1. < Gynecologic Cancers

Uterine Cancer with brain metastasis

Posted by Mdotsie @mdotsie, Nov 17, 2016

I have had two metastatic brain tumors. Surgery for the second one was in January. Due to extreme vertigo, I have not been able to resume much of my normal life. My neurosurgeon says eventually this may correct itself but meanwhile I have to live with it. This is getting harder the longer it goes on. I would like to hear from others with similar issues and know how you are coping with it.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 31, 2017
In reply to @stayinghopeful "She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has..." + (show)
@stayinghopeful

She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has no cancer anywhere else. We are looking for some direction as this is very rare. 2nd opinion or any suggestions as to treatment is what we are after. Have heard her cancer might respond to keytruda but the chemo oncologist says chemo and keytruda are not shown to be beneficial at this time as there is not evidence of any active tumor right now.

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I wish you and your wife all the best with stereotactic radiosurgery (SRS). A fellow Connect member, @mrser52, just completed SRS treatment for tentorial menigioma. While it was not for metastasis as in your wife's situation, perhaps you'd like to ask Mrser52 questions about what SRS treatment was like and what you might expect tomorrow.

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Elaine R. | @mrser52 | Dec 31, 2017
In reply to @stayinghopeful "She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has..." + (show)
@stayinghopeful

She’s had the tumor removed and is scheduled for stereotactic radiation surgery on 1/12. She has no cancer anywhere else. We are looking for some direction as this is very rare. 2nd opinion or any suggestions as to treatment is what we are after. Have heard her cancer might respond to keytruda but the chemo oncologist says chemo and keytruda are not shown to be beneficial at this time as there is not evidence of any active tumor right now.

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I will answer any question that you and your wife might have. Happy to help.

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stayinghopeful | @stayinghopeful | Dec 31, 2017

I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s treatment of your cancer? Thanks.

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2 replies
Elaine R. | @mrser52 | Dec 31, 2017
In reply to @stayinghopeful "I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s..." + (show)
@stayinghopeful

I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s treatment of your cancer? Thanks.

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I have a tentorial meningioma brain tumor, I didn't go to the Mayo Clinic I use this site for support. But I did have the SRS treatments. I had 5 of them here in Grand Rapids, MI During my SRS treatments during 3 of them I had to take Xanax. For this treatment they make a mask to form the shape of your face and the back of your head to use during these SRS treatments. My treatments lasted 15 minutes each. The making of the mask takes around 30 to 40 minutes. then the SRS treatments begin. I wish you well and good luck to you, If there is any thing else you would like to know please ask, I will try to answer your questions the best that I can.

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vsinn2000 | @vsinn2000 | Jan 1, 2018
In reply to @colleenyoung "Welcome to Connect, @stayinghopeful. I'm glad you found us. I @kate123 and @mdotsie will return to..." + (show)
@colleenyoung

Welcome to Connect, @stayinghopeful. I'm glad you found us. I @kate123 and @mdotsie will return to share their personal experiences with endometrial cancer with you. You mention that you are looking for referrals. Do you mean referral for a second opinion? If yes, I'd like to invite @vsinn2000 to share about her experience at Mayo Clinic Cancer Center where she is being treated for a gynecological cancer.

StayingHopeful, will your wife be getting treatment for the brain metastasis? Has she been referred to a palliative care team?

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Staying hopeful,
Welcome. If you you truly want a second chance, a second choice, and a second family of the the most supportive virtual friends, medical care beyond compare and a compassion you will see no where else then you are in the right place. My story was a nightmare. I had no where to turn for experienced care provider for my tumor. Please, please take time to read back through the threads of our crazy conversations. I will answer any and all questions you need to ask. Pm me and I will even answer your phone call. Your wife would be in the best hands, and my husband can tell you first hand that your wife will be in the right place. Please, don't hesitate to reach out. It will be the best, most comforting choice you will make.
All my love and support to you both,
Vicky

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vsinn2000 | @vsinn2000 | Jan 1, 2018
In reply to @stayinghopeful "I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s..." + (show)
@stayinghopeful

I understand you had menengioma. What can you tell me about the Mayo Clinic and it’s treatment of your cancer? Thanks.

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Stay strong. One day, one treatment at a time. We are here for virtual hand holding 24/7.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 1, 2018
In reply to @colleenyoung "Welcome to Connect, @stayinghopeful. I'm glad you found us. I @kate123 and @mdotsie will return to..." + (show)
@colleenyoung

Welcome to Connect, @stayinghopeful. I'm glad you found us. I @kate123 and @mdotsie will return to share their personal experiences with endometrial cancer with you. You mention that you are looking for referrals. Do you mean referral for a second opinion? If yes, I'd like to invite @vsinn2000 to share about her experience at Mayo Clinic Cancer Center where she is being treated for a gynecological cancer.

StayingHopeful, will your wife be getting treatment for the brain metastasis? Has she been referred to a palliative care team?

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Vicky, Thank you for being willing to share your story, and the experience you had at Mayo Clinic's cancer center.

@stayinghopeful you can read more about Vicky's journey here:
- Radiation therapy for vulvar cancer https://connect.mayoclinic.org/discussion/radiation-therapy-for-vulvar-cancer/

If you would like to seek a second opinion at Mayo Clinic, here is the contact information: http://mayocl.in/1mtmR63

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 1, 2018

Hi Vicky @vsinn2000

You are a living example of the truth of those words! Thanks for sharing.

Teresa

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1 reply
vsinn2000 | @vsinn2000 | Jan 1, 2018
In reply to @hopeful33250 "Hi Vicky @vsinn2000 You are a living example of the truth of those words! Thanks for..." + (show)
@hopeful33250

Hi Vicky @vsinn2000

You are a living example of the truth of those words! Thanks for sharing.

Teresa

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Teresa,
Here come those darned waterworks! I can honestly say the virtual support, hand holding, reassurance and kindness gave my husband and I the strength we so desperately needed. Every single time! My respect for your strength, your dedication to the community, and your compassion have made me feel like I have a best fend out there that I can truly get what other friends without medical challenges can never understood. You , Colleen and I have a standing agreement for that coffee date whenever you end up back at Mayo.
Hugs,
Vicky

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vsinn2000 | @vsinn2000 | Jan 1, 2018

As hard as it is, I've learned I can no longer be wonder woman. I have to admit to being tired, take naps, stop micromanaging everything and worst of all.... throw out my lists of things to be done. Following my own advice on resting and letting the other stuff go was my biggest challenge but my most successful coping strategy.
Be kind to you,
Vicky

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