My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.
She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.
The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.
I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.
Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.
Does anyone have any advice for a scared husband?
I am very afraid of what comes next and wanted to talk to someone that has been through this.
This is a follow up from my last post. It took 7 weeks to get a new MRI and the scan was good. No growth. They were concerned that because she had a seizure, that could be a sign of cancer growth. Her neurologist said that anti seizure meds can stop seizures only 70% of the time and two medications together can stop them 80% of the time but you can't get 100% with medication. She mostly has auras once every couple of weeks and the auras and the one seizure are usually at night. Good news all together.
Her oncologist was very up front this time for some reason. She said it is not if the cancer will come back but when. But... it will be caught early and there are many things that can be done to shrink or remove the regrowth. She has a very short scan schedule set up for her. Every 2 to 3 months. I suppose 3 years is an average time for recurrence after surgery but I don't know.
I know if you had 1000 people with the same tumor characteristics you will have 1000 different outcomes. This type of cancer is very individual and it depends on where it is and how old you are and how much was removed on the first surgery.
There are new treatments since 2020 that are very promising and the survival rate is going up all the time.
There are many encouraging things happening these days. Over all I am learning not to worry but to trust God has a plan for all of this that is way more than I will ever understand.
My wife has a much better attitude than I do and I need to learn from her.
My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.
She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.
The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.
I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.
Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.
Does anyone have any advice for a scared husband?
I am very afraid of what comes next and wanted to talk to someone that has been through this.
Hello @wwooden and welcome to Mayo Clinic Connect. I am so sorry for what your wife is going through, and you as her caregiver.
How is your wife doing amidst this latest news?
My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.
She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.
The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.
I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.
Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.
Does anyone have any advice for a scared husband?
I am very afraid of what comes next and wanted to talk to someone that has been through this.
So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.
I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.
Radiation will start on August 24 and followed with chemo after 30 treatments.
So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.
I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.
Radiation will start on August 24 and followed with chemo after 30 treatments.
Andlin, fellow member @barb789123 posted a while ago about having a very similar diagnosis in this discussion about oligodendrogliomas.
- Brain cancer: Anyone have an Oligodendroglioma? https://connect.mayoclinic.org/comment/102688/
Do you have far to travel for radiation or will you have to stay on location temporarily for daily treatments?
Hi @jessetimmer, welcome. I'll be interested to learn more about your brain tumor story. @dgruk@leri@ginette55 all have experience with an astrocytoma, although I'm not sure about the isocitrate dehydrogenase (IDH) mutation being involved in their situations. Hopefully they'll share more.
Jesse, is this a recent diagnosis for you? Have you had surgery?
So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.
I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.
Radiation will start on August 24 and followed with chemo after 30 treatments.
I am just diagnosed with this myself, I would love to talk with anyone going through any part of the process?
I am weighing going with any removal as the tumor is located in the left side motor control. I would most likely lose all function of the dominant hand and possible arm. The F-MRI show it there and the biopsy caused a temporary loss of function in the hand and fingers. 12 days post biopsy I have regained most of the strength and coordination in the hand.
Welcome @andlin. Fellow members @jessetimmer@dgruk@leri@ginette55 know what you're going through and will hopeful return to give support and share their experiences.
Andi, is surgery the only option or might radiation or chemo be options to consider? Are you a Mayo patient, if you don't mind my asking?
What a story, Jesse. And a new baby girl is such a blessing to live for and inspire you to keep going. She is almost 3 now. Your wife is nothing short of amazing. I simply cannot imagine the depths of inner-strength she must've had to tap into to get her family (and herself) through this with you.
It's not everyone who can work through all those treatments. Did you experience fatigue that required your employer to make accommodations for you? You may wish to add to this discussion:
- Going back to work after cancer: Is this exhaustion normal? https://connect.mayoclinic.org/discussion/going-back-to-work/
I am just diagnosed with this myself, I would love to talk with anyone going through any part of the process?
I am weighing going with any removal as the tumor is located in the left side motor control. I would most likely lose all function of the dominant hand and possible arm. The F-MRI show it there and the biopsy caused a temporary loss of function in the hand and fingers. 12 days post biopsy I have regained most of the strength and coordination in the hand.
