› Forums › General Melanoma Community › Diagnosed with Type 2 Uveal Melanoma in Right Eye
- This topic has 4 replies, 3 voices, and was last updated 1 month ago by 12Joshua.
Hello MPF community,
- February 11, 2023 at 1:15 pm
I was diagnosed with a melanoma tumor in my right eye on November 9th, 2022. The day started with a visit to the optometrist at my local Costco in Bozeman, MT and things moved rather quickly 2 hours later to a visit to a retina specialist who informed me I have an aggressive tumor in my right eye. The cold delivery of this news was bit of a punch in the stomach to say the least… but I recovered rather quickly from the initial shock and immediately switched into “It’s go time” mode as I was informed by my retina specialist there was insufficient care for my condition in the state of Montana.
Luckily, my parents live on the SW coast of Florida and miraculously had connections to a fantastic ocular oncologist practicing at the Bascom Palmer Eye Institute at the University of Miami. Within 4 days, I took care of immediate affairs where I had close friends take care of and manage my home etc. and I set off for Florida with no time frame of when or if I would be returning. 3 months later I’m back home in Montana, less my right eye and with a wonderfully crafted prosthetic in place.
My initial CT scan (November 16, 2022 – chest to pelvis, performed just before my enucleation surgery) results were negative for any detectable metastasis. The tumors, yes plural, i found out I actually had 3 in my right eye, were removed with my eye via surgery. One tumor was rather sizable, measuring 14mm. The nature of this cancer has been described many times as “aggressive” from my oncologists. My pathology results reveal my tumors were Type 2 Uveal Melanoma, which has a 70% chance of returning (shoot!, not the news I was hoping for). I had great care with my ocular oncologist at Bascom Palmer and he has since passed me onto an oncologist at Sylvester Cancer Care Center at The University of Miami. My current oncologist luckily specializes in my rather rare form of Melanoma. I’ve been told only 2,500 people per year in the US receive an ocular melanoma diagnosis (or perhaps they meant specifically my type of uveal/ocular melanoma, too much information to digest sometimes). My team informed me my chances of getting this diagnosis was 1 in 6 million… My mother then said she always knew I was special 😉
I’ll be on a schedule of MRI (liver) and CT scans (lungs) every 3 months for the next 2 years and if I can hopefully stay cancer free for that time period I will then move on to a schedule of scans every 6 months, if good luck is with me. I don’t have a clear idea of my treatment if the cancer returns, my understanding is we cross that bridge when we come to it depending on how and where it shows up.
Anyway, regarding my mental and emotional state; I’ve lived a charmed life for 57 years with only a few substantial obstacles (if I would even call them that). I’ve lived my life exactly the way I have wished and in most ways it’s been a lovely dream where I followed my heart and it’s lead me to beautiful places both in spirit and physical place. It all has been an adventure and I’ve embraced life fully and have enjoyed it to my fullest. I always thought my ride on this golden road would just continue on in its giving way as it has all along, until I reached my final rainbow and said “so long, folks! I love you all” …and perhaps that actually IS the case, even with my diagnosis. I guess I just always thought I wouldn’t be met with something as heavy and serious as this… then again, don’t most of us think that way?
Soooo… I understand and accept this recent diagnosis. Accepting the fact its not quite the same golden road I was on and the reality of it shines a very different perspective on my time here and perhaps how much I have left (which I am adjusting to as I do my best to embrace and accept this new reality). I’ve always been grateful for the moments I have and for those who I love and get to share those moments with. I feel extremely lucky I’ve had this grateful perspective even before my diagnosis, which has helped me adjust to the recent news immensely. But now the reality of my diagnosis has forced a sharper focus on the value of my/our time and how it is spent, my self care, my openness, sharing, showing and verbalizing love, being grateful for the love I/we have.
and I believe, most of all… forgiveness.
I’ve never joined a support community before, but lately it has been suggested by a few of my friends and Dr’s that maybe I do. So here, I am… adjusting, hoping for the best and looking for a better understanding of my rare form of cancer and hopefully how to learn and face this new road ahead the best I can.
I’d really love to be in touch with others who have the same Type 2 Uveal Melanoma Diagnosis so we can share specific experience and information.
Hoo boy, I understand that’s a hell of a longwinded 1st post! … I have a lot to share I guess.
Sending all my best to those who are struggling ((((<3)))) peace and love, Joshua
EdwinParticipantI hope your melanoma never comes back. I had skin melanoma in several bones and received several PET scans and one brain MRI. I received immunotherapy and my melanoma is gone. I now have a PET scan yearly. You might ask about a brain MRI, PET scans and immunotherapy.
- February 11, 2023 at 5:10 pm
I checked in with my oncologist and he said brain scans aren’t advised for my type of melanoma. Brain scan monitoring with skin melanomas is more the typical practice (that’s my layman translation at least).
- February 17, 2023 at 4:46 pm
Are there any people on this forum dealing specifically with Type 2 Uveal Melanoma? I’d love to connect with some people in the same boat as me.
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