← Return to Brain cancer: Oligodendroglioma

robinjenkins70 (@robinjenkins70)

Brain cancer: Oligodendroglioma

Brain Tumor | Last Active: Nov 12, 2020 | Replies (34)

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Hello. My wife was diagnosed with Oligodendroglioma. I was her primary caregiver for the 14 years she fought her disease. I have one suggestion, based on our personal experiences. While there is much talk about ‘patient centered care’, we found few in the medical community who actually practiced this type of care. Brain cancer and its effects are highly individualized, therefore your care needs to be highly individualized as well. I am not shilling for Mayo, but I will say, other than when my wife was in home hospice care, the ONLY true patient centered care she received was from her neuro-oncologist at Mayo. We could not have made it through our journey without him and his team. Best of luck on your follow up at Duke.

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Replies to "Hello. My wife was diagnosed with Oligodendroglioma. I was her primary caregiver for the 14 years..."

Hi thanks for responding! I am sore for the loss of your wife! I am currently doing well but I always fear the worse! My tumor is on my right frontal lobe and is wrapped around my motor skill area – surgery was too much of a risk! After my biosopy my pathology showed the tumor would respond to chemo and radiation was not needed!i have no deficits I have been off chemo for over a year!My tumor has shrunk I half! However I have more anxiety now just wondering what to expect! Will I know if it’s acting up? What is my life expectancy? Will my quality of life change etc! No one can give you definite answers regarding this tumor which is hard because I like facts! I enjoy everyday to the fullest and experience all I can but I always have that fear and in your!

Good morning @user_chea8a92a This is Scott here again. Thank you for your kind words! My wife’s tumor was in her right frontal cortex. Her situation was complicated by the fact she was left-handed so her brain areas were flip-flopped. She had a stereotactic biopsy, which led to bleeding and hence her emergency craniotomy. For many, many years her tumor remained little changed and throughout her years she always made her medical choices based on her view of quality of life over quantity. We learned very quickly that brain cancer is unique to each individual. Actions, reactions, changes, etc. are highly individualized and variable

Her doctors could only offer us advice on what had occurred with other patients as to longevity. There was simply no way for them to be certain, especially given the unknown impacts of her bleed into the tumor area.

My wife also had to deal with the anxiety and unknowns of this disease. It was always the periods of higher ‘unknowns’ (waiting for results, waiting to see if a new drug regimen would be effective, etc.) that caused her fear and anxiety to raise up, so I think that is a very normal reaction to this disease.

I hope my ramblings help a bit.

Peace & Strength

Thank you so much- I am 56 years old -I work,drive and have no deficits! However 3 years ago I had breast cancer which never left my breast – I had a lumpectomy and radiation- then 15 mos later the brain tumor! Both are primary tumors! I go to Yale hospital one of the best! However I just seem to worry about the other foot dropping! My tumor is low grade and non aggressive so the plan is Mri’s now every 41/2 MO’s and if any Trouble back on chemo for a year! Did you wife have a good 14 years and do you think these are normal concerns? I have immense faith and try to out I like in Gods hands but sometimes I feel overwhelmed and very scared and even mad!

Hello @user_chea8a92a,

I’d also like to extend my welcome, and thank you for sharing your history in this group. I cannot begin to imagine the emotions that probably overwhelm you, and yet, I admire the strength and determination your messages reflect!

I found this informative journal article online, about Primary Brain Tumors in Adults, that you may wish to view:

Hi @user_chea8a92a I well recall those years of MRIs every 3 months, then rejoicing when it went to 6 and then finally a year.

I think your thoughts are very normal! My wife’s tumor and health were always with, and on, my wife’s mind. It was her constant companion — but she tried very determinedly to not allow it a front row seat in her daily life. It didn’t always work, but it was her motivator.

Many well meaning, but misdirected, folks would say to her ‘just don’t think about it’, but it is impossible not to when you have a tumor in your brain. So worry and anxiety is a constant companion. Like it or not — unfortunately!

Being scared is also very usual and cannot be dismissed just by wishing it away — so don’t be hard on yourself.

My wife’s quality of life was a unique issue, primarily as a result of her emergency craniotomy. Immediately after she was in a coma and then when she awoke was paralyzed and could not walk, talk, eat, drink, etc. Over 18 months of intensive PT and OT she taught herself to do all those things — with the exception of math. While her personality was altered, it did not change, rather her customary styles were more highly evident. As I said for almost 12 1/2 of those years she was as good as could be expected. The last 1 1/2 she was in home hospice. Each in their own way offered her the best quality of life she could have hoped for!

Peace & Strength

Hi thank you the article was very informative! Do you have this same tumor?

Hi @user_chea8a92a,

You’re very welcome! I do not have this, but I’m one of the moderators for Connect, and I’m glad to see that you’ve connected with Scott.
While we wait for others to join in, you may also be interested in going through these past discussion; feel free to tag members, and share your insights:

Glioma tumor: http://mayocl.in/2tfCvHw
Interactive Webinar: Treatment of Pediatric Brain Tumors:Low Grade Gliomas http://mayocl.in/2ueUSwu

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