Malignant melanoma of the choroid in the eye

Hello twocents,
I was diagnosed with choroidal melanoma in November. I had radiation in December in Boston. It is definitely emotionally shocking, to say the least. I have been seeing a retinal oncologist and will begin seeing an oncologist this week. I'll also see an integrative doctor at the cancer center here. I personally believe diet and excercise plays a very big part in my outcome, and I am taking steps to change my diet and eating habits.and exercise habits. I am happy to communicate. Feel free to reach out.

Thank you for the welcome. I am so glad I have found this site.
It was by pure accident that my Melanoma was found.

I took my then 3 year old daughter ( after we moved back to Australia) to a skin specialist as I was directed by our LA Paediatrician to have her cappuccino birth mark regularly checked.
I just happen to say to my daughter’s doctor, on my way out the door, would you mind taking a look at this for me!

He sent me straight to a specialist who took biopsy that day!

Biopsy came back and specialist called me at home on a Saturday evening and asked me to see if I could have the girls (my two daughters at that time. a single parent ) watched by neighbours while he spoke to me about the results.

Specialist had me booked for surgery on the following Monday.
As previously mentioned here, I had noticed this spot on my leg below the patella for just over 4 years but never thought anything about it while in LA.
The spot as I call it was no more than the size of a Dime.

I now have a 8” scar that is hardly visible.
Stage two Tumor. I cannot remember the depth that is measured etc…
No Chemo No Radiation. Just check ups initially every three months for a year. Then moved to twice a year.

I have been back to this magnificent Professor at a major Melanoma Centre called The Poche Centre in North Sydney if anyone here fro Au.

I have since that date in 1996, had three more melanoma’s.

My back is a road map of large scars with removal of one lymph node, and thankfully not spread.

I am now dealing with a very angry inflamed red raw Actinic Keratosis that appeared on my breast. Punch Biopsy done and now calling my Professor to see what indeed he would do, compared to my GP who can remove and send away for further Biopsy.

Only just saw my twice annual Dermatologist on 9/2 who said when I pointed out to him the red scaly 5mm inflammation, ‘Yes that’s nothing’ !!

With my History ‘ Nothing’ in my opinion, requires another set of eyes. !!
I hope people challenge/question/research opinions if your not comfortable with what you feel is off kilter.

Thank you for reading everyone as as we say in Australia
‘Slip Slop Slap’

Slipping on a Shirt
Slopping on SunScreen
and Slapping on a hat.

We also have a Country Wide regulation for all schools.

No Hat, No Play.

Welcome, @ozgal, here are some global stats for skin cancer.
- Skin cancer statistics https://www.wcrf.org/cancer-trends/skin-cancer-statistics/
- Global Burden of Cutaneous Melanoma in 2020 and Projections to 2040 https://pmc.ncbi.nlm.nih.gov/articles/PMC8968696/

Australia has an incredible public health awareness related to skin cancer prevention and early detection. Thank goodness your melanoma was discovered upon your return home.

Ozgal, do you have ocular melanoma or where was the tumour discovered? What treament will you or have you had?

This is directed to the moderator mainly, but other members are welcome to give their opinion.

I used to live in the USA and on a trip back to my homeland of Australia I found that i had stage 2 Melanoma tumour. I had been looking at it for 4 years so i was extremely lucky. There was very to non existent media or general medical awareness in Southern California ( the home of the bronzed body) but huge awareness in Australia through medical campaigners etc.

My question is : seeing Australia is the melanoma capital of the world, it would be interesting to have a basic survey of people in the cancer/skin cancer forums to advise A) which Country they are from and B) skin colour type.

thanks for reading.

