavyphil yes ironic. Thanks for the story. We found out thru an MRI at Banner hospital in Mesa Arizona. Jan 4th 2021. Right during COVID. We were assigned the only neuro surgeon. An Asian lady ex military. Very straight forward but quite good. Surgery was as soon as we could get a bed. No visitors. We were then assigned an oncologist. He told us after surgery results were back that we had 8-12months . Dont do anything else just go live life. We immediately switched to Barrows IVY center. New brain tumor center in Phoenix. We had the best. She lived about 1 years with some quality. Two more years of pure torture. Died Nov 10, 2024. Barrows always pushed to try the next thing. Never saying we dont have a chance. But we never had a chance. They took that tumor out and had the DNA results everyone knew but me.
This forum is for people with prostate cancer or their caregivers. When you have cancer, people love to give you advice like “sugar feeds cancer, so stop sugar and your cancer will go away” or “don’t worry, most people die with prostate cancer, not of it” etc. These are not based on facts or are facts out of context. I think the advice on this forum should be considered food further research or something to talk to your doctor about. Since we and our cancers are all unique, advice from a non-oncologist who hasn’t examined you is maybe good general information, but cannot be a substitute for medical advice, even if the writer is a doctor. Do what your oncologist tells you to do. If you don’t trust him/her, find one you do trust. Generalized advice and research can help you know what to ask your oncologist.
Something I learned in a 12 step program has proved to be a great help in other areas. It's an unwritten rule - we don't tell others what to do , we tell others what WE did. Advice tends to be more welcome when it's framed that way. As opposed to someone coming to your house and forcing it on you. Example- I did some some research and determined that a plant based diet was the best way for me to go to help prevent cancer and heart disease. And I also use Joe Dispenza meditation techniques. I 'm not telling YOU , that YOU need to do this, I'm just saying that's what * I * did. If you want to know more, I''d be happy to share or you could look into it yourself.
@bens1 I think your exactly right. I like all the comments. I appreciate everyone's input. But as you say, it inspires me to go dig deeper. I also make a list of all my concerns and questions and take that to my Dr visit. I am not holding anyone accountable on this site. I just like the straight up responses. My wife's cancer Facebook page wanted positive information only. I didn't find anyone coming on the site with a wish to degrade anyone. But it was all feel good stuff. Someone would come on and ask how everyone slept. ?? I think an extra button like "not helpful" might flag those for the moderator to review.
@tuckerp I'm sorry for everything the two of you went through. Some cancers genuinely are like that.
The challenge for ours is that treatments have changed so fast that no one's quite sure what our prognosis is any more: some, like my initial medical team, err on the side of avoiding false hope, and give too negative an outlook (I believed in 2021 that I might not even be alive by 2026, and my family and I had to deal with processing that). Other oncologists believe we've reached a point where oligometastatic prostate cancer might even be "curable" (really, long-term remission), while polymetastatic prostate cancer might be manageable indefinitely as new treatments keep emerging.
So unlike some other types of advanced cancer, we do genuinely have hope now, but not certainty (or even clarity). Advanced prostate cancer treatment is crossing a threshold: some oncologists and urologists are hesitating until they can be sure the new treatment practices aren't just a flash in the pan and give give durable results, while others are leaping through with both feet into a future that's still hazy.
Colleen Young, Connect Director | @colleenyoung | 5 days ago
I appreciate the feedback from everyone. It is our objective to create this space where people can share experiences and evidence-based information as well as give and get support.
The experiences of other patients and their caregivers remain invaluable. There are many decisions and challenges on the bumpy road that is the prostate cancer journey. No two people's experiences are the same, but we can learn from each other.
No one here is the expert in all things prostate cancer. They only have their experience to share.
That said sometimes members will share helpful resources or information outside of their own personal experience. If you do so, please include links to source of the information.
EXCERPT from the Guidelines
Mayo Clinic provides high quality, expertly developed health information. Visit https://www.mayoclinic.org/
Medical tips or information may be removed if a member:
- Tells another member what to do.
- Attempts to provide a diagnosis for another member.
- Makes a medical statement that cannot be verified clearly as coming from their own personal experience.
- States information as fact or makes a claim that is not properly referenced.
- Spreads misinformation about unproven therapies.
- Posts a message that was generated by artificial intelligence (AI) without a disclaimer or personal experience. (See guidance here https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/)
- References information that is not evidence-based and/or does not come from a verified medical expert source.
If you see a post that you think is inappropriate or would like to bring it to the attention of the moderating team, please report it.
