It was discovered in a routine eye exam several years ago when she was in her early 20's and like you, we were worried. After it was checked by a specialist (and observed in her yearly exams), she was told that it is harmless (the shape is not suspicious and it hasn't changed in several years) and just needs to be watched for changes. I clearly remember our daughter telling us the same "worst case I could lose my eye" and how worried we were. I'm hoping your daughter's outcome is similar.

Hope this helps to ease your anxiety a bit...

My daughter is getting her physical trainer certification. She has never had a hint of any problems and this just really threw me.
Add to that, I'm in Arizona and she's so far away. Damn.....
I always told my kids that they were not allowed to be sick. I have been blessed.

As an ocular melanoma patient, I think it would be wise if your daughter gets better informed and definitely have the nevus monitored every 4 months by an ophthalmologist with experience in recognizing malignant ocular melanomas.

This is the real situation:

1 in 100 get a benign nevus and 5-6 in 1 million get a malignant nevus, but the latter grows originally usually out of a benign looking one.

Indications of 'change' are growth in size and changes in color like becoming orange or brown. Malignant nevi will usually grow rather swift, in months.

Also make sure that ophthalmologist uses not only dilation and visual inspection and a slit lamp, but actually makes an eye ultrasound, otherwise he will miss a lot and misdiagnose or discover the changes too late. Should he have a suspicion, a referral to an ocular oncologist is essential.

Especially at risk for the bad kind, as per statistics, are caucasians and blue eyed people.

Do not underestimate the 'monitoring' need. If one does not monitor and it ends up being a malignant tumor, mortality increases amongst others, with size and usually one discovers it too late to treat it with radiation in its smallest state unless one does monitoring.

As to comments that the worst case scenario of a malignant ocular melanoma is the loss of an eye, that is untrue. 50% Of malignant ocular melanoma patients die. There is no cure for when it spreads to the organs beyond the eye, just treatments that may extend life a bit, but usually not enormously. Some adjuvant (preventive) treatments are in experimental phases now.

So, given that end result when having the malignant kind, even if it is only for about 2,000-2,500 US patients a year, it is worth monitoring conscientiously.

KaryninMiami is is doing the right thing having her nevus monitored by an ocular oncologist (Bascom Plamer has one of the best, Dr Harbour, but you can find one in WA or OR state as well). Since she has it for quite a while, the doctor probably does it less frequent now than before, I would guess, but initially a 4 monthly monitor is advisable.

Feel free to email me if you have questions or need referrals to special patient forums and specialized doctors.

Peter L

Yay for DU!

It must have been scary to hear about that, especially since you're far away.

Now, I have trouble remembering which eye is real and which isn't, her artifical eyes moves up and down and side to side as she moves her other eye.

Her doctor was Nicholas T. Iliff, and he did nothing short of save her life.

http://www.hopkinsmedicine.org/wilmer/employees/cvs/iliff.html

Does age have any bearing on this condition?
I would donate my eye if I could for my daughter.

pigment-producing tissue in the colored part of the eye. It's a nasty business, but rare. We also see a fair bit of benign iris melanosis.

A "nevus" the doc called it, on the "back of my eye," seen after a routine dilation. The doc rechecked it after some period of time (several months?) and then again after more time (a year maybe?) and said if it hadn't changed shape by then it probably never would and I didn't need to worry about it. I never perceived it as a very big deal in the first place. Worst case scenarios are just that, so please don't worry!

I see an eye oncologist every year at Bascom Palmer- am very fortunate to live in Miami (there are some benefits to living here). The do a bunch of tests and take photos- I spend the morning there and after 3 years, it's not changed in size or shape or texture. I understand that it is more common then one would think- usually I'll bet it never even gets detected. It's like a freckle I've been told.

(I am now 12. Just kidding.)

I have had that since I was a child. Very, very rarely does it become cancerous. They will photograph it regularly. Who said she could lose her eye? A very irresponsible doctor it seems.

If you want to google try freckle or "bear tracks" (that's for more a bunch in a line).

I was told it's a birthmark, but others didn't confirm this.

PS Thanks for reminding me to check on it -- it's been quite a few years since I had it checked.

Eye Freckle And Eye Doctors Questions?
May 10, 2009 By admin Leave a Comment

So you have been told by your eye doctor there is a freckle in your eye. Should you be worried? It could be a number of things but the most likely are choroidal nevus (benign choroidal melanoma) or CHRPE (congenital hypertrophy of the retinal pigmented epithelium). Both conditions are usually benign and not a serious problem. They both need to be monitored to make sure they are not malignant melanomas.

Congenital hypertrophy of the retinal pigmented epithelium (also known as halo nevus) is a pigmented, well demarcated dark spot inside the back of your eye on your retina. Though size varies, it is convenient to think of it as about equivalent to the top of an eraser on a pencil. It is an accumulation of increases in pigment in the cells of the retinal pigment epithelium cell layer. This is hypertrophy, or an increase in the size but not the number of cells. The blood vessels underneath it atrophy also which results in a small blind spot which you are not capable of perceiving. While there are often changes over time; it is mostly a stable, inconsequential change and CHRPE can be thought of like a freckle on your skin. The difference is you can’t observe it for any changes like you can a spot on your hand, so serious conditions can advance past the treatable stages. On rare occasions a halo nevus can change from a normally flat surface and develop elevated nodules. The formation of these adenoma tumors are very rare but something eye doctors do check for on an annual basis. Usually no further tests are required other than eye exams with your eyes dilated in 3-6 months after first observation, then annually there after.

CHRPE also occurs in a form called “Bear Tracks.” Bear tracks are multiple dark spots in the back of the eye that look like little bear footprints. They frequently occur in conjunction with a condition called familial adenomatous polyposis and require further testing for colon and rectal cancer. This can be due to a dominant gene that is often seen to run in families as an predisposition to colon cancer. Bear Tracks may be seen years before the cancer occurs so they may be a valuable preventative sign to your optometrist. Bear tracks may require a referral to a Gastroenterologist Doctor for further evaluation. Not every patient with Bear Tracks will get colon cancer, but it is more likely if they are large, present in both eyes, and there are more than 3 or 4 spots in each eye. Isolated single CHRPE spots are not associated with Familial adenomatous polyposis or an increased risk of colon cancer.

in the 1960's (early '70's?). Fortunately, they caught it early. Unfortunately, she did lose her eye but they issued her a glass eye. Obviously this was DECADES ago and I'm sure they've improved treatments since then.

The worst case scenario is that your daughter loses her eye but lives a long, happy, healthy life.

I'll keep positive vibes out for you and your family.