Yes it will be 3 years this March 12th!! Thank God after surgery rehab I was able to go back to work with my employer.. I had a grade 2 Astrocytoma that was IDH Mutant which means really slow growing I could have been born with it!! It had finally got to golf ball size that's when I had seizures and the MRI revealed the tumor Thank God for Mayo Clinic and all their amazing staff of Drs nurse's and surgeons!! My surgery was 12hrs long and my surgeon Dr. Terrance Burns got 90percent of it!!! it was a bloody surgery and one of my nerves got cut during surgery so I lost my left side function since my tumor was on the right.. I went threw proton beam radiation to kill what was left and 9 months of chemotherapy pill form after that!! might I tell you still went to work everyday!! The tumor keeps shrinking to our surprise and no signs of regrowth..The only thing I still have but it keeps getting better is neuropathy on my left side and there is some cognitive side effects with how i use my body from surgery but nothing major!! Also might I tell you my amazing wife Abbie Timmer was pregnant with our girl Delaney Mae Timmer who we delivered a week after I got home on May 9th of 2019 which I thank God everyday too have such blessings!!
What a story, Jesse. And a new baby girl is such a blessing to live for and inspire you to keep going. She is almost 3 now. Your wife is nothing short of amazing. I simply cannot imagine the depths of inner-strength she must've had to tap into to get her family (and herself) through this with you.
It's not everyone who can work through all those treatments. Did you experience fatigue that required your employer to make accommodations for you? You may wish to add to this discussion:
- Going back to work after cancer: Is this exhaustion normal? https://connect.mayoclinic.org/discussion/going-back-to-work/
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This is a follow up from my last post. It took 7 weeks to get a new MRI and the scan was good. No growth. They were concerned that because she had a seizure, that could be a sign of cancer growth. Her neurologist said that anti seizure meds can stop seizures only 70% of the time and two medications together can stop them 80% of the time but you can't get 100% with medication. She mostly has auras once every couple of weeks and the auras and the one seizure are usually at night. Good news all together.
Her oncologist was very up front this time for some reason. She said it is not if the cancer will come back but when. But... it will be caught early and there are many things that can be done to shrink or remove the regrowth. She has a very short scan schedule set up for her. Every 2 to 3 months. I suppose 3 years is an average time for recurrence after surgery but I don't know.
I know if you had 1000 people with the same tumor characteristics you will have 1000 different outcomes. This type of cancer is very individual and it depends on where it is and how old you are and how much was removed on the first surgery.
There are new treatments since 2020 that are very promising and the survival rate is going up all the time.
There are many encouraging things happening these days. Over all I am learning not to worry but to trust God has a plan for all of this that is way more than I will ever understand.
My wife has a much better attitude than I do and I need to learn from her.
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8 ReactionsThank you for asking. She is doing better than I am. She is so strong in faith and has a great attitude.
Hello @wwooden and welcome to Mayo Clinic Connect. I am so sorry for what your wife is going through, and you as her caregiver.
How is your wife doing amidst this latest news?
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Helpful -
Hug
2 ReactionsMy wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.
She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.
The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.
I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.
Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.
Does anyone have any advice for a scared husband?
I am very afraid of what comes next and wanted to talk to someone that has been through this.
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Like -
Helpful -
Hug
1 Reactionsame diagnosis, same grade. radiation next week
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1 ReactionAndlin, fellow member @barb789123 posted a while ago about having a very similar diagnosis in this discussion about oligodendrogliomas.
- Brain cancer: Anyone have an Oligodendroglioma? https://connect.mayoclinic.org/comment/102688/
Do you have far to travel for radiation or will you have to stay on location temporarily for daily treatments?
So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.
I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.
Radiation will start on August 24 and followed with chemo after 30 treatments.
-
Like -
Helpful -
Hug
1 ReactionWelcome @andlin. Fellow members @jessetimmer @dgruk @leri @ginette55 know what you're going through and will hopeful return to give support and share their experiences.
Andi, is surgery the only option or might radiation or chemo be options to consider? Are you a Mayo patient, if you don't mind my asking?
I am just diagnosed with this myself, I would love to talk with anyone going through any part of the process?
I am weighing going with any removal as the tumor is located in the left side motor control. I would most likely lose all function of the dominant hand and possible arm. The F-MRI show it there and the biopsy caused a temporary loss of function in the hand and fingers. 12 days post biopsy I have regained most of the strength and coordination in the hand.
-
Like -
Helpful -
Hug
1 ReactionWhat a story, Jesse. And a new baby girl is such a blessing to live for and inspire you to keep going. She is almost 3 now. Your wife is nothing short of amazing. I simply cannot imagine the depths of inner-strength she must've had to tap into to get her family (and herself) through this with you.
It's not everyone who can work through all those treatments. Did you experience fatigue that required your employer to make accommodations for you? You may wish to add to this discussion:
- Going back to work after cancer: Is this exhaustion normal? https://connect.mayoclinic.org/discussion/going-back-to-work/