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Chroidal melanoma (Eye Cancer)

melton8
Posts: 2
Joined: Mar 2003

Does anyone have this? I need some one to talk with about the anxiety/fear that I am going through, in dealing with this...Is anxiety/fear common?

angelcake48843
Posts: 3
Joined: May 2003

to melton8
Yes I had a very large tumor in my left eye.
I know what you are talking about with the anxiety and fear. On august of 2000 I had gone to my regular optomitrist to get new glass. I alway's get my eyes dilated. So to make a long story short the found a large 10mm in my left eye.
The only option they gave me was removal of the eye. Two week's later the tumor had grown to 15mm.
I am doing very well!!! Of course their is the follow up test. But after almost 3 year's I am still Cancer free.
I'm not saying it was easy. I had to learn alot of things over. Because you will lose your depth perception and with losing my left eye I had to learn how to drive again.
But it takes time and the Love of family and friend's.
I hope all is well with you. What have the Dr's decided to do? I know they sometimes they can use chemo or some other type's of things.
The depression is their I know but time will heal.
I actualy can say I've been there.
I have a prosthic eye. Every body say's it looks so real. I hope I've helped you out alittle. I know it's not easy but you can do it. I Hope you pray because I do! And it helped me alot. Please write me back because you are the first person I've been able to find that has this type of cancer. Maybe we can keep in contact.
Thank's and may God Bless!
Angelcake48843

aries75
Posts: 3
Joined: Apr 2003

A former colleague and friend of mine had this cancer (in her case, it was the right eye, and she also had to have it removed).

I don't know if you're familiar with this website:

http://www.losteye.com

...but it might be of help to both of you. The man who runs it also lost an eye to choroidal melanoma, and there's a lot of information there on how to cope with all the issues involved.

angelcake48843
Posts: 3
Joined: May 2003

Thank You!
I Will check this web site out.
I have also been trying to find help to cope with this.
thanks again
angelcake48843

AuthorUnknown
Posts: 1564
Joined: May 2006

To all of you: I had laser treatment on left eye
melanoma at Wills Eye in 1998 which seemed to have
gotten it all, but in 2000 they had to radiate it
with cobalt for 5 days. It worked fine until last
September 2004, when a technician for a local
opthamologist who was supposed to check me half
way between the long distance trips to Philadelphia, put eye drops in my eyes that blinded me for 3 days! Tthe sight never came back
because the retina is shot. Now I have just been
diagnosed with melanoma in the lung and Wed I find
out what the treatment is to be. They were very
surprised to have the pathology report be melanoma
because the cancer in my left eye is all dead.
I know what you mean about scared and depression,
because I am going through it too, but trying to act like I'm doing well because of my family. Good luck to you all. And have you ever done a
survey in the waiting room of your oncologist to
see which eye is affected. We have found more left eyes affected where I go. Isn't that weird?

suppo

AuthorUnknown
Posts: 1564
Joined: May 2006

GretnaGranny;
09-15-05
To all of you: I had laser treatment on left eye
melanoma at Wills Eye in 1998 which seemed to have
gotten it all, but in 2000 they had to radiate it
with cobalt for 5 days. It worked fine until last
September 2004, when a technician for a local
opthamologist who was supposed to check me half
way between the long distance trips to Philadelphia, put eye drops in my eyes that blinded me for 3 days! Tthe sight never came back
because the retina is shot. Now I have just been
diagnosed with melanoma in the lung and Wed I find
out what the treatment is to be. They were very
surprised to have the pathology report be melanoma
because the cancer in my left eye is all dead.
I know what you mean about scared and depression,
because I am going through it too, but trying to act like I'm doing well because of my family. Good luck to you all. And have you ever done a
survey in the waiting room of your oncologist to
see which eye is affected. We have found more left eyes affected where I go. Isn't that weird?

