Orbital (Eye) metastases - anyone?

Options
DoorNo2
DoorNo2 Member Posts: 2
edited October 2021 in Stage IV/Metastatic Breast Cancer ONLY

Hi - have been recently diagnosed with (though apparently had it for over 18 months) doctors stumbling around trying to treat "symptoms" and not look at the larger picture.

Have discovered that there are relatively few folks that have heard of it and nobody knows anyone who has ever had it.

Is there anyone out there who can give me some guidance on this? I'm feeling a bit like a unicorn.


· Share on FacebookShare on Twitter

Comments

  • KBL
    KBL Member Posts: 2,521
    edited October 2021

    DoorNo2, there is a member here who has eye metastasis. Her screen name is bmpntherd.

    · Share on FacebookShare on Twitter
  • bmpntherd
    bmpntherd Member Posts: 31
    edited October 2021

    Hello Doorno2 (what a great name)! I was diagnosed with breast cancer in 2014 and had 6 years of remission. My metastatic disease was first diagnosed in March and my eye changes were my first presentation of metastic disease. It was sub retinal on the right only and led to fluid under the retina which gave me a sudden visual change. (I had had eye examinations a year ago). I first saw a retinal specialist who had the personality of bricks - said that the tumor was a met and hadn't I had breast cancer. I went numb - had not thought of breast cancer as I had stage 2a with no regional spread in 5 sampled nodes and a mastectomy, normal blood work and exam by oncologist in January. He referred me to an oncology ophthalmologist in the area (the only one in CT). He did angiograms, US and started treatment with eye injections (who knows what). My oncologist was skeptical but that didn't last when my scans showed bone, lung and probably liver mets. I was treated with Verzenio and anastazole and the tumor growth in the eye slowed but did not stop. He then tried dye laser - no improvement. When it got too close to the optic nerve, we both agreed to use external beam radiation which was well tolerated.

    I had progression of disease and was switched to paclitaxol chemotherapy for 3 months. I'm happy to say that my 2 mets to the right I are improved, pressures are stable and cornea looks good. My disease has regressed elsewhere and I'm feeling better than ever. My vision is correctable to 20/35 in that eye. The left eye remains clear of disease.

    Eye mets are usually due to carcinoma. The good news is that they usually spread to highly vascular areas of the eye and therefore respond to oral and/or IV chemotherapy. The bad news is that they usually spread from the lung. This is also common other tumors that have a proclivity to met to the lung.

    Please feel free to contact me with any questions, I'm happy to talk or provide an email.



    · Share on FacebookShare on Twitter
  • GG27
    GG27 Member Posts: 2,128
    edited October 2021

    I have bilateral retinal mets. They were discovered by accident when I had blurriness to one eye which was a side effect of a chemo I was on. By the time they were discovered they were "dead" that's how the ophthalmologist described them. He said he is seeing more eye mets because we are living longer. I had no symptoms of them. It's been about 5 years since they were discovered & they haven't changed at all & don't cause me any issues.

    · Share on FacebookShare on Twitter
  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    Hello Unicorns,

    Evidently I’m joining the club with sclerotic Mets to the bone and connective tissue around the eyes along with some to other head areas like the TMJ. Waiting to see whether these are new and active or old and annoying.
    The reading I’ve done so far indicates head Mets are a rare presentation (hence unicorn status), often overlooked and misdiagnosed. Radiation appears to be the most frequent treatment. I’ll let you know when I learn more.

    · Share on FacebookShare on Twitter
  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2021

    I am sorry to hear you're dealing with ocular mets, which are treatable with local and systemic therapy.

    Below is a list of options from my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For information about treatments, side effect mitigation, cutting edge research and more please visit https://www.insidersguide.com

    • PhotoDynamic Therapy (PDT) is a treatment that uses special drugs, called "photosensitizing agents," along with light to kill cancer cells. The drugs only work after they have been activated or "turned on" by certain kinds of light. In one study, 9 metastasis in 8 eyes were treated with PDT. After PDT, complete control with resolution of sub retinal fluid was achieved in 7 tumors (78%), with mean tumor thickness reduction of 39%. Two tumors failed to respond to PDT, both requiring plaque radiotherapy.
    • Plaque Brachytherapy is a form of radiation therapy that delivers a highly concentrated radiation dose to the tumor with relatively less radiation to surrounding healthy tissues and takes only two days to complete, compared with daily radiation for four weeks with external beam radiation. Plaque radiotherapy has proven effective in cases of solitary metastasis and those that failed to respond favorably to external beam radiation. Most patients treated with radiation maintain good vision. One doctor reported having a patient with very advanced MBC and 15 tumors in her eyes. She was able to preserve 20/20 vision for the next 3 or 4 years.
    • Proton or Charged Particle (Pencil Beam) Therapy: Traditional radiation therapy affects everything in its path, so doctors have to limit the dose delivered to the tumor in order to minimize damage to surrounding healthy tissue. In proton therapy, protons enter the body with a low dose of radiation which increases when the beam slows down within the tumor, and then the protons stop without going any further to harm further tissue. Compared to an X-ray beam, a proton beam has a low "entrance dose" (the dose delivered from the surface of the skin to the front of the tumor), a high dose designed to cover the entire tumor, and no "exit dose" beyond the tumor. The combined effect is claimed to provide greater precision in targeting the tumor with a more potent dose of radiation.
    • Radiation Therapy or Laser Surgery: Treatment for metastasis to the eye may include radiation therapy, although laser surgery may be used in some cases. External-beam radiation is a common treatment option, especially if there is multifocal involvement, but occasionally plaque brachytherapy (described above) is used if there is one tumor.
    • Systemic Therapy such as chemotherapy (especially a Taxane [Taxol, Taxotere, or Abraxane]), hormonal and/or targeted therapy may sometimes be helpful against ocular metastasis.


