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kddjgong
@kddjgong

Posts: 4
Joined: Oct 18, 2017

Surgery risk on a 65 year old male with glioma grade II

Posted by @kddjgong, Mon, Mar 12 12:47pm

Hi all, a relative of mine is 65 year old. Eight month ago he was diagnosed with glioma grade II through MRI. (Back then he was nauseated and taken to ER.) He has been on anti-seizure since. It appears that the medication has the control, as he has no other symptoms other than occasional dizzy. he is able to drive and perform almost all regular activities without challenges. But doctors consider him a high risk patient, because of (1) his age and (2) glioma 's size / location. A lot of homework was done, including communicating with neuro-sugions and neuro-oncologists (in Mayo and outside). Different opinions were given on the treatment plan. Mayo seems more aggressive and suggests resection, whereas another medical team in other (also quite prestigious) medical center strongly suggested biopsy followed by chemo+radiation because of the high risky level in operation.

I wonder if there are any similar situations on the Connect. If yes, how was the risk taken into consideration prior to surgery? I have seen many discussions on treatment after resection, but couldn't find the risky operation itself. Are there any occasions that the patients were permanently impacted / paralyzed due to resection?The family has been debating over months long on taking resection or not… Any inputs are greatly appreciated.

REPLY

Welcome to Connect, @kddjgong. What a difficult choice to have to make when the location and size of the tumor makes surgery risky. Especially difficult when you get opposing treatment options from different centers of excellence. I'm tagging fellow members to see what treatment decisions they faced regarding surgery for glioma: @jaxjo @sandydominy1 @IndianaScott @user_chea8a92a @jkenser @valgame

KDDGong, you may also be interested in this older discussion:
– Inoperable Brain Tumor https://connect.mayoclinic.org/discussion/inoperable-brain-tumor/

How are the 2 different treatment centers weighing the risks?

Hello. I'm sorry to hear that your loved one is faced with this decision. Can you give more information such as where the tumor is located and how big it is? I can tell you that I was told by two different doctors that my brain tumor was inoperable because of where it was located. They both suggested that we just monitor the tumor. It was at that point that i sought out a third opinion at Mayo clinic and I thank God that I did. I had my first appointment on December 28th 2016 and had brain surgery December 30th 2016. They were able to safely remove my tumor plus a large margin around it. They ended up taking half of my temporal lobe. I was discharged home 48 hours after surgery and was back to full time doctoral classes 11 days later. I cannot speak highly enough about Mayo clinic. If mayo clinic is suggesting surgery to remove this tumor then I absolutely think that is the best option. These low grade tumors can change into high grade tumors so they need to be removed asap. If you have any questions at all please feel free to reach out to me xoxo I know first hand how difficult this is, but there is hope.

@jkenser

Hello. I'm sorry to hear that your loved one is faced with this decision. Can you give more information such as where the tumor is located and how big it is? I can tell you that I was told by two different doctors that my brain tumor was inoperable because of where it was located. They both suggested that we just monitor the tumor. It was at that point that i sought out a third opinion at Mayo clinic and I thank God that I did. I had my first appointment on December 28th 2016 and had brain surgery December 30th 2016. They were able to safely remove my tumor plus a large margin around it. They ended up taking half of my temporal lobe. I was discharged home 48 hours after surgery and was back to full time doctoral classes 11 days later. I cannot speak highly enough about Mayo clinic. If mayo clinic is suggesting surgery to remove this tumor then I absolutely think that is the best option. These low grade tumors can change into high grade tumors so they need to be removed asap. If you have any questions at all please feel free to reach out to me xoxo I know first hand how difficult this is, but there is hope.

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What a great story of hope! Thanks for sharing!!!

