1. < Brain Tumor

Surgery or no surgery: possible low-grade glioma?

Posted by kate4damian @kate4damian, Jul 24, 2019

Hello,
I was recently diagnosed with a brain tumor. I have seen one specialist. He reports by looking at my MRI only that I have a low grade glioma that can be monitored or I can get a biopsy to know the specific kind of tumor it is. I can also get it removed with some chance of having permanent weakness to my left arm or left body. I do have an appointment for a second opinion and have opted to get the biopsy but am torn on wheather I should just have it removed. Anyone with the same diagnosis,how did you decide to have it removed or just live with a tumor?

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youngwoman | @youngwoman | May 4, 2020
In reply to @colleenyoung "@youngwoman, I'm sure you won't read this today, but when you can return to the community,..." + (show)
@colleenyoung

@youngwoman, I'm sure you won't read this today, but when you can return to the community, I want you to know I was thinking about you on surgery day. I hope all went well. I look forward to hearing from you.

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yes the surgery went well Thanks collen .Any one had radiation how does it go are there side effects what are things to keep in mind while doing radiation any feedback will be greatly appreciated.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 5, 2020
In reply to @youngwoman "yes the surgery went well Thanks collen .Any one had radiation how does it go are..." + (show)
@youngwoman

yes the surgery went well Thanks collen .Any one had radiation how does it go are there side effects what are things to keep in mind while doing radiation any feedback will be greatly appreciated.

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@youngwoman what type of radiation are you getting?

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youngwoman | @youngwoman | May 10, 2020

Anyone had any itching then what did you do ?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 10, 2020
In reply to @youngwoman "Anyone had any itching then what did you do ?" + (show)
@youngwoman

Anyone had any itching then what did you do ?

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@youngwoman are you experiencing itching from the surgery healing or from radiation? Have you started radiation?

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youngwoman | @youngwoman | May 10, 2020

It is post surgery .Surgery done on 23rd April but now off of Dexamethasone and doctors also do not know they just suggested allergy medication but it does not help . Radiation starting from this wednesday

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youngwoman | @youngwoman | May 11, 2020
In reply to @colleenyoung "@youngwoman what type of radiation are you getting?" + (show)
@colleenyoung

@youngwoman what type of radiation are you getting?

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It is traditional Radiation or called Xray radiation stating wednesday and wil go for about 6 weeks .Spoke to neuro oncologist and just radiation no chemo. then after radiation about one month later will do the device optune lets see how it goes.

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youngwoman | @youngwoman | Jun 17, 2020

Has anyone had experience with optune. Going to start optune with Temodar . How is the device how long have you used any side effects or problems after having the device.

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sarasally2 | @sarasally2 | Jun 18, 2020
In reply to @sarasally2 "I was on a wait and see program and yesterday they told me the tumor doubled..." + (show)
@sarasally2

I was on a wait and see program and yesterday they told me the tumor doubled in size, I was furious because I did not want to wait a whole year to see if it had grown so now face more decisions. I go to Duke in NC but the Mayo seems to be the better choice according to some docs. However that is some distance and I am pretty much alone. Anyone had radiation?

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still waiting for the covid virus to calm down but the rates are rising, they say it is safe to do the radiation treatment. Anyone had it done for an AN?

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hinklda | @hinklda | Jul 18, 2020
In reply to @sarasally2 "still waiting for the covid virus to calm down but the rates are rising, they say..." + (show)
@sarasally2

still waiting for the covid virus to calm down but the rates are rising, they say it is safe to do the radiation treatment. Anyone had it done for an AN?

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I had radiation treatments for 33 days along with taking daily doses of chemo pills And didn’t have any health issues.
My focus is getting rid of the tumor (glioblastoma-stage 4)they found in the pons area. I had surgery and then radiation and now I am taking a stronger dose of chemo pills for 5 days every 28 days under the close eye of my urologist and getting an MRI every other month.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 19, 2020
In reply to @hinklda "I had radiation treatments for 33 days along with taking daily doses of chemo pills And..." + (show)
@hinklda

I had radiation treatments for 33 days along with taking daily doses of chemo pills And didn’t have any health issues.
My focus is getting rid of the tumor (glioblastoma-stage 4)they found in the pons area. I had surgery and then radiation and now I am taking a stronger dose of chemo pills for 5 days every 28 days under the close eye of my urologist and getting an MRI every other month.

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Welcome @hinklda. What chemo are you taking now? Is the urologist monitoring your for possible side effects on other organs from the chemo?

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