Ocular Melanoma

[plantationcatt]

After about a year of checking, my mother was diagnosed yesterday with ocular melanoma--she has a growth on her eye. She''s undergoing a CT scan today to see if it''s spread and will have surgery in the next few weeks. They''re going to put a small metal disk to attract radiation and she''ll be in the hospital for 5 days of treatment. Luckily, they''re less than two hours from Duke, who has a great treatment center. Ironically, my father was there in 1980 when his retina detached, so they''re quite familiar with eye procedures. Nonetheless she is devastated and very concerned. We''re praying and would appreciate your thoughts/prayers/PS dust.

As this is a rare diagnosis, anyone who has experience with this would be appreciated to respond (paging Girlrocks--I searched "ocular melanoma" and your post showed up but I couldn''t reply...how are things with your parents?) Suprisingly, my parents have a close friend who had ocular melanoma and had his eye removed a couple years ago. What are the chances they would know one another?

Thanks in advance for the support.

 

[somethingshiny]

I''m so sorry for your mom.

I do have some experience with this as I''ve worked in the optical field for several years. My info is down and dirty and I''ll only share if it''s what you want.


Please make sure your mom also has a CT to check for tumors in other areas.

 

[plantationcatt]

somethingshiny, I''ll take whatever you''ve got, even if it''s not pretty. She is having the CT today, but they think the chances of spreading are few. It has only grown about 5% in the past 6 months, and it''s not leaking. I hope they''re right. To add insult to injury, she''s allergic to contrast dye, so she''s on a heavy dose of prednisone. The CT is at 11 today, so we should know more this afternoon. We''re very lucky there is a doctor so close.

 

[somethingshiny]

My experiences are bad because obviously the good ones didn''t have to keep coming in...


It is very rare. (Retinoblastoma is the more common cancer of the eye.)Sometimes there are no symptoms. It is usually identified sooner if it''s close to the optic nerve because symptoms are more severe. Retinal detachment can also be caused by a tumor. It most often occurs in fair skinned, light eyed individuals. It''s most often seen in older individuals who don''t wear sunglasses with UV protection. The farmers in this area are our largest number of ocular melanomas. Chemotherapy is not considered an option for treatment. The first line of defense is laser and radiation therapy. In my experience, if the aforementioned treatments were unsuccessful, the eye is removed to varying degrees.

If the tumor is small and the treatments are successful, sometimes there is no loss of vision. If the tumor is large, the radiation required will often result in loss of vision and enucleation (removal of the eyeball) is usually necessary.

The tumors are most often located on the connective vascular tissue at the back of the eye. This seems to be the most survived tumor, but they are often the smallest. The tumors can also be on the eyelid, orbit, iris, conjunctiva, etc. It can also spread to those other areas.

There is a higher 5 yr survival rate if the melanoma is contained to just the eye. Survival rates when it spreads outside the eye are very low. Also, because it metastasizes to the liver, survival rates drop significantly at around 10 yrs.


Now, for my real life patient experience.

We had a few severe cases that I recall, but I''m sure the lesser cases wouldn''t have stuck in my mind.

The first was an older lady who was diagnosed in her 40''s. She had her eye removed as well as part of her orbit and eyelid. She had a "glass" eye for 20 years and functioned normally. I don''t work at that office anymore, but last I knew she was doing well.


The others were old farmers. Sometimes they''d come in presenting with a loss of visual field, or in one case, a bulging red eye. These men had not had regular eye exams and their tumors were large. As I recall, one gentleman had extensive tissue removed and ended up having melanomas on his nose and lips too. However, he survived past 5 yrs (and then again, I left the office so I don''t know how long he''s lived.) The 2-3 other men didn''t make it 5 yrs due to the cancer spreading to larger organs.

In cases where the eye has been removed, most patients thought they looked okay with their cosmetic rehab. And, most were happy with their vision with just one eye and were able to function normally. (this is from all of the enucleations, not just the ocular melanoma enucleation.)



I''m so glad you have access to a good dr. My prayers are outgoing for your family.


I know this is really long, but I wanted to touch on everything.

 

[plantationcatt]

Thank you so much for your honest and lengthy response; I appreciate you taking your time. She didn’t have any symptoms at all, just when she switched ophthalmologists they noticed a spot and sent her to Duke right away. They’ve been watching for almost a year and couldn’t see any changes, but are now positive it’s ocular melanoma. I can see why farmers are more susceptible… ironically my dad has lost vision in one eye from being a farmer and having a piece of combine metal penetrate his retina—while my librarian mother has ocular melanoma. The tumor is on the medial aspect near the macular…that means more to you than me, I’m sure. I can’t even find a decent graphic on the internet that shows the medial aspect. Good news is that the CT scan showed that it has NOT spread, which is wonderful news for now. They will do surgery on the 24th to install the plaque for radiation, then five days of radiation, then removal on the 29th. They will then send her home for two weeks to do basically nothing—she’s supposed to be in a dust and mold-free environment. That will be hard since she lives in an old house with carpet in her bedroom, but I offered my house. We’ll see. She’s less scared about the outcome of cancer now that she knows it hasn’t spread, but is “apprehensive” about the treatment.
As we are preparing for surgery, she asked that I make a list of things to do beforehand to prepare. Could you think of anything that needs to be done? We are obviously going to get the house cleaned, and the ladies in town are coordinating meals….
Again, thanks for your advice & prayers.