How to report:
1. Click the 3 dots (...) in the lower right corner of the comment.
2. Select "Report comment"
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Something I learned in a 12 step program has proved to be a great help in other areas. It's an unwritten rule - we don't tell others what to do , we tell others what WE did. Advice tends to be more welcome when it's framed that way. As opposed to someone coming to your house and forcing it on you. Example- I did some some research and determined that a plant based diet was the best way for me to go to help prevent cancer and heart disease. And I also use Joe Dispenza meditation techniques. I 'm not telling YOU , that YOU need to do this, I'm just saying that's what * I * did. If you want to know more, I''d be happy to share or you could look into it yourself.
@tjv1156
I completely agree. It is why MCC guidelines are to post your personal experience with the subject.
When you move from this is why I did this and why you get into giving medical advice, prognosis, diagnosis, and what treatment another should do. That is not the purpose of MCC.
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@heavyphil yes ironic. Thanks for the story. We found out thru an MRI at Banner hospital in Mesa Arizona. Jan 4th 2021. Right during COVID. We were assigned the only neuro surgeon. An Asian lady ex military. Very straight forward but quite good. Surgery was as soon as we could get a bed. No visitors. We were then assigned an oncologist. He told us after surgery results were back that we had 8-12months . Dont do anything else just go live life. We immediately switched to Barrows IVY center. New brain tumor center in Phoenix. We had the best. She lived about 1 years with some quality. Two more years of pure torture. Died Nov 10, 2024. Barrows always pushed to try the next thing. Never saying we dont have a chance. But we never had a chance. They took that tumor out and had the DNA results everyone knew but me.
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3 Reactions@jimgaudette
Couldn't be said any clearer.
It probably would take me page to write what you wrote so accurately in a paragraph
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1 Reaction@jc76 Thank you
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1 ReactionSomething I learned in a 12 step program has proved to be a great help in other areas. It's an unwritten rule - we don't tell others what to do , we tell others what WE did. Advice tends to be more welcome when it's framed that way. As opposed to someone coming to your house and forcing it on you. Example- I did some some research and determined that a plant based diet was the best way for me to go to help prevent cancer and heart disease. And I also use Joe Dispenza meditation techniques. I 'm not telling YOU , that YOU need to do this, I'm just saying that's what * I * did. If you want to know more, I''d be happy to share or you could look into it yourself.
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13 Reactions@tuckerp I'm sorry for everything the two of you went through. Some cancers genuinely are like that.
The challenge for ours is that treatments have changed so fast that no one's quite sure what our prognosis is any more: some, like my initial medical team, err on the side of avoiding false hope, and give too negative an outlook (I believed in 2021 that I might not even be alive by 2026, and my family and I had to deal with processing that). Other oncologists believe we've reached a point where oligometastatic prostate cancer might even be "curable" (really, long-term remission), while polymetastatic prostate cancer might be manageable indefinitely as new treatments keep emerging.
So unlike some other types of advanced cancer, we do genuinely have hope now, but not certainty (or even clarity). Advanced prostate cancer treatment is crossing a threshold: some oncologists and urologists are hesitating until they can be sure the new treatment practices aren't just a flash in the pan and give give durable results, while others are leaping through with both feet into a future that's still hazy.
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6 ReactionsI appreciate the feedback from everyone. It is our objective to create this space where people can share experiences and evidence-based information as well as give and get support.
I encourage all members to review the guidelines that govern this forum. These rules of conduct help us to keep the forum safe, supportive, inclusive, and respectful.
- Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
The experiences of other patients and their caregivers remain invaluable. There are many decisions and challenges on the bumpy road that is the prostate cancer journey. No two people's experiences are the same, but we can learn from each other.
No one here is the expert in all things prostate cancer. They only have their experience to share.
That said sometimes members will share helpful resources or information outside of their own personal experience. If you do so, please include links to source of the information.
EXCERPT from the Guidelines
Mayo Clinic provides high quality, expertly developed health information. Visit https://www.mayoclinic.org/
Medical tips or information may be removed if a member:
- Tells another member what to do.
- Attempts to provide a diagnosis for another member.
- Makes a medical statement that cannot be verified clearly as coming from their own personal experience.
- States information as fact or makes a claim that is not properly referenced.
- Spreads misinformation about unproven therapies.
- Posts a message that was generated by artificial intelligence (AI) without a disclaimer or personal experience. (See guidance here https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/)
- References information that is not evidence-based and/or does not come from a verified medical expert source.
If you see a post that you think is inappropriate or would like to bring it to the attention of the moderating team, please report it.
How to report:
1. Click the 3 dots (...) in the lower right corner of the comment.
2. Select "Report comment"
3. Write the reason for the report and SUBMIT.
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9 Reactions@tjv1156
I completely agree. It is why MCC guidelines are to post your personal experience with the subject.
When you move from this is why I did this and why you get into giving medical advice, prognosis, diagnosis, and what treatment another should do. That is not the purpose of MCC.
Good post @tjv1156
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