LETTERS FROM FRIENDS (page 9)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
Jay:
I wanted to write to you to talk about a project that I am currently working on for my Masters Program.
I found your Losteye web site a few months ago as part of my research and thought it was very interesting.
Maybe I should first tell you about myself before I get into all this. My name is Amy and I had retinoblastoma at age 3 and lost my left eye. I currently do web design and a lot of usability studies on sites. I have a back ground in design from a private art college for my under grad degree.
Up until about a year ago I had never really met anyone else like myself in that they only had one eye. But last year, my best friend, who is also named Amy, suddenly developed a melanoma tumor in her left eye and ended up having to have it removed to save her life.
I had just got excepted into the design grad program to work on web design and usability, so Amy's loss seemed oddly enough, good timing in the motivation area of my life.
I had been thinking about building a web site to be able to talk to other people who had the same vision and vision loss as myself but had never done it. Now I was realizing how important that type of site could be since I was now Amy' s only source of information on what to expect for her new vision or lack there of.
So basically I started doing a lot of research and set my thesis project at producing a web site. I have several other factors that I am wanting to incorporate into the site and maybe develop it further than just those who have lost an eye. All that I still in the works and will be decided as I review my goals and refine my research.
The reason that I am writing you, is that what I was looking to create is somewhat similar to what I found your site to be already. I have found a few other sites that are close to yours also and I hope to contact those folks soon too.
I was happy to see what you had put together and to read the responses that people have sent you. It helped to confirm that this was a good idea and something that was needed.
I was wondering if you would be willing to talk to me a little more about your own experience and more about the site you have. I have been able to develop several new friendships from my research work and have enjoyed every minute of it.
It is always interesting to me to understand other peoples experiences and
point of views. It is very different how you relate to your site than myself
since I basically grew up knowing only this was of looking at things.
Please let me know if you are interested in talking a little more in depth.
Thanks and I look forward to hearing from you soon.
Amy
Dear Jay,
I want to thank you for your site. Your positive attitude is a true inspiration. My name is also Jay and I am 33 years old. I was a bit surprised your site did not discuss "suspicious" nevus at all. I believe choroidal melanoma is a choroidal nevus before turning malignant. I have a "suspicious" choroidal nevus that shows high risk for turning into choroidal melanoma. It was discovered while I was in college 10 years ago when I noticed my vision in my left eye wasn't as good as the vision in my right eye. My retinal specialist examines it every 4 to 6 months and so far it does not appear to be malignant but my doctor believes it is only a matter of time before it turns into a choroidal melanoma. My nevus is so close to my macula that radiation treatment will probably ruin my useful vision in that eye. I read at the University of Iowa website that 30 to 50% of people with choroidal melanoma die within 5 years even when the primary melanoma is treated! There seems to be a high incidence of it spreading to the liver or other organs even when the melanoma is caught early and treated. Thus, I am wondering if there may be value in removing my eye before it turns malignant. Especially since they think it will turn malignant and since a sizeable portion of choroidal melanoma patients metastasize even when the eye is removed. It seems in many cases by the time it is melanoma, it is too late even when the eye is removed right away. My thought is that if my eye is removed before it turns malignant, the cancer will not spread. It seems that in many cases by the time doctors realize it is melanoma, it may have already begun the spreading process. I have a few questions I hope you can help me with:
1. Have you heard from people who had a choroidal nevus that changed into melanoma? I didn't see any letters on your site that discussed that. Were you aware that you had a nevus before yours was classified as a melanoma?
2. Have you heard anything about the prophylactic removal of an eye that is at high risk for developing choroidal melanoma?
3. Are you aware of any stats about survival rate? I am aware of the COMS study that found the same 5 years survival rate for patients undergoing radiation as those undergoing enucleation (82%). I've researched for days and found no statistics about the long term survival rate. This combined with the fact that it didn't appear any of the letters on your site were from people who had their eye removed due to melanoma 20 years ago is making me think the long term odds aren't great. Have you ever heard of any one living 20 or 30 years after removing an eye from choroidal melanoma?
4. Are you aware of any stats regarding the odds of developing choroidal melanoma in the 2nd eye?
5. I've read a little about "double time" and the rate at which cancers metastasize. One article said some choroidal melanomas appear to spread years before they are treated (could this mean years before they are deemed melanoma and are still classified a nevus?). Are you aware of any facts regarding spread?
Thank you for your assistance,
Jay
My response:
Thanks for your message.
Yours is the first that I have ever really heard of the choroidal nevus. Nearly all of the people who write in to us (at least that are battling cancer and didn't lose their eye though, say, an accident or non-cancer cause), are or have faced choroidal melanoma, with the treatment being enucleation.
We have had letters from people who faced enucleation 20- or 30-years ago, so there are at least some survivors. My specialist (Dr. Robert Engstrom of UCLA's Jules Stein Institute) advised me along the lines of "If there are no negative indications of cancer a year after the enucleation, you're pretty much out of the woods." Of course, that doesn't keep me from taking semi-annual blood tests to look for liver enzymes, etc., or occasionally going to a body scan. But I think the medicos believe that if the melanoma was contained in the orbit of the eye, that the particular danger has probably ended.
But a couple of points: I doubt the people who do the plaque therapy would visit my website. Second, in my own case, the primary cancer appeared to be a few millimeters from the optic nerve. The fear was that the cancer would later grown onto the optic nerve. The cancer was so close to the optic nerve that the plaque therapy would have destroyed the eyesight in the eye anyhow, but left me with some risk of the cancer re-appearing and spreading. Notably, the post-enucleation biopsy of the eye revealed that there was another small patch of cancer that had started growing on top of the optic nerve that had gone unnoticed. Probably, if I had done the plaque treatment, the patch on the optic nerve might have continued to grow unnoticed, and spread down the optic nerve throughout my body -- with unfortunate consequences. So, in retrospect, my decision to go for the enucleation and "just get the damned cancer out of my body" was the right call.
I suggest that you contact Dr. Paul Finger of eyecancer.com who was VERY helpful when I was dealing with the issue of plaque vs. enucleation. And, in this instance, it would be very helpful to get second- or maybe even third-opinions.
Hope this helps. Don't hesitate to write, and after you have concluded your research please send me a letter about the choroidal nevus situation for me to post on the website. Odds are, there are others similarly situated to yourself who saw our website, but found nothing on choroidal nevus, and so never wrote to us about it.
-- Jay
Jay,
Can you tell me a little more about how your melanoma was first detected? Do you know how many millimeters it was across, long and thick? Were you having vision problems? You said your optometrist said something didn't look right -- did he noticed that after dilating? Did you go to Dr. Finger for a 2nd opinion? The measurements of my "atypical, suspicious nevus" have changed from visit to visit but the doctor said he didn't think it was growing (strange thing is it looks like sometimes it grew larger and then smaller and then larger again). I am very worried that they will not remove mine until it clearly demonstrates that it is melanoma (it is usually around 5.5 mm across, 6.5 mm long and 1.8 mm thick.) even though they believe it will turn into melanoma in the near future and it is on my macula and optic nerve. Different doctors have watched mine for 10 years and I have distorted vision, things are smaller and I see double vision in my nevus eye. It seems like they are scared to pull the trigger and just take it out until it does something huge like grow so big it detaches my retina. A woman on the eyecarefoundation.org bulletin board told me that she had 3 nevi in one eye and begged her doctor to remove her eye and he wouldn't!!! 6 years later it grew and was declared melanoma. If I were her I'd be very upset it was not removed earlier when she wanted it removed. Do you think they will force me to live with this ticking time bomb until it grows even larger?
