Brain cancer: Oligodendroglioma

Posted by robinjenkins70 @robinjenkins70, May 14, 2016

Any oligodrenglioma 2 diagnosis?

@IndianaScott

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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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!

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@IndianaScott

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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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

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@IndianaScott

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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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!

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@IndianaScott

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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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:
http://bit.ly/2sd6Ghe

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@IndianaScott

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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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

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@IndianaScott

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

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@andria111270

I was diagnosed on February 20th 2013 with stage 2 Oligodendroglioma.and have had 2 awake brain surgeries. The 2nd one has left me partially handicapped on my right side. Needless to say it is a life changing experience to say the least.

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Sorry to hear this! Had it gotten easier?

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@andria111270

I was diagnosed on February 20th 2013 with stage 2 Oligodendroglioma.and have had 2 awake brain surgeries. The 2nd one has left me partially handicapped on my right side. Needless to say it is a life changing experience to say the least.

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Good morning @user_chea8a92a I hope you have a pleasant day today!

In response to your question I can only say that each individual’s journey with brain cancer is unique and their own. How one person manages this strange and dastardly disease can be quite different from another. It is important to remember the disease also effects each patient in different ways. No reaction or action is right or wrong, it is just what a specific person experiences.

In my wife’s case the location of her tumor caused significant personality alterations so I often say while I was married to my wife for 41 years I was actually married to two different women. The pre-tumor woman and the post-tumor woman. I truly wish I could say it got easier for her, but she was such a changed person after the surgery it was simply too different for me to be able to say..

On the positive side she never wavered in her dedication to doing her best each and every day! She really fought to keep as positive an outlook as she could and to do whatever she could each day, even as her limits adjusted over time. Accepting and adjusting to new limits as they were thrust upon her were times of increased anxiety for sure, but then she soldiered on within her new paradigm of her physical/emotional/psychological condition. She’d find her new groove and we’d move along in it!

She was the truest embodiment of strength I have ever witnessed!

Peace & Strength!

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@IndianaScott

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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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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Interested in talking to anyone with this type of tumor!

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Hi @user_chea8a92a
I’ve been thinking about you and wondering how you are doing?

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I have II……. 5 years now ….tumor is growing and I have symptoms but they are not severe….. it was in parietal…..however they could not get the the whole thing……… I would like to hear from someone

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Hello and welcome to Mayo Connect @lovesheep123 I noticed this looks like your first post here. I am Scott and while I have not had this type of tumor my wife did. It was discovered in her frontal cortex.

It sounds as if you had surgery on your tumor and it was not all able to be removed. This was also the case with my wife.

There are lots of folks here who I am sure can also add their situation and diagnosis.

What questions do you have?

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Yes…… 6 years ago….. had resection , they could not get all

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@IndianaScott

Hello and welcome to Mayo Connect @lovesheep123 I noticed this looks like your first post here. I am Scott and while I have not had this type of tumor my wife did. It was discovered in her frontal cortex.

It sounds as if you had surgery on your tumor and it was not all able to be removed. This was also the case with my wife.

There are lots of folks here who I am sure can also add their situation and diagnosis.

What questions do you have?

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Really no questions …… mine is in Parietal section with some symptoms……. manageable but not always fun😊

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