@jkenser, thank you so much for your reply! I am so happy to hear your successful surgery and rapid recovery. Wish you the best for your doctoral training. My relative's tumor is on the left insular lobe about 100cc in volume, with both temporal and parietal extension. Because of the location, the surgery would be an awake operation with help of intraoperative brain function mapping on the scene. It appears a highly complex procedure. The dilemma is that at this point, he has no major symptoms other than occasional dizziness, and is able to drive and perform all daily activities. The complex medical procedure might change his life right away and permanently in an unexpected, but possible, way.

Hello @kddjgong I am sorry for the reason you are here, but it is nice to e-meet you on Connect. I am Scott (aka @IndianaScott) and I am one of those folks @colleenyoung mentioned in her response to your post. My wife was diagnosed at 49 and fought brain cancer for 14+ years, during which I was her primary caregiver. I am not a medical professional and while I cannot speak from the perspective of a cancer patient, I can speak from that of a spouse, primary caregiver, and family member. Her initial diagnosis was for grade II.

During my wife's war she received many differing points of view, suggestions, treatment alternatives, and ideas for what course of care she might want to follow. Initially the center she received her first diagnosis from in Chicago told her to 'just go home and live with it'. She was not that kind of person and so sought out a second opinion, which we got at Mayo. Mayo offered my wife a series of options for her immediate needs and then throughout her war she consistently was offered varying options of care. Many of these were truly ones where she had to weigh the risks vs. the rewards. In her case she always made the choice of care which she viewed as providing the best quality of life for her, but not always offering the promise of the largest quantity of life.

In her case (and I know each cancer case is immensely different from every other as is each patient) she never regretted a single one of the choices she made, because they were informed choices and we always appreciated getting varying points of view from the different doctors and specialists at Mayo, from her post-operative therapy facilities, and from follow-up doctors. One drawback to her 'system' was the fact her decisions were not always accepted by family members as what they thought she should have chosen. But we managed that milieu as a battleground all its own.

These options patients are given are certainly never easy to weigh and may well not be the path for anyone else to follow, but as I said, for my wife it was her litmus test as she decided on her options. She did this up to and including her decision to enter home hospice care and her options once in home hospice.

I hope you are doing OK and please feel free to ask me any questions you might have.

I send you strength, courage, and peace!

@jkenser

Hello. I'm sorry to hear that your loved one is faced with this decision. Can you give more information such as where the tumor is located and how big it is? I can tell you that I was told by two different doctors that my brain tumor was inoperable because of where it was located. They both suggested that we just monitor the tumor. It was at that point that i sought out a third opinion at Mayo clinic and I thank God that I did. I had my first appointment on December 28th 2016 and had brain surgery December 30th 2016. They were able to safely remove my tumor plus a large margin around it. They ended up taking half of my temporal lobe. I was discharged home 48 hours after surgery and was back to full time doctoral classes 11 days later. I cannot speak highly enough about Mayo clinic. If mayo clinic is suggesting surgery to remove this tumor then I absolutely think that is the best option. These low grade tumors can change into high grade tumors so they need to be removed asap. If you have any questions at all please feel free to reach out to me xoxo I know first hand how difficult this is, but there is hope.

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EES1, you can read more about JKenser's story here:
https://connect.mayoclinic.org/discussion/my-story-1/
and here:
http://sharing.mayoclinic.org/2017/07/21/second-opinion-at-mayo-clinic-changes-a-nurses-destiny/

Liked by EES1

@jkenser

Hello. I'm sorry to hear that your loved one is faced with this decision. Can you give more information such as where the tumor is located and how big it is? I can tell you that I was told by two different doctors that my brain tumor was inoperable because of where it was located. They both suggested that we just monitor the tumor. It was at that point that i sought out a third opinion at Mayo clinic and I thank God that I did. I had my first appointment on December 28th 2016 and had brain surgery December 30th 2016. They were able to safely remove my tumor plus a large margin around it. They ended up taking half of my temporal lobe. I was discharged home 48 hours after surgery and was back to full time doctoral classes 11 days later. I cannot speak highly enough about Mayo clinic. If mayo clinic is suggesting surgery to remove this tumor then I absolutely think that is the best option. These low grade tumors can change into high grade tumors so they need to be removed asap. If you have any questions at all please feel free to reach out to me xoxo I know first hand how difficult this is, but there is hope.