suppo

jeanjewing
Posts: 4
Joined: Apr 2010

I also have had radiation patch on my eye after being diagnosed with a choroidal melanoma. Now I have lost my eyesight. please email me or email me on here..thanks, I do feel quite alone, and no one really understands.thanks.. jean.johnson@charter.net

rosiepete
Posts: 1
Joined: Jun 2010

jean, I was just told I have cancer behind my retina on may 28 2010. I was referred to the mayo clinic in Rochester. I am having surgery on June 21 to have placque radiation sewed to my eye and it will be left for 5 days and then I go back to surgery and have it removed.They say a 90 percent chance it will kill the cancer.I am a 62 year old female who like you am feeling very depressed as they tell me I will lose my eyesight in that eye also. Would love to hear from you. I live in mimmesota rosiepete

nounedeux
Posts: 1
Joined: Jul 2010

RosiePete, I hope you are doing fine now.
I am a 34 year old woman. I was diagnosed with choroidal melanoma June 24th 2010. My tumor is too big for radiation and we do not want to risk the cancer spreading while we wait to see if the cancer is gone. I am having my right eye removed on Tuesday July 6th at the UW Hospital in Madison WI. My surgery will be exactly 2 weeks after my 1st eye check. My vision in my right eye was very blurry. The 1st doctor I saw referred me to another specialist because my retina was detached and I needed surgery right away. The 2nd specialist said that my retina was detached but there also was a tumor in my eye. Two days later, I was told it was cancer. I had never heard about eye cancer. The specialists and surgeon I saw are pretty confident in the surgery. I had the blood tests and X Rays, and the cancer did not spread. I feel lucky about that. It still feels surreal, like it's a bad dream and I'm gonna wake up and my eye will be fine. I am glad to be surounded and family and friends. It helps so much.
I am trying to enjoy my last couple of days before surgery. My husband does all he can to take my mind off of this.
I too was depressed and mad after hearing the news. After a couple of days, I decided to focus my energy on fighting this thing and keeping positive thoughts.
I will beat this!

LaLa6197
Posts: 2
Joined: Dec 2010

I'm also a patient at Rochester. It was in November 2010 when I had surgery and then radiation. So far I'm doing fine. The tumor was in the front of my eye so I'm able to see but not good enough to read. I'm watching my diet and trying to just stay healthy. I'm going to return for a 6 month checkup and hopefully everything will still be fine. I wish that I could find someone with "Monosomy 3" but this is even more rare than the eye cancer itself. I live in northern Minnesota and I'm 58 and am trying to stay possitive that this won't end up in my liver. I welcome all the prayers I can get.

moonlady85
Posts: 1
Joined: Mar 2012

It has been a year since I had my left eye removed,I did not get a Fake eye because the cost is crazy and you have to get them replaced every 5 years.I just would like to find a job with one eye it will be hard but life goes on.I do not have cancer anywhere else that I know of I feel fine and with no money can not afford to get the blood tests and x-rays.I am the first one in my family to ever have any kind of cancer and was glad Doctor told me smoking had nothing to do with it.I just wear one of those eye band aid type patches on my left eye.I am 55 and would love to be good for at least 30 years or more.

brutz
Posts: 7
Joined: Mar 2012

I am new here-- My husband has been 3 years with CM. He is a Vietnam Veteran and we found interesting stats regrading Vets and this cancer...
as you all know the data from all sources say it is so rare..5-6 in one million...or about 1400 a year.
But we have information from the Freedom of Information Act that follows Veteran hospitals...
the rate was much higher than 1400 a year for Veterans alone----
the rate was 1900 Vets treated in the year 07, about 2100 treated in 08, about 2200 in 09 ,about 2050 in 2010 and about 1600 in 2011.
These numbers are not duplicated. These are occurances. The numbers are frightening for veterans.
I am looking for fellow veterans of my husband with this cancer.. Please contact me.
My husband was a pilot..he owned his own airline. He no longer flies. He now gets 50.00 a month in VA benefits. I know he is not alone. Please contact us.
Thank you

jamesviernes
Posts: 1
Joined: Mar 2012

hi maam

i was recently diagnosed with choroidal melanoma while active duty in the navy, i am 24 years old and a Qm3 in the navy

i just had my radiation therapy (rad patch) last month, as of i am doing ok

my email is jamesviernes87@yahoo.com, if you would like to be in contact with me

brutz
Posts: 7
Joined: Mar 2012

James- much luck to you. You are a very young man. I thank you for your service to our country as well.
I am looking into the high rate of incidences of this cancer among veterans. You are not yet a veteran but you are certainly adding to my list of our high rate of military identified with this rare cancer. My husbands friend (also a vet) did well with his radiation. My husband had a much larger growth and needed the eye removed. May I ask where you have been stationed during your time in the military?

