Uterine papillary serous carcinoma (UPSC), Brain metastasis

calj

Hello all,

I'm new to this forum. Dx'd 2017 with UPSC stage 4B. Metastasized to lung, brain, adrenal gland over the course of 2019-2021. I've been NED since Sept 2021 (after adrenal gland removed). More details on my profile.

I'm curious to know of others who had USPC metastasized to brain - symptoms, treatment, status now. My understanding is that it is rare.

My symptoms: 2.5 years after dx, I started to have a very stiff neck. It was difficult to drive because I felt I couldn't turn my neck enough to see traffic, etc. Then I started having headaches - normally managed with Tylenol. I see my gyno oncologist every 3 months - I reported these symptoms. At that time, nothing was occurring every day and it was manageable. We would continue to monitor. 2 months after that appt I had to go to the ER due to uncontrollable vomiting right after drinking fluids.

Admitted to Neuro ICU: MRI showed 3 brain lesions. One large one at the base of my neck (causing the stiffness and pressing up against the thing that causes immediate vomiting). Put on IV steroids. Gyno oncologist, brain surgeons, neuro radiologist conferred and were discussing the need for surgery if lesions didn't decrease in size from the steroids. Lo & behold, they DID shrink enough. Was home in 4 days.

Treatment: targeted radiation to 3 lesions to reduce size further. On oral steroids for a period of time (I can't remember - maybe ~6 weeks).

Follow up: get brain MRI every 3 months and see brain oncologist. Everything has reduced in size and has remained stable.

Ongoing side effect: the 3 lesions are now "scabs." One of the "scabs" causes my right eye to have light flashes (not painful and can completely function). Brain oncologist has me on Keppra (levetiracetam) 1,000 mg/daily for these focal seizures. This med has been successful in completely eradicating the light flashes.

Sending warm hug and healing light to all.

Thanks!

Forherself

It sounds like you have had a long road and have good care. I have never heard of steroids for brain metastases to had to read about it. The article I read said one third of patients in the US with solid cancer tumors get brain metastases. That is surprising too. I do remember a couple of women here who had this. I would have to check their profiles but Pinky comes to mind. The article also said chemo doesn't work because there is a barrier to some substances going into the brain. So radiation or surgery is used. AND now immunotherapy is showing promise because it does enter the brain. You sound like you are dealing with all these challenges. I'm sure its not easy. But thank you for telling us. your experience. I'm sure there are others out there. Healing thoughts to you!

calj

https://csn.cancer.org/discussion/comment/1713572#Comment_1713572

Thanks for the response. I never heard about 1/3 of patients with solid tumors get brain metastases - I just know they consider it “rare” to occur for patients with UPSC. THE “rarity” is why I’m curious if anyone on this forum with UPSC had/has it.

Thanks again!

Forherself

Hopefully someone will respond. I do have a nephew with melanoma that spread to his brain. He is receiving immunotherapy and has been 3 years since finding it in his brain. He did have surgery for it too. It is rare in endometrial cancer.