eye (ocular) metastasis - a rare location for metastatic breast cancer
Three weeks ago I thought I might have a retinal tear when I woke up one morning with bright flashes in my eye. But my optometrist saw something different. Long story short he referred me to an ocular oncologist and she diagnosed me with breast cancer eye metastasis after almost 9 years NED. It's a rare location (only about %.05 or BC mets locations). Today I had a PET scan and am awaiting a CT scan. I think it's in my pelvis too as I've had some pain in the area for almost two months and in the last month started getting a dry cough with some chest pain. Ugh, the waiting to find out how bad (or not so bad) it is, is the worst period of waiting isn't it? Has anyone else on this forum had eye mets?
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Hi @toughcookie,
We're so very sorry to hear of this progression. We have had a handful of members who in fact have been diagnosed with metastasis to the eye - hopefully one of them will chime in soon with their experiences.
In the meantime, this website discusses how to spot an eye metastasis and treatment for it:
In addition, we hope you'll consider joining us in one of our free, weekly MBC Virtual Support Groups to get more support. You can see the schedule and register here:
Sending hugs while you wait for answers and a plan. We're all here for you!
—The Mods
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Peace and healing thoughts for you, @toughcookie . I'll be following your post on this as I am monitored yearly for this by my opthalmologist with my history of melanoma long before the bone mets. Hopefully there are good treatments and results. Please keep us posted on how you are doing. Thinking of you. Terry B.
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The CT and PET scans revealed widespread mets to my bones, liver and lungs, in addition to the eye. My treatment began with 10 rounds of radiation to my humerus bone, pubic bone, sternum, and eye. The pain began to decrease after one treatment and I'm now pain free! But I started cycle one of Kisqali on March 23 and it has been debilitating. I had to stop four days before the end of cycle due to extreme side effects (nausea, vomiting, heartburn, dizziness, confusion, etc.). My neutrophils were at 0.5! I had extreme dehydration and had to get almost 3 litres of IV fluids in the ER. Five days after fluid infusion and seven days after my last dose of Kisqali, I'm finally able to eat and drink fluids and the nausea has resolved, but not my fatigue. In hindsight I wished they'd delayed the start of oral meds until my rads side FX (nausea/loss of appetite and extreme fatique) had resolved. I do see the oncologist on Monday, April 20 as I'm supposed to start cycle two but am going to request a delay until I am recovered from rads, as well as a dose reduction. I've no illusions as to how widespread my mets are, but my focus is quality of life, however long or short that life may be.
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Hi @toughcookie - We’re so sorry to hear about the progression and everything you’ve been dealing with. We understand, it’s a lot all at once. We’re glad to hear the radiation helped with the pain, but those side effects you describe are no small thing.
If you haven’t already, you might also consider joining one of our free Virtual Support Groups for people living with metastatic breast cancer. They can be a really supportive space to connect with others who understand what this phase is like:
We’re really glad you came back to update us. Please keep posting when you can. We’re here for you 👩❤️👩
The Mods
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@toughcookie I am so sorry to hear that you've been going through all this. I started Kisqali/letrozole right after chemo and it was tough at first since I was already so fatigued. I'm very used to the drugs now and live a normal life. I had a dose reduction of Kisqali because of low neutrophils (600 to 400) and it's working just fine for me. Hang in there. You've been through a lot and your body needs time to adjust. My hopes that this treatment works very well for a long time.
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Thank you @tougholdcrow. Good to know a dose reduction could help. And a pause to starting back on protocol. I go through periods feeling like I just want give up but reading everyone’s comments and stories gives me hope. I'm a single mom to a 14-year-old a cat, a four-year-old mini Labradoodle and a 12-year-old Boston Terrier/Pug cross. Given my high risk for recurrence (of which unfortunately happened) I knew when I got my youngest dog there was a risk I may not outlive him. Never in a million years would I have thought I might not outlive my older pets 😥. People tell me of stories of women living well for years on CDK 4/6 inhibitors. After the horrendous first cycle, I fear I won't live months even. Hopefully a dose adjustment and a pause in treatment until I feel recovered from rads and cycle 1 of Kisqali will make the treatment bearable so I can continue to love and care for my fur babies as long as possible.
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