Diagnosed Friday (Choroidal Melanoma)

Tom:

I am sorry to hear about your diagnosis. Your reaction is quite normal–anxiety, stress, etc.  People deal with these things differently, but many people find some comfort in becoming very informed and in finding other people afftected by the same kind of cancer.  I hope you will be able to accomplish both of those through this site.  

Being informed, though, is challenging.  You can spend hours on the web and find yourself deeply depressed by all the horror stories.  Remember, that you are not a statistic.  Statistics tell us what has happened to a large group of people over the past five years.  They say nothing about what will happen to one particular person going forward.  You will find many people who have done well with this cancer, and should find hope in that.

Choroidal melanoma is rare, as I am sure you know.  If possible, it is good be seen by a treatment team with some experience in this area.  The difficulty of doing so rises with the rareness of the cancer.  You may know that your former governor ( and near neighbor, down in Lafayette), Ms. Blanco, has ocular melanoma.  I am not sure where she was treated, but believe that at hte very least she consulted with someone in Memphis.  Others may weigh in on this with more detail.

Tim–MRF

Tom:

I am sorry to hear about your diagnosis. Your reaction is quite normal–anxiety, stress, etc.  People deal with these things differently, but many people find some comfort in becoming very informed and in finding other people afftected by the same kind of cancer.  I hope you will be able to accomplish both of those through this site.  

Being informed, though, is challenging.  You can spend hours on the web and find yourself deeply depressed by all the horror stories.  Remember, that you are not a statistic.  Statistics tell us what has happened to a large group of people over the past five years.  They say nothing about what will happen to one particular person going forward.  You will find many people who have done well with this cancer, and should find hope in that.

Choroidal melanoma is rare, as I am sure you know.  If possible, it is good be seen by a treatment team with some experience in this area.  The difficulty of doing so rises with the rareness of the cancer.  You may know that your former governor ( and near neighbor, down in Lafayette), Ms. Blanco, has ocular melanoma.  I am not sure where she was treated, but believe that at hte very least she consulted with someone in Memphis.  Others may weigh in on this with more detail.

Tim–MRF

Tom:

I am sorry to hear about your diagnosis. Your reaction is quite normal–anxiety, stress, etc.  People deal with these things differently, but many people find some comfort in becoming very informed and in finding other people afftected by the same kind of cancer.  I hope you will be able to accomplish both of those through this site.  

Being informed, though, is challenging.  You can spend hours on the web and find yourself deeply depressed by all the horror stories.  Remember, that you are not a statistic.  Statistics tell us what has happened to a large group of people over the past five years.  They say nothing about what will happen to one particular person going forward.  You will find many people who have done well with this cancer, and should find hope in that.

Choroidal melanoma is rare, as I am sure you know.  If possible, it is good be seen by a treatment team with some experience in this area.  The difficulty of doing so rises with the rareness of the cancer.  You may know that your former governor ( and near neighbor, down in Lafayette), Ms. Blanco, has ocular melanoma.  I am not sure where she was treated, but believe that at hte very least she consulted with someone in Memphis.  Others may weigh in on this with more detail.

Tim–MRF

Hi Tom,

Just wanted to share with you some of my lengthy story, in the hope that it will allay some of your anxiety  (which we have all gone through).  Tim is right that none of us is a statistic.

I got choroidal melanoma when I was 45; I am now 76!!

Furthermore, the rotten beast has metastasized and is many places in my body:  liver, lungs, peritoneum, abdominal wall, etc., etc.  NINE years ago I was given 6 months to live.  So much for statistics.

My cancer did not metastasize until 22 years after the initial primary was diagnosed.  Take a lesson from that and never stop getting scans to check for metastasis.  Blood tests (liver function tests) are not good enough.  My liver function tests, to this day are OK.

Tim wisely suggests that you see a physician who has a lot of experience with this.  I don't know if you are able to travel, but many of us have found that Jerry Shields and Carol Shields (married), at the Wills Eye Hospital in Philadelphia are extremely experienced with Ocular Melanoma primaries.

Take a deep breath.  The world of Ocular Melanoma is a new one for you, and it is very complex.  Many docs don't know thing one about it because of its rarity, so you will need to take matters into your own hands regarding finding docs who do know.

Though I am aged, and Stage IV, I am living a good life.  I have yet to have any pain from the cancer.  I go and do pretty much as I please.  I've had many, many treatments, which usually slow down the cancer for a while, then I go on to another treatment.  But my life is good, very good.

If I can be of any help, please ask.

Esther

Hi Tom,

Just wanted to share with you some of my lengthy story, in the hope that it will allay some of your anxiety  (which we have all gone through).  Tim is right that none of us is a statistic.

I got choroidal melanoma when I was 45; I am now 76!!

Furthermore, the rotten beast has metastasized and is many places in my body:  liver, lungs, peritoneum, abdominal wall, etc., etc.  NINE years ago I was given 6 months to live.  So much for statistics.

My cancer did not metastasize until 22 years after the initial primary was diagnosed.  Take a lesson from that and never stop getting scans to check for metastasis.  Blood tests (liver function tests) are not good enough.  My liver function tests, to this day are OK.

Tim wisely suggests that you see a physician who has a lot of experience with this.  I don't know if you are able to travel, but many of us have found that Jerry Shields and Carol Shields (married), at the Wills Eye Hospital in Philadelphia are extremely experienced with Ocular Melanoma primaries.

Take a deep breath.  The world of Ocular Melanoma is a new one for you, and it is very complex.  Many docs don't know thing one about it because of its rarity, so you will need to take matters into your own hands regarding finding docs who do know.