    · Share on FacebookShare on Twitter
  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited October 2021

    Hi lwrite,

    No mets to my eye (yet) but yes, I take it skull mets are quite uncommon. My MO indicated that they don’t typically scan the head for this reason. Mine, at the base of my skull initially, were discovered when I had an MRI to check on possible mets to the brachial plexus (thankfully negative. I have had weird jaw and right eye socket sensations lately which I am monitoring since they still don’t scan my head regularly.

    · Share on FacebookShare on Twitter
  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    Thank you, Anne! The information in your book is incredibly helpful as always! I appreciate you jumping in to help.

    I feel prepared for my upcoming appt with the RO. Brain scan was normal so that was a huge relief.
    Sadieservant- You are so right about this seldom being seen due to lack of head scans. A bad tooth triggered the CT where they showed up. I may not have to do anything if they are old lesions from my original dx.

    Maybe the radiologist just got excited to see something interesting :-



    · Share on FacebookShare on Twitter
  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    Update and good news. The RO said none of the many mets on the head scans looked active and she wouldn’t recommend radiation. She also seemed shocked I was still on the first one of treatment after six years. She used the word remission and recommended a chiropractor for head pain! With Lobular mets I’m cautiously optimistic.

    The fear was real even though active Mets weren’t. . I do wish there were good tools for staying off the ledge when we are waiting for news.

    Knowing the bad news is inevitable is especially hard. Kind thoughts going to those facing this kind of dx.I’m holding on to the good treatment info for addressing active head mets in the future.

    DoorNo2- Have your doctors given you some treatment guidance?

    · Share on FacebookShare on Twitter
  • KBL
    KBL Member Posts: 2,521
    edited October 2021

    Iwrite, I’m so happy for you. I agree, it’s hard to keep having to think it could be progression. That is awesome you’re still on your first line.

    I would still be on as well, but I also have ILC, and my gut told me even though they couldn’t see anything on scans (it’s always been that way), I was having symptoms that told me otherwise. We have to listen to our bodies.


    · Share on FacebookShare on Twitter
  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    So true KBL! ILC makes it so important to stay involved i our own care

    · Share on FacebookShare on Twitter
  • DoorNo2
    DoorNo2 Member Posts: 2
    edited October 2021

    Hi - thank you ALL for your sharing. I'm so sorry for making my initial post and then going "dark" - not intentionally! Things got a little topsy-turvy.

    I can appreciate all the imagining that some have gone through and how frustrating it can be. I've had a brain scan done every 6-12 months for the past 15 years = so having baseline or comparisons of my head wasn't a problem - but since it was because of seizures and a "flare" that appeared 2 years after I'd completed chemo and the concern for MBC to my brain - it was all hands on deck. Four days inpatient for testing (2006) and then the next few weeks and months of appointments w/Neuro-oncologist, and tumor boards. Eventually did a brain biopsy (3" scar" behind my right ear - May 2007) and the diagnosis that it's "appears to be demyelination" - shrugged shoulders and continued monitoring for MS and Epilepsy.

    Which means - 15 years later when there are some minor "blips" on my imaging (sort of behind my right eye) and issues with dry eye - they weren't really seeing "anything out of the ordinary."

    It was my Ophthalmologist who requested another scan - very specific orbital/ocular - much finer "slices" and there it was. My symptoms had been posterior scleritis, swelling, loss of vision, filaments but all only in my right eye. (just an aside: regarding numerous scans and comparisons - they are only as good as the people reading them. I've had scans evaluated by one person who write three lines and says "nothing remarkable" and the next one writes a book and mentions every nook and cranny. Reminds me of "Where's Waldo" method of viewing anything. If all you're looking for is Waldo - you are probably going to miss a whole lot of other stuff.

    The question Iwrite asked - what treatment I'm having on my eye mets - the answer is none at this time. What had been previously discusses (proir to the biopsy - when we knew it was malignant) and wanted to determine its source to narrow down a protocol for type radiation.

    However... while we were waiting for eye biopsy results - a 2nd biopsy being done of my abdominal area - for what we now know to be Peritoneal Carcinomatosis. Source determined to be MBC as well.

    Not surprisingly - it places me into another (apparently smaller) "Unicorn" bucket.

    The treatment options for this has been equally daunting to sort through and due to it's prognosis - it has put the radiation treatment for my eye way down on the priority list.

    I've presently started on Chemo - Doxil which is sort of a one-size fits all until we can figure out what else to throw at it. If anyone has any experience with it - please let me know!

    P.S. I've changed my Halloween costume from being a Pirate (in case I was going to have to wear an eye patch) to being a Rubic's Cube - seems more appropriate since this one just seems to be a bit more of a puzzle. :o)


    · Share on FacebookShare on Twitter

Categories