If there are any other veterans or active duty I would love to hear from you.
Continued luck to all of you.

brutz@pasco.k12.fl.us

jesse515
Posts: 6
Joined: Aug 2012

I am a vietnam vet and My dr is ssspects chroidal melanoma in my right eye,

one more ultra sound to confirm to be next week, I am in shock from this diagnosis

of something I know very little, I am 66 yrs old and thought I was fairly good shape

I need help and any comments or encouragement out there. I am in state of Alabama.

I would love to here from anyone. jesse515

brutz
Posts: 7
Joined: Mar 2012

Hello Moonlady85

yes the fake eye is expensive. My husband did get one...he is a veteran though so the VA helped him out. i thought he would wear a patch he surprised me. But what his Dr. did say is that this eye of his can last much longer than 5 years. However his Dr. also said that women tend to get new ones more often. He needs to take it out and clean it. BUt as long as his eye lids are tight enough to hold it in he will remain with the same eye. I wish you continued luck in your job search I feel as though you may need to ask in the event you are not employed as to your lack of obtaining the job. You know they can not discriminate based upon your physical appearance.

jesse515
Posts: 6
Joined: Aug 2012

I would like to know more of your husband experience and what was his diagnosis

jesse515

jesse515
Posts: 6
Joined: Aug 2012

I would like to know more of your husband experience and what was his diagnosis

jesse515

brutz
Posts: 7
Joined: Mar 2012

I am sorry for the delay in my response. My husband was 19 when he went to Vietnam in November of 1970.
His unit was F Troop 8th Air Cav, American Division.
He was an Aircraft mechanic/crew chief OH-6, electrical and weapons, He fixed everything electrical on OH-6, UH-1H, AH1G ,He flight tested all electrical weapons systems and SCAS systems on AH-1G.
He was in Chu Lai for 1 month and remainder in Quang Tri.
He was in Vietnam for 366 days total. He left when he was 20.
He was in Agent Orange territory.
He is/was a pilot, he was diagnosed with Choroidal melanoma 5 years ago...being a pilot he was very in tune to his vision..the change came quickly. Nothing was suspected at any of his regular eye exams or physicals. He had an exam and they were concerned, the specialists confirmed the cancer. He had plaque radiation and chemo. The tumor did not shrink. He had his eye removed in May 2012. Many adjustments to be made. Please tell us your story. We are looking for fellow veterans as there are so many out there according to our data. There were over 2000 identified in 2010 alone, while statistically there would be about 115.
Please email me:
brutz@pasco.k12.fl.us

gjstark
Posts: 10
Joined: Oct 2009

Hi, I was just diagnosed with a tumar under my retina by an eye doctor. I understand exactly what you are feeling. On Tuesday Oct 27 and Wednesday Oct 28 I go to Mayo for further tests. I pray they do not find any more. Until I get the results you and I must be feeling the same feelings. I will include you in my prayers !

jeanjewing
Posts: 4
Joined: Apr 2010

please keep in touch with me. it is so much easier to talk to someone who understands such a rare cancer. thank you!

emptynestmom2009
Posts: 1
Joined: Jul 2010

I was diagnosed on June 30 2010. Course of treatment? Brachytherapy. It was such a shock we didn't ask all the questions we wanted to. I am scheduled for a myriad of scans and bloodwork on Tuesday. Preop with Anesthesia and Oncologist and Surgeon on Thursday and One week from Monday July 12 will be surgery. I have so many questions...like pain..I am allergic to many pain meds what can they give me? What kind of vision can I look forward to post procedure? When will life become somewhat normal again? Will I be able to drive? What are the side effects? What are the long term effects? What is the likely hood that this will come back again? What is the likely hood of metastasis later? I just need some answers. Anyone have any input? I am confident that My Lord and Savior will provide a way through this but the information I am seeing on the internet is incomplete (or maybe I am not searching correctly) Can anyone help me?

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: A friend of mine who was over last night was telling me about her experience with eye melanoma (very rare). She was diagnosed last year and was told she would lose her eye. But luckily for her a new treatment became available in a clinical trial at Princess Margaret Hospital in Toronto (a world-class cancer facility) that did not involve removing the eye. She went for it, of course. If I understood her correctly, they do not remove the tumour but rather completely stabilize it and it does not grow. If you want me to find out more from her, let me know: cpearce@uwo.ca.

Cindylouwoo's picture
Cindylouwoo
Posts: 19
Joined: Mar 2013

How are you doing now?

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