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andrew_dublin
@andrew_dublin

Posts: 2
Joined: Sep 17, 2018

Looking for resources for friend with brain tumor

Posted by @andrew_dublin, Mon, Sep 17 10:45am

Hi all, Apologies if this is not the right place to post this, if there is a different forum that would be more suitable please let me know! In brief, I have a friend who has had a brain tumor diagnosis, I don't have any more specifics as yet except "it doesn't look good". As we are in Ireland I'm just trying to find out what the possibilities are for resources in the US where we might be able to get better information… I know the reputation of the Mayo Clinic as providing in some cases free care for interesting cases. I'm thinking that it might be of benefit to try to get an appointment there just to get some more insight into what other options might be for people from outside the US without US insurance and probably not much money. I would really appreciate any thoughts from anyone as to where to look or who to speak to to get more info?

REPLY

Hello @andrew_dublin While I am very sorry to read of your friend's diagnosis, it is nice to e-meet you here on Mayo Connect. Unfortunately, any diagnosis of 'brain cancer' is never good news, there are so many new discoveries, new treatments, etc. that there can be wonderful hope! My wife was diagnosed with brain cancer and received her neuro-oncology care at Mayo Clinic (Rochester, MN campus) for all 14 years of her journey with this disease. .

I cannot speak to the availability of charity care from Mayo, but I do know they have a Cancer Education Center and they have many resources! You can learn more about it at this link https://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education Also they have a Patient Education Center, which also has some excellent resources. You can learn more about it here: https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota

It will be important for your friend to learn about what specific form of brain cancer they have since much of the educational materials are focused on the various types of brain cancer. Early in my wife's journey I found some good resources at the American Brain Tumor Association. you can access much of their information online at https://www.abta.org.

I wish you both the best of everything and look forward to hearing from you again as you gain more specifics so folks here can offer more assistance and ideas!

Strength, courage, and peace!

Hi Scott- I was just wondering if you knew others in this group who have Ogliodendrogliomas? I feel as time goes I have more ante questions and would love to connect with someone who could understand. Thanks !

@user_chea8a92a

Hi Scott- I was just wondering if you knew others in this group who have Ogliodendrogliomas? I feel as time goes I have more ante questions and would love to connect with someone who could understand. Thanks !

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Hello @user_chea8a92a My wife's initial diagnosis was an oligodendroglioma. While I did not have this, I did learn about it as her primary caregiver, advocate, medical guardian, and, of course, concerned spouse. I am sure there are others here who have this diagnosis and can respond as well.

Please feel free to ask me anything! If you are not comfortable with any questions on this public forum, feel free to message me directly, which you can do by clicking on my name and then using the message function there.

I look forward to providing what information I can.

Strength, courage, and peace!

@IndianaScott

Hello @andrew_dublin While I am very sorry to read of your friend's diagnosis, it is nice to e-meet you here on Mayo Connect. Unfortunately, any diagnosis of 'brain cancer' is never good news, there are so many new discoveries, new treatments, etc. that there can be wonderful hope! My wife was diagnosed with brain cancer and received her neuro-oncology care at Mayo Clinic (Rochester, MN campus) for all 14 years of her journey with this disease. .

I cannot speak to the availability of charity care from Mayo, but I do know they have a Cancer Education Center and they have many resources! You can learn more about it at this link https://www.mayoclinic.org/patient-visitor-guide/education-centers/cancer-education Also they have a Patient Education Center, which also has some excellent resources. You can learn more about it here: https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota

It will be important for your friend to learn about what specific form of brain cancer they have since much of the educational materials are focused on the various types of brain cancer. Early in my wife's journey I found some good resources at the American Brain Tumor Association. you can access much of their information online at https://www.abta.org.

I wish you both the best of everything and look forward to hearing from you again as you gain more specifics so folks here can offer more assistance and ideas!

Strength, courage, and peace!

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Thank you so much for your reply Scott. She's not a close friend, she is another parent in my child's elementary school, but I am just interested in finding out whatever I can that might be of help. She's very young (40) with two young kids. As an American living in Ireland, I guess I'm a little worried about the quality of care here – I believe it is very good, but at the same time, I just wonder if there might be better access to experimental treatments or whether there are cases here where they would decide surgery isn't possible that American surgeons might be willing to take on, that kind of thing. Anyhow, really appreciate your taking the time to answer and I will probably post again when I find out more specifics! I'm thinking that if there is any chance there is benefit to having a consultation with someone in the Mayo Clinic maybe we could make that happen.

@andrew_dublin

Thank you so much for your reply Scott. She's not a close friend, she is another parent in my child's elementary school, but I am just interested in finding out whatever I can that might be of help. She's very young (40) with two young kids. As an American living in Ireland, I guess I'm a little worried about the quality of care here – I believe it is very good, but at the same time, I just wonder if there might be better access to experimental treatments or whether there are cases here where they would decide surgery isn't possible that American surgeons might be willing to take on, that kind of thing. Anyhow, really appreciate your taking the time to answer and I will probably post again when I find out more specifics! I'm thinking that if there is any chance there is benefit to having a consultation with someone in the Mayo Clinic maybe we could make that happen.

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Hello @andrew_dublin My wife was diagnosed in her 40s as well, but out two children were in University by then.

I don't know anything about the quality of care in Ireland, but I can say we picked Mayo for my wife's care (she was initially diagnosed in Chicago) because they see the oddest of the odd, the rarest more often than most, and do more of the newest treatments than other places. In my wife's case she needed something at that time called a stereotactic biopsy and the surgeon at Mayo had done hundreds of them and was rated the world's best, while the surgeons in Chicago had only heard of the procedure. They also have remarkable teaching and research going on all the time — and it's always running in high gear!

I wish your friend all the best. If she ever needs any moral support, information, a place to ask questions, or just vent from afar, be sure to let her know about Connect. It is an awesome and supportive community!

Strength, courage, and peace to you both!

I am sorry to hear about your friend’s diagnosis. I have a friend with the same diagnosis. Here are some best places in the US for brain tumors- Sloan Kettering, Mayo, Duke University and MD Anderson.

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