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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@toughcookie Aw, so cute! The beginning of this journey is overwhelming, but your little loved ones will give you strength and hope.
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So sorry to hear what you're going through, but I second everything @tougholdcrow has said. I started Kisqali 4 years ago at the highest dose of 600mg and was bedridden in excruciating pain. After stopping that and a 10 day break, I was on 400mg. It still required a period of adjustment of about 3 months, but it was tolerable. Once I adjusted, my QOL returned and I have enjoyed the past 4 years. Hang in there. We're here for you!
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thanks @Elenora were you able to function at the lower doses while you were adjusting? How are you feeling now?
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I was able to function, although I would not have wanted to work or care for young children. I improved over time with diet modification and deciding when to take immodium. I also found Zofran helpful for nausea. I asked my MO for something to use as a "rescue" medicine for days of bad cramping, as I don't like pain meds that affect my cognition. She prescribed Bentyl, which is used daily by IBS patients. I used it as needed and it was very effective.
One thing I wish I had known at the beginning was the value of palliative care. They aren't just for patients at the end of life but also for those dealing with chronic illness. They are a great source of referrals for various related problems and medications that your MO may not be able to prescribe. Believe it or not, many doctors are now considering Stage IV cancer a chronic illness as more of us live longer.
I now feel that I have a pretty good QOL. In the past 4 years, since becoming Stage IV, we've travelled and been able to spend time with our children and grandchildren.
You are in the center of a maelstrom right now, trying to process so many things being thrown at you while you are physically weak. Hang in there. I promise it gets better.
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I am awaiting a spinal biopsy to confirm bone mets. I had an MRI, PET/CT, bone scan and SPECT CT that all strongly suggest mets at T11 and possibly on my scapula, skull and L5 vertebrae. It is odd that we continue to test when only a biopsy can tell us the answers. I still hope that they find this problem in my spine is just an old fracture or Paget’s disease etc.
I am not excited about all of the concerns about SEs from the treatment. Since my original BC in 2015 I have been treated for 3 other primary cancers as well (kidney, Neuroendocrine of the ileum, and GIST in my stomach). So I have a complicated hx that might make the SEs dangerous to my health. I can’t really bear more intestinal problems or worries about hypercalcemia that could cause kidney stones in my one decent kidney.
I know this is a lot but just wanted to reconnect and see if this is still a place where we can share all of the challenges we face without fear everyone will turn away.
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Hi @tallnterrific , we’re so very sorry to hear this update. That’s a lot to be dealing with, especially on top of everything you’ve already been through over the years.
And yes, absolutely, this is still a place where you can share openly and honestly. You’re always welcome here, and no one is going to turn away. We’re all here for you, to listen, to support, and to walk alongside you through whatever comes next.
Sending you strength as you wait for the biopsy results.
Sincerely,
The Mods
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Thank you for the kind words. I appreciate having a place where it is ok to fall apart and stress out if that’s what I need. My family all want to minimize things and with them I feel I am catastrophizing when I try to dig deeper into the problems I may face. I am also cognizant of the need to wait until things are absolutely determined before letting all of my feelings go, but it doesn’t seem to be moving in a good direction.
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@tallnterrific There are more active threads here where you can share with people who have a similar diagnosis, ie. bone mets. I'm really sorry to hear of all these health challenges. That sounds really tough. Your medical team will want this imaging not only diagnostically but as a baseline to measure any further progression.
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What you say about the tests makes sense. It has just been a long wait to get to a diagnosis. That’s the part that now disturbs me. I joined this conversation because I have also had multiple retina tears. The first occurred right after my breast cancer diagnosis. I don’t think it was related to my cancer. I haven’t had a tear in 6 years or so and my father had retina problems as well. But the headline caught my attention and the recent posts were also relevant to my joining this conversation instead of older threads on bone mets. If there is an active thread on bone mets I have missed please let me know.
I go in for the preparatory bloodwork this afternoon and after that they will schedule the biopsy.
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@tallnterrific I remember the diagnostic process taking months. It was so stressful! I'm really sorry to hear about these retina tears, although I don't have any expertise myself. You are dealing with a lot.
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Tomorrow I start cycle 3 of Kisqali/fulvestrant. Clycle 2 was a easier than 1 but my lung mets progressed in cycle 1. Even though now the horrible dry gaging cough has resolved as of the end of cycle 2, my shortness of breath is limiting my ability to do much of anything. Doesn't help that I live in a townhouse. And where I live in BC, Canada trying to get oxygeyn has been a slow arduous process. I think someone said on this thread that it gets easier after cycle 3, but I wonder if my lung mets will? Anyone know of a lung mets thread for Kisqali/ribociclib patients? I'd really like to know if my shortness of breath will get better and/or how long it will take to improve. all the GPO said that after a first xray a month a month revealed the progression (likely happened while undergoing radiation) a second x ray 12 days ago indicated I was stable. Stable buy no quality of life. are there others suffering with lung mets while on Kisqali? Or how can I find a Kisqali lung mets thread?
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Hi @toughcookie , we’re really sorry you’re dealing with all of this.
We don’t currently have a very active Kisqali-specific lung mets thread, but you may still find it helpful to post in our "mets to lung" discussion, since there are others living with lung metastases who may relate to what you’re experiencing. That discussion has been a bit quiet for a while, but this could also be a really good opportunity to reactivate it and connect with others in a similar situation.
We really hope others will chime in with their experiences and support. Please keep us posted on how cycle 3 goes for you.
Best,
The Mods
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Hi @toughcookie, I’m sorry you are having problems breathing. You mentioned that your doctor ordered two x-rays and attributed your shortness of breath to lung mets progression related to radiation. Radiation to the lungs as well as Kisqali can cause pneumonitis, lung inflammation leading to shortness of breath even as it destroys cancerous cells. Pneumonitis cannot be differentiated from other lung issues on a x-ray. A high resolution CT (HRCT) allows the radiologist to tell whether infection, inflammation and/or lung nodules are contributing to the problem. Pneumonitis can be treated by oral or inhaled corticosteroids. You might ask your doctor about a CT or for a referral to a pulmonologist. I hope your oxygen gets delivered soon and the source of your SOB can be determined. All the best.
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interesting, thanks @maggie15 . Where I live in Canada I’d probably have to wait months to get a CT scan but dr did say the Xray show progression in the lymphatic system of the lungs. And she says this progression was causing the shortness of breath.
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