 

[Girlrocks]

I am so sorry to hear about your mom''s diagnosis. Interestingly enough-I am with my mom for a 3 day follow up appointment right now at Will''s Eye Institute in Philadelphia.

My mom noticed a bit of blurred vision at the end of September. She went to the eye doctor where the tumor was detected. She was really lucky to have it caught so early as there are usually no symptoms and the blurring was caused by some minor bleeding due to the tumor causing her retina to detach a bit.

We went to Will''s Eye Institute the beginning of October. They are world renowned for their treatment of this disease. I would highly recommend a visit there. The place is amazing.

Her CT scans at the time showed that the tumor had not spread. She had the disc attached to her eye and then had to stay quarantined in a special after-care facility for 4 days. They did the surgery on a Thursday, she stayed over the weekend and removed the disc on Monday and she was home that afternoon.

The surgery-she was just in a twilight-the procedure took maybe 45 min to an hour. The disc itself looks like a penny with rice stuck on it-the pieces of "rice" are radioactive seeds, so the disc itself is the radiation. Then they put a lead patch over the eye. The patch is very bulky. My mom said it was minimally uncomfortable (I know how I feel when an eyelash is in my eye, I can''t imagine a penny with rice stuck on it!). They prescribed pain medication but it made my mom nauseous so she was fine with just extra strength Tylenol. The worst part for her was going stir-crazy in the room for 4 days!! The surgery to remove the disc is just as quick as to implant it.

The eye stayed patched for 2 full weeks. When we removed the patch, unfortunately my mother was completely blind in that eye and now 5 months later, unfortunately she still is. Most people retain vision with minimal vision changes after the procedure. They aren''t quite sure why my mom is blind-at first they thought it was because there was blood in the eye, but it should have been reabsorbed by the body by now.

She had a follow up appointment in December which showed that the tumor had not shrunk yet, but that is not uncommon.

Now we are 5 months out, and I am sitting in the hospital as I type. She has 2 day follow up appointments every 4-5 months now at which time they will do full body CT scans to see if the cancer has spread. Also we need to find out what to do at this point-what is the status of the tumor, is her vision expected to return, etc.

This is a very aggressive cancer. She has to have full body CT''s every 6 months for 5 years, blood work every 4 months.

The statistics say only 7 out of a million people are diagnosed annually, however, my aunt (not a blood relative of my mom''s) also had this same cancer about 7 years ago and had the eye removed. She has since had 2 recurrances (breast cancer).

Good luck to you-please feel free to ask me any questions-I don''t mind!

BTW-my dad is finished with is treatments (thank god!); he goes every 6 months for blood work but so far he is in the clear.

 

[Girlrocks]

Regarding your question of "what can we do"...

Be prepared for your mom to be angry and upset once she gets home. It''s very disorienting to only be able to see out of one eye (even if only temporary) and that really got to my mom after a while. Also, she couldn''t bend over AT ALL, so we had to tie her shoes, etc. We had to wash my mom''s hair in the sink for the first 2 weeks and my dad had to help her wash her feet in the shower (LOL!). After the bandages came off she had to put drops in her eye that kept it dialated, so bright lights are a problem and her eye was constantly tearing. I don''t know how independant your mom was before, but my mom hasn''t been able to drive since the surgery so there have been times where she has been depressed. My mom loved to read and do word puzzles, so that has been a struggle to get acclimated to with one eye. Try to stand on her "good" side when talking to her-I remember at Thanksgiving, I was sitting on my mom''s right and I was trying to pass her the gravy but she couldn''t see it and I was burning my hand!!

 

[somethingshiny]

Ditto girlrocks preparation post.

There will be no bending or stooping-- probably not even leaning over a book. Have a comfy place prepared where she can lie back a bit to keep any pressure off the eye. If your mom has a problem with touching her eye, she''ll need help with eye drops. The dr will instruct you (or whomever) on the administration of any drops. I am surprised that they''re sending her home during the first few days. I would stress to the dr the area that your mom lives, the age of her home, etc. just to make sure he understands where the recovery will be taking place.

As I said earlier, the liver seems to be the preferred site for the cancer to spread. Your mom should have CT scans regularly. The liver enzyme tests usually can''t catch the cancer as early as a CT. And, of course, she''ll have frequent eye exams for the rest of her life.

Possible good news---The "medial" just means the part towards the nose. If it''s close to the macula but showed no signs, it''s probably very small. Also, since the dr wants to do radiation instead of enucleation indicates that the tumor is small. Since it''s contained at this point and probably small, she has a better chance of making a full recovery with no vision loss. It sounds like she is in the first stage of the melanoma which greatly reduces the risk of metastasis.

As far as ocular melanoma goes, this is the best you could hope for.



girlrocks~ Lots of recovery dust for your mom!