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Thank you!!!!

Hi @IndianaScott thanks much for you to share your wife's information. I have passed on the details to my relative and the immediate family members. It's very helpful in guiding the decision making process, including the long term preparation of hospice care. We are learning, and will continue to do so, in the course of the uneasy journey. But with help from many people, like yourself, @jkenser, and large pool of Mayo Connect participants, I can sense a strong support from all of you. Thanks again.

@kddjgong My pleasure! One of the tough parts of caregiving, chronic disease, etc. is often the isolation and feeling that you are the only one going through this journey. It is that sharing aspect, which brought me to Connect, and which I love about it the most!

Continued courage, strength, and peace!

Listen carefully to what may happen if the tumor is removed. I had a diffuse astrocytoma grade 2 removed from my left cerebellum in March 2017. It was discovered (but called a cyst or low grade unidentified growth) 20 years earlier but my doctors said not to worry about it and did not check it again until 2017 when I began getting dizzy and dropping things. I am sure surgery saved my life, but my life isn't all that great because of the location of the tumor and the damage done by surgery and radiation. I've lost my standing and walking balance and left side coordination of my arm and hand, and my eyes won't focus. I can't drive or do the art work or gardening I once did. My head is extremely sore where they did the surgery. I live 2,000 miles from Mayo and can't seem to find any local medical professionals to help me.
Would I do it again? Ask me in another year. My advice is to get multiple second opinions to try to determine what will happen if you do nothing, and how you will function after surgery, radiation, and chem takes at least a year of your life. Good luck.

@spangles

Listen carefully to what may happen if the tumor is removed. I had a diffuse astrocytoma grade 2 removed from my left cerebellum in March 2017. It was discovered (but called a cyst or low grade unidentified growth) 20 years earlier but my doctors said not to worry about it and did not check it again until 2017 when I began getting dizzy and dropping things. I am sure surgery saved my life, but my life isn't all that great because of the location of the tumor and the damage done by surgery and radiation. I've lost my standing and walking balance and left side coordination of my arm and hand, and my eyes won't focus. I can't drive or do the art work or gardening I once did. My head is extremely sore where they did the surgery. I live 2,000 miles from Mayo and can't seem to find any local medical professionals to help me.
Would I do it again? Ask me in another year. My advice is to get multiple second opinions to try to determine what will happen if you do nothing, and how you will function after surgery, radiation, and chem takes at least a year of your life. Good luck.

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Was your surgery at Mayo? So sorry for all you have had to go thru. Wishing you quality of life and better times.

@spangles

Listen carefully to what may happen if the tumor is removed. I had a diffuse astrocytoma grade 2 removed from my left cerebellum in March 2017. It was discovered (but called a cyst or low grade unidentified growth) 20 years earlier but my doctors said not to worry about it and did not check it again until 2017 when I began getting dizzy and dropping things. I am sure surgery saved my life, but my life isn't all that great because of the location of the tumor and the damage done by surgery and radiation. I've lost my standing and walking balance and left side coordination of my arm and hand, and my eyes won't focus. I can't drive or do the art work or gardening I once did. My head is extremely sore where they did the surgery. I live 2,000 miles from Mayo and can't seem to find any local medical professionals to help me.
Would I do it again? Ask me in another year. My advice is to get multiple second opinions to try to determine what will happen if you do nothing, and how you will function after surgery, radiation, and chem takes at least a year of your life. Good luck.

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I'm so sorry you're having so many issues. I can tell you it has been 15 months since my surgery and I'm still not 100% and may never be, but I'm alive and for that I am so grateful. I've talked to several people that have gone through brain tumor removal and they say it takes about 2 years to really start feeling like yourself again. I will keep you in my prayers for complete healing xoxo I'm happy to hear that they were able to remove your tumor.

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