@jlstaloch In case you are interested, in the Ken Burns documentary about Mayo Clinic, one of the patient stories they followed was about melanoma in the eye of a young woman who was also pregnant at the time. She was very concerned about having cancer or possibly loosing the baby. Spoiler alert- she did just fine and her eye was saved as well as the baby . I have seen the documentary on DVD for sale in the gift shop at Mayo (lower level Gonda building) and at St. Mary's hospital. It has been a few years since it aired on PBS. It may help you to see and hear another patient talk about facing similar diagnosis and treatment. There are several other patient stories too as well as the history of Mayo Clinic and advancement in medicine in the last 150 years.
https://www.pbs.org/show/the-mayo-clinic/
My husband had melanoma on his hand, so we are pretty vigilant about follow up screening, and we were also very lucky it was caught in time. I presume you will be following up regularly as you get past this treatment with cancer screenings. There is a genetic test called a Castle Test that predicts risk for cancers, and my husband scored fairly high risk on that test. His treatment wasn't at Mayo, but I am a Mayo patient for spine and ankle surgery. You'll be in good hands and taken care of with compassion.

I did see the post from @sszantay and was encouraged. That is where I am at also. I have trust in God to see my family and I through this. That is the only explanation for why I got to the eye doctor when I did and why this was found early as I have zero symptoms.

I took my 15 year old son mountain biking yesterday which is something he’s been wanting to do all summer and we had a great time. Today will be spent probably enjoying time with my other son who is 12. My wife and I will be leaving for Rochester on Sunday morning and the plaque will be placed on Monday and removed Friday. My wife will be with me the whole week as we live over 600 miles from Rochester. We rented a VRBO which will be considerably more comfortable than a hotel room. We are just looking forward to getting this next week done with and get back to our normal routine.

@jlstaloch, you must be so grateful and relieved that you doctor in Fargo recommended getting the spot checked out. Early treatment has a higher success rate.

I hope you saw the helpful post from @sszantay and their wise counsel about keeping the worrying in check. Naturally, we all know that is harder said than done. Improvement may take time.

You asked about things to do or consider between now and your appointment on Monday. My first tip would be to do something enjoyable this weekend.

Do you know how long you will have the radioactive plaque on your eye? Will your wife being staying in Rochester with you during this time?

I was diagnosed with Choroid Melanoma in April, 2023. I was treated with Brachtherapy (3 day span) My initial scans were clear . I saw the Dr every 3 months with Liver Uktrasounds every 6 mos. My tumor size did NOT shrink until the May, 2024 checkup. As you can guessed I was distraught for 12 months that the radiation treatment showed no improvement in tumor size. My hope is to anyone going through the uveal melanoma diagnosis is that don’t give up hope for improvement because I am witness it took a very long year. I am promoted to 6 mo Dr check ups with B scans and will continue to have Liver Ultrasounds every 6 mos for the first 5 years from original diagnosis. I wake up every day reading my daily prayers and then get moving to enjoy every day that God and my Doctor gives me. One Day at a Time!

I hadn’t been to the eye doctor in 14 years after I had LASIK done in 2010. This spring I went to my regular eye doctor and she told me I had a freckle in my eye and should get it checked out, I saw ophthalmologists in Bismarck, Minot, and Fargo who all told me it was nothing, just a Nevis, but the doctor in Fargo recommended I see a specialist at Mayo in Rochester “just to be sure.”The ocular oncologist I saw I diagnosed me with Coroid Melanoma in my left eye. She said it was caught early and all my blood work and CT scans appear clear. I am scheduled for Plaque Brachytherapy in Rochester on August 5th. Which my doctor says has a 95% chance of success. Being only 40 my wife and I are hoping this prognosis and outlook is correct.
I guess I am looking for advice on things to do or consider during this time.

My sister was diagnosed with melanoma in the back of the eye. The diagnosing docs recommended enucleation or removal of the entire eyeball. I told her to get another opinion by a top expert. She went to a clinic famous for treating eye cancers, and within 5 minutes they told her it was a freckle. They said they saw this particular misdiagnosis multiple times every year. Of course, if there's a larger tumor, it is much clearer what you've got. For smaller alleged eye cancers, find the very best docs and hospitals for another opinion. In my sister's case, it was the third opinion.