Though I am aged, and Stage IV, I am living a good life.  I have yet to have any pain from the cancer.  I go and do pretty much as I please.  I've had many, many treatments, which usually slow down the cancer for a while, then I go on to another treatment.  But my life is good, very good.

If I can be of any help, please ask.

Esther

Hi Tom,

Just wanted to share with you some of my lengthy story, in the hope that it will allay some of your anxiety  (which we have all gone through).  Tim is right that none of us is a statistic.

I got choroidal melanoma when I was 45; I am now 76!!

Furthermore, the rotten beast has metastasized and is many places in my body:  liver, lungs, peritoneum, abdominal wall, etc., etc.  NINE years ago I was given 6 months to live.  So much for statistics.

My cancer did not metastasize until 22 years after the initial primary was diagnosed.  Take a lesson from that and never stop getting scans to check for metastasis.  Blood tests (liver function tests) are not good enough.  My liver function tests, to this day are OK.

Tim wisely suggests that you see a physician who has a lot of experience with this.  I don't know if you are able to travel, but many of us have found that Jerry Shields and Carol Shields (married), at the Wills Eye Hospital in Philadelphia are extremely experienced with Ocular Melanoma primaries.

Take a deep breath.  The world of Ocular Melanoma is a new one for you, and it is very complex.  Many docs don't know thing one about it because of its rarity, so you will need to take matters into your own hands regarding finding docs who do know.

Though I am aged, and Stage IV, I am living a good life.  I have yet to have any pain from the cancer.  I go and do pretty much as I please.  I've had many, many treatments, which usually slow down the cancer for a while, then I go on to another treatment.  But my life is good, very good.

If I can be of any help, please ask.

Esther

Dear Tom,

I am sorry to hear about your recent diagnosis, but glad you found us.  My husband was diagnosed 5 years ago, at the age of 34, and I remember the day like it was yesterday– our world stopped and felt like it would never be the same (since that time, however, we have had a wonderful and rich 5 years).  It was important for us to find doctors with whom we felt comfortable– do you feel comfortable with your medical team?  We also found it helpful to talk with people who had been through the journey before us– we have just started a new "Buddy Program" for newly diagnosed patients and I wonder if this is something in which you would be interested?

Hang in there and lean on us as much as you need….

With Warm Regards,

Sara – CURE OM

Dear Tom,

I am sorry to hear about your recent diagnosis, but glad you found us.  My husband was diagnosed 5 years ago, at the age of 34, and I remember the day like it was yesterday– our world stopped and felt like it would never be the same (since that time, however, we have had a wonderful and rich 5 years).  It was important for us to find doctors with whom we felt comfortable– do you feel comfortable with your medical team?  We also found it helpful to talk with people who had been through the journey before us– we have just started a new "Buddy Program" for newly diagnosed patients and I wonder if this is something in which you would be interested?

Hang in there and lean on us as much as you need….

With Warm Regards,

Sara – CURE OM

Dear Tom,

I am sorry to hear about your recent diagnosis, but glad you found us.  My husband was diagnosed 5 years ago, at the age of 34, and I remember the day like it was yesterday– our world stopped and felt like it would never be the same (since that time, however, we have had a wonderful and rich 5 years).  It was important for us to find doctors with whom we felt comfortable– do you feel comfortable with your medical team?  We also found it helpful to talk with people who had been through the journey before us– we have just started a new "Buddy Program" for newly diagnosed patients and I wonder if this is something in which you would be interested?

Hang in there and lean on us as much as you need….

With Warm Regards,

Sara – CURE OM

Tom,

How are you doing.  Been thinking about you.

Esther

Tom,

How are you doing.  Been thinking about you.

Esther

Tom,

How are you doing.  Been thinking about you.

Esther

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Tom,

You are not alone. Although getting it in the eye is rare, I was also diagnosed with it in my right eye in April of 2009. I was told to get a PET scan to make sure it was not anywhere else. You will have to get MRI's of your liver and lungs every six months and bloodwork also with liver function tests for the rest of your life. In May of 2009, I had the PET scan, took forever to schedule and get approved thru my insurance company. Once approved, I had it done and found no signs of cancer anywhere else. I flew to Philadelphia, PA per my Retina Specialist's orders to see Dr. Carol Shields at Wills Eye Hospital. There I was told I had to have radioplaque therapy. As scary as it sounded, I was willing to do what I had to, to get it out of me. I even accepted the fact that if they had to remove the entire eye, they could. I wanted to live. I had the radioplaque surgery on 5/21/09, had the removal on 5/25/09. Returned home the very next day, returned to work 4 days later. I wear sunglasses outside at all times in the daytime, as I live in Florida. I try to watch what I eat, it is still a struggle to this day, I take vitamins and vitamin D suppliments. I drink water now, no soda. I friended a few others on the Eye Cancer Facebook site. We share our stories and support. I am here if you have any questions. You can email me at [email protected] if you have questions. I am since then clear of cancer to my knowledge. I still have to fight my doctors and insurance companies to get the tests and then to get them approved. I am in $10,000 medical debt due to insurance company not wanting to pay for everything. It is growing and I have accepted that. I have medical bills in collections and I am not proud of it, but I can only handle what I can handle. I am 45 years old and fighting to protect myself and it is something that I will have to do for the rest of my life. I want to see my children graduate college, get married, have children and so on. I am not ready to die. And I am here to talk to if you need me. We need to support each other.

Sincerely,

Theresa

Hi Tom,

I sent you a message on the regular bulletin board about Ocular Mel.

Suzanne from California

Wills is definitely the place I go!

Hi Tom,

I sent you a message on the regular bulletin board about Ocular Mel.

Suzanne from California

Wills is definitely the place I go!

Hi Tom,

I sent you a message on the regular bulletin board about Ocular Mel.

Suzanne from California

Wills is definitely the place I go!