Thalamic brain neoplasm: What are our options?

Posted by soccermom999 @soccermom999, May 10 5:44am

My 28 year old daughter was just diagnosed with a lesion in her thalamus just a few days ago. We are trying to determine next steps. She will be discharged from the hospital today. The neurosurgeon is recommending treating with radiation even without a biopsy. We are trying to research other options and MUSC in Charleston, University of Miami, Duke Tisch Brain Tumor Center and Mayo Clinic in Jacksonville. She is leaning toward having a biopsy but trying to determine which program to contact and which direction to take. We are all devastated at this point. Appreciate any advice. Thank you.

Hello @soccermom999 and welcome to Mayo Clinic Connect. First, let me start by saying I am so sorry for what your daughter and your family must be going through on the heels of this diagnosis. I can completely understand your desire to find others who understand and who may be able to help you.

I located an older discussion that may be of some value to you as it focused on tumor in the thalamus region of the brain. I am not sure how much aligns with your daughter's finding but wanted to share as a resource.

– Questions about glioblastoma resection, radiation afterward:
https://connect.mayoclinic.org/discussion/gbm-resection/
Since you mentioned interest in Mayo Clinic in Jacksonville, FL, you may use this link if you wish you make an appointment: http://mayocl.in/1mtmR63

Had your daughter been having symptoms or how was this discovered?

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Thank you for your kind worlds and pointing me to the other thread I’ll take a look. She’s been having headaches for a few months. She suffered a miscarriage recently and when her headaches worsened we thought it could be hormonal. They did a CT scan of her brain which was negative. When she started having nausea and vomiting is when she went to the ER and they ordered the MRI which showed the mass. We are working this week to get her seen. Thank you.

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@soccermom999

Thank you for your kind worlds and pointing me to the other thread I’ll take a look. She’s been having headaches for a few months. She suffered a miscarriage recently and when her headaches worsened we thought it could be hormonal. They did a CT scan of her brain which was negative. When she started having nausea and vomiting is when she went to the ER and they ordered the MRI which showed the mass. We are working this week to get her seen. Thank you.

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@soccermom999 I am so very sorry for her miscarriage. That is enough on its own, let alone all of this that has followed.

Will you please come back with an update once she is able to be seen?

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She’s at MUSC in Charleston. She was admitted via the ER on Friday. Biopsy is scheduled for tomorrow.

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@soccermom999

She’s at MUSC in Charleston. She was admitted via the ER on Friday. Biopsy is scheduled for tomorrow.

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@soccermom999 I am thinking of you both and waiting for an update when you have more information.

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She had her biopsy on Tuesday and the initial pathology does not look good. They are thinking glioblastoma. The mass is in the thalamus but they saw other spots and they biopsied by her temple. So it sounds like it has spread. We are devastated. She’s a young wife and stay at home mom to two beautiful little girls, 4 and 2. We are told she has to heal a few weeks from the biopsy before treatment can be started. I don’t really know next steps at this point.

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@soccermom999

She had her biopsy on Tuesday and the initial pathology does not look good. They are thinking glioblastoma. The mass is in the thalamus but they saw other spots and they biopsied by her temple. So it sounds like it has spread. We are devastated. She’s a young wife and stay at home mom to two beautiful little girls, 4 and 2. We are told she has to heal a few weeks from the biopsy before treatment can be started. I don’t really know next steps at this point.

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@soccermom999 I am so sorry. This is obviously going to take some time to absorb and also time to decide how best to go forward with treatment. As you begin to think through all of those very important and tedious decisions, I wanted to share a resource that may be helpful.

– Glioma: Care at Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/glioma/care-at-mayo-clinic/mac-20350259
I am thinking of you, your family and your daughter. Please come back as often as you can/need for support and to share your daughter's journey. This community is here for you.

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Thank you. I will take a look at the link. She is supposed to have a video consult with Mayo this coming week.

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@soccermom999

Thank you. I will take a look at the link. She is supposed to have a video consult with Mayo this coming week.

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Hello @soccermom999

I've been reading about your daughter's health issues. I am so sorry that she is experiencing these problems at such a young age. It must be very difficult for the whole family.

I am glad to hear that she will be having a video conference with Mayo Clinic. I'm sure that she will get some good direction and guidance.

Does she live close to any of the Mayo Clinic facilities?

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@hopeful33250

Hello @soccermom999

I've been reading about your daughter's health issues. I am so sorry that she is experiencing these problems at such a young age. It must be very difficult for the whole family.

I am glad to hear that she will be having a video conference with Mayo Clinic. I'm sure that she will get some good direction and guidance.

Does she live close to any of the Mayo Clinic facilities?

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Thank you so much. We are all so devastated. She does not currently live near any of the Mayo facilities but we do so we are talking about her coming to live with us possibly.

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@soccermom999

Thank you so much. We are all so devastated. She does not currently live near any of the Mayo facilities but we do so we are talking about her coming to live with us possibly.

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@soccermomm999, I so admire how wonderfully supportive you are of your daughter. She undoubtedly is grateful for your love and caring during this time. I know that this is stressful for you all.

Will you be able to post after the video conference? I would be interested in what their opinion would be.

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@hopeful33250

@soccermomm999, I so admire how wonderfully supportive you are of your daughter. She undoubtedly is grateful for your love and caring during this time. I know that this is stressful for you all.

Will you be able to post after the video conference? I would be interested in what their opinion would be.

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I sure can. Thank you for your kind words. I’m thankful for this forum.

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