 

[plantationcatt]

Girlrocks, I hope & pray everything went well with your mom''s follow up. Her treatment sounds exactly like what they''ll do with my mom. What did she feel up to doing in the hospital room? All we can think og for entertainment is books on tape... They''ve told her she doesn''t have to wear the patch for the full two weeks--maybe because she hasn''t had bleeding or detachment? Good to know it could take a while for the tumor to shrink. My mom also loves to read (she''s a librarian) so it will be a huge adjustment. I chuckled at the burning gravy, only necause my dad''s been blind in his right eye for 30 years and Mom still hasn''t learned to stay on his left! I''m so glad your father is done with treatments. Thank you so much for your input. I''ll keep yall updated and keep your parents in my prayers.

somethingshiny, Yeah, they''re sending her home for recovery. I guess I overstated the "old house" thing--it''s well maintained, it just has carpet and is sprawling and has more dust than my house that''s all laminate floors and smaller. She has help lined up to clean before she gets home from the hospital and while she''s recovering. She doesn''t know yet how often her checkups will be, but I''ll make sure they''re CT scans. You''re right, the tumor is small and they caught it early, and the doctors are optomistic. Thank you for your help.

PS is such an amazing resource.

 

[Girlrocks]

Unfortunately my mom''s follow up didn''t go so well. She had a lot of pressure in her eye (35) so after the first day they gave us some drops to put in her eye. The second day her pressure had gone down to 4 so we have to continue with the drops. They don''t think her vision will return-the radiation does a lot of damage to the optic nerve. At this point they are going to do everything they can to save the eye but her vision will not return. She was very upset about that.

The tumor original measured 8.5mm; after 5 months it has reduced to 6mm so it is still there. It is still bleeding, so they are trying to decide now whether to carturize it or just let it be-they don''t want to go in and do too much for fear that some cells will break off and travel elsewhere in the body. They prefer to just leave it alone. We have to wait and see on that one still.

I HIGHLY recommend that when they insert the plaque, they take a sample of the tumor and do genetic testing. It''s quite expensive and takes a few months to get the results, but it will determine whether the cancer is a type that is likely to spread or likely to stay localized. This is very valuable information for future expectations and treatment.

My mom''s genetic testing results were not too good. The type of cancer she has will likely spread; actually she has a greater than 50% chance of metastacizing within 5 years. That will change her treatment and follow up now. She has an appointment with a oncologist in PA who specializes in this type of cancer who will do CT''s regularly, blood work, physicals, etc. The most likely place of the cancer spreading is the liver or lungs.

My thoughts and prayers are with you and your family over the next week; please come back and update-I will be thinking about you. This cancer is so rare it''s actually nice (under unfortunate circumstances of course) to find someone who''s in my same shoes.

 

[Lanie]

I came on here to read about plantationcatt''s mother (she mentioned it in another thread) and to wish her mother well, and I read about your story, Girlrocks. That is so sad and scary! I don''t know anyone with this situation, so no advice here, but just wanted you ladies to know I''m thinking about both of you!

 

[plantationcatt]

Girlrocks: I''m sorry to hear things didn''t go as hoped. I will certainly remember yall in my prayers. Mom asked about genetic testing and since it''s not leaking, they''re afraid to disturb the tumor. Makes sense I guess. It is certainly nice to have someone to empathize with.

Lanie, thank you for your thoughts.

We''re headed for her surgery tomorrow (we don''t know what time yet), BUT my husband and I are trying to get pregnant and I won''t know for sure if I am until later this week when my period is late. Brachytherapy doesn''t allow visits of pregnant women at all, and no one knows we''re trying and I''d like to keep it that way if possible. Help?

 

[Girlrocks]

I would suggest that you pull the nurse aside and ask her. There was NO possibility that I was pregnant and they didn''t want me within 8 feet of my mom.

Good luck with the surgery.

 

[plantationcatt]

Girlrocks, still thinking of you and your family and hoping things will go well as time goes on.

My mom had her second surgery this morning to remove the plaque, and that went well. She''ll go home tomorrow and we''re waiting to see what kind of restrictions they put on her while she recovers. She felt "fine" (in comparison to how she thought she''d feel) most of the week, just tired and bored. They''ll know in a couple months whether the treatment worked, but didn''t disturb the tumor to test because it hadn''t yet leaked or spread. The doctors and staff were WONDERFUL, very friendly and had a positive attitude. I think the hardest part of the week was being in the waiting room and seeing little kids that were going back for surgery. As an aside, I started my period (sorry if TMI) and hence am not pregnant. But, my mother being a worrier that she is, said that since my DH and I are "of childbearing age" that she wanted us to stay at the edges of the room, and only let us stay in there for small chunks of time before shooing us out the door. My dad, who''s definitley not of childbearing age (well, not in our family!) at 62, stayed with her except for meals and at night. We all stayed in a hotel across the street. She didn''t even mind the hospital food! They do 6-7 ocular radiation patients each month at Duke approximately, and they all stay on this one floor, so the nurses had lots of experience. There were two other patients that had the same surgery the same day she did, and she had visited with one of them and exchanged information. There''s nothing like empathy. Apparantly of the three, mom had the least radiation amount, so that seems good.

Thanks again for being someone who can relate. I''m thinking of you.