Eye problems

[Rego-park]

Hi girls does anyone have Mets to brain if so did it effect your eyes ? Please help to understand 🙏🙏🙏🙏🙏🙏god bless everyone

[Ursula_I]

Hello dear Rego

I have newly-diagnosed brain mets (a few weeks ago). I thought I didn't have symptoms (CT to head was done at my insistence because I wanted to know if the skull mets had progressed! Totally wasn't expecting the brain 😢).

Anyway, I digress. I thought I didn't have any symptoms. But actually since the diagnosis I have noticed my right eyelid fluttering and also both eyes going 'filmy' / losing focus every now and then.

From the moment of diagnosis I am not allowed to drive which is awful.

Today I have woken up with conjunctivitis in one eye! Probably nothing to do with the brain, though

I hope you are feeling ok. Nothing but doom and gloom from the professionals here . I haven't processed it yet. What treatment has been recommended to you? I have just finished five sessions of whole brain radiotherapy.

All the best to you xxxxx

[Rego-park in reply to Ursula_I]

Crazy life be strong I’m very upset at her oncologist I think everyone should get a c t of the head every 6 months knowing this can happen she never mentioned to us now this 😂😂

[PJBinMI]

I haven't had any eye/vision issues related to MBC, but did have cataracts removed about 1 1/2 years ago and was definitely having problems before those procedures (each eye done a few weeks apart). If I thought something as important as my eyes/vision was being impacted by mets I would 1) have an in depth conversation with my onc about this, with my husband or another close family/friend with me for a second set of ears and brain to help understand this, and I would probably schedule an appt with an ophthalmologist who is either associated with a cancer center or a medical school, somebody with very specialized training about how cancer can impact our eyes! If you are in the US, the top tier of cancer centers are the "Comprehensive Cancer Centers," listed on the National Cancer Institute website. These are affiliated with medical schools and have very specialized oncologists. My own local onc suggested I see a bc onc at a CCC about 100 miles from my home. I didn't feel I needed to do that, but I trusted her and did it. When that specialized bc onc examined my breasts, it felt different than any breast exam I'd ever had beffore m as though she had radar in her fingertips! I went back there again about three years ago when cancer first showed up someplace besides my bones and I am so glad to have this resource available to me. I cannot over state what these very specialized and experienced oncs can do for us!

[Rego-park in reply to PJBinMI]

Which exactly hospital? CC.C? Where is it ?

[Rego-park in reply to PJBinMI]

I understand but do they treat you with other medications then a regular oncologist?

[PJBinMI]

It used to be really easy to find the NCI's list of Comprehensive Cancer Centers. Not so easy now. Here's a link I found after about five minutes of very educated search on their website: cancer.gov/research/infrast... There over 50 CCCs spread out across the US, but with more on the coasts that in the middle of the country. Many of them can arrange a place for us to stay overnight at less than current hotel rates, for those of us who have to travel a long way. My experience, so far, has been that the BC specialist oncs I have seen haven't suggested changing current meds but they have confirmed that what my local onc is doing is what they would do and they have been encouraging and i know that if I reach a point when complicated or difficult decisions have to be made, I can get an appointment there. Though I live in a rural area and have to travel about 80 minutes each way to see my "local" onc, there are at least four CCCs within a 2 1/2 hour drive time for me, so if I ever need very specialized recommendations and possibly a third opinion, I do have access. As always, we each have our own experience with cancer, cancer treatment and our oncs! I worked in health care for 20 years and have alot of experience talking with doctors and am usually pretty able to keep my emotions in check while I have conversations with my doctors about treatment and that helps me alot. I can cry in my husband's arms when we get back to the car! When I need to.