Mdotsie
@mdotsie
@mdotsie
Posts: 7
Joined: Jul 14, 2016
Uterine Cancer with brain metastasis
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.
Liked by vsinn2000
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 11008
Joined: Jul 23, 2014
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?
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
Liked by Teresa, Volunteer Mentor, vsinn2000
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 10860
Joined: Mar 28, 2016
Hi Vicky @vsinn2000
You are a living example of the truth of those words! Thanks for sharing.
Teresa
Liked by vsinn2000
vsinn2000
@vsinn2000
@vsinn2000
Posts: 99
Joined: Nov 05, 2017
Hi Vicky @vsinn2000
You are a living example of the truth of those words! Thanks for sharing.
Teresa
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
Liked by Teresa, Volunteer Mentor
vsinn2000
@vsinn2000
@vsinn2000
Posts: 99
Joined: Nov 05, 2017
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
Liked by Teresa, Volunteer Mentor
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 10860
Joined: Mar 28, 2016
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
Liked by vsinn2000
stparker54
@stparker54
@stparker54
Posts: 53
Joined: May 13, 2020
When I had renal cell cancer, it metastasized to my brain. Instead of surgically removing the lesions from my brain, the doctors treated them with non-invasive Cyberknife, It's a robotic machine that sends targeted radiation to kill the cancerous cells in the brain, without damaging the healthy brain cells. I had three of these treatments in 2010; they lasted about 45 minutes each and then I would go back to work. It's been 10 years since I've been free of brain cancer. Susan54
Liked by Colleen Young, Connect Director
goldengirl2
@goldengirl2
@goldengirl2
Posts: 36
Joined: Oct 25, 2018
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.
this has just happened to me. tumour was removed form cerebellum radiation is suggested but oncologist says as there is no evidence of it i am better to wait. How did you make out with yours staying hopeful? I notice his is from 2017 . so weird to have it show up in the brain eh?
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 11008
Joined: Jul 23, 2014
this has just happened to me. tumour was removed form cerebellum radiation is suggested but oncologist says as there is no evidence of it i am better to wait. How did you make out with yours staying hopeful? I notice his is from 2017 . so weird to have it show up in the brain eh?
Hi @goldengirl2, I'm tagging @stayinghopeful so that hopefully she will see that your question was meant for her.
I'm glad that they were able to remove the tumor in the cerebellum with clear margins. Did you get two different opinions from the doctors: one saying to follow-up with radiation and the other suggesting to watch and wait? What are you considering?
this has just happened to me. tumour was removed form cerebellum radiation is suggested but oncologist says as there is no evidence of it i am better to wait. How did you make out with yours staying hopeful? I notice his is from 2017 . so weird to have it show up in the brain eh?
Stereotactic radiation and Keytruda kept it at bay for 2 years. Recurrence in March spotted an routine scan of this year and treated with radiation and Lenvima, which is approved for uterine cancer. So far so good. Remaining hopeful. Good luck!
Liked by Colleen Young, Connect Director
@vsinn2000
Stay strong. One day, one treatment at a time. We are here for virtual hand holding 24/7.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor