Diagnosed Friday (Choroidal Melanoma)

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12/19/2011 12:22am
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Replies: 18

Hi ! My name is Tom fontenot , I was diagnosed with Choroidal Melanoma Friday, the last 2 days have been like a nightmare. Im 49 and never have been sick, my vision is screwed up, didnt sleep Friday night but rested well last night, Today I seem to have some peace, guess im getting used to it already, any feedback will be greatly appreciated

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

 

Just wanted to say hi to you Tim, and I think most of the consensus is that Wills Eye Hospital is wonderful and I would recommend them to everyone.

I am doing fine with the loss of my eye. Depth perception problems still are an issue and I don't know if that will ever go away. I will be going back to Philly in late March for a follow up and I hope to visit an Anaplastologist in Maryland that will make an artificial piece to go over my eye cavity. His name is Juan Garcia, you should look him up, he is a fabulous artist.

I hope to see you in the near future if you come back out to S.F. I want to help in some capacity at the gala.

Warm regards,

Suzanne

Every day I wake up is a gift!

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 Esther,

I am a Conjunctival Melanoma survivor that was diagnosed in 2003 and it went to stage IV in 2006. At that point I was given 6 to 9 months to live, and like you say, so much for statistics!!

I underwent 18 months of brutal Biochemotherapy with IL-2.

After that I kept getting local recurrences and with my oncologists advice, I decided to have my eye and lid removed. I am still here though and live a good life also. I fly to Philly to Wills and see Jerry Shields and Sara Lally (Carol's niece). I feel like Philadelphia is my second home!

I am 51 and I am bound and determined to be here until there's a cure! I would love to correspond with you and others on this OM board.

Suzanne from California

Keep on keeping on!

Every day I wake up is a gift!

Suzanne, Are you still without a prosthetic contact implant? I ready over these and dont quite see anyone like my case and still is suffering from primary disease issues and complications. But Not my point. My point is what are you wearing over you eye and lid??

 

David Stewart ,-)

The Cancer Fund

www.fightuntilacureisknown.org

Suzanne, Are you still without a prosthetic contact implant? I ready over these and dont quite see anyone like my case and still is suffering from primary disease issues and complications. But Not my point. My point is what are you wearing over you eye and lid??

 

David Stewart ,-)

The Cancer Fund

www.fightuntilacureisknown.org

Suzanne, Are you still without a prosthetic contact implant? I ready over these and dont quite see anyone like my case and still is suffering from primary disease issues and complications. But Not my point. My point is what are you wearing over you eye and lid??

 

David Stewart ,-)

The Cancer Fund

www.fightuntilacureisknown.org

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

Hi Sara, I would really like to be a buddy and I think it was Mary that I sent an email to regarding this. What type of ocular mel does your hubby have. I am 5 years NED myself and my best wishes to you and him.

Suzanne from California

If there is anything I can be involved with here in California with CURE OM please let me know!

Every day I wake up is a gift!

Hi Suzanne,

My husband has choroidal melanoma-- the most common type of ocular/uveal melanoma.  It would be great to have your involvement in the buddy program-- thank you for your interest!-- I will make sure that Mary has your contact information.  Please feel free to follow-up with me if you have any additional questions or concerns: sselig@melanoma.org

As we get going, we will definitely need your help from California-- this is a COLLABORATIVE effort so thank you for your support.  Being on this bulletin board to share stories is a very important way to help-- we will continue to use this bulletin board to communicate with the community.  Also, "liking" us on Facebook and Twitter is another way to support us and help us spread the word, and, of course, we can support more research and provide more patient and caregiver programming with more funding... if you have other ideas about how you might like to get involved or help, please let us know!

I hope 2012 is a year full of good health and happiness for you and your family and I look forward to being in touch.

Warm Regards,

Sara - CURE OM

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 ttbswagner@aol.com 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

Learn, live, love and tell everyone you love them as it may be the last time you see them.

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 ttbswagner@aol.com 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

Learn, live, love and tell everyone you love them as it may be the last time you see them.

Hi Theresa, I am a stage IV ocular mel survivor. I also go to Wills and see Jerry Shields and Sara Lally. I have conjunctival melanoma, it was right on the surface of my eye. This October my oncologist made the decision that I should have my eye and lid removed due to the pre-cancerous local occurences. I love the staff at Wills and I fly from California to go there!

Conjunctival melanoma accounts for about 2% of eye melanomas. I would love to correspond with all on this forum! 5 years NED!!

Suzanne from California

Every day I wake up is a gift!

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!

Every day I wake up is a gift!

Thanks all!  Sorry it took so long to respond, I had my right eye removed by Dr shields in Philly on 12/22/11. I have not been sick since that day, although if I cough, or feel a minor pain, I think the worst. :) The conformer in the eye socket is very annoying and the lid is stiched shut, I have a hard time believing it can look normal again, but they insist it will.  I am going to see an oncologist  today. I am armed with research, and recommendations from Dr Fingers of the New York Eye Cancer Center. I am trying to decide how I will handle the visit, and without being demanding, make sure this doctor takes an interest in what I have to show him. I dont like confrontation, and don't handle it well unfortunately. Im praying for courage and guidance and patience. I need him to refer me  for the Full body scans. I've had MRI on liver and chest X-RAY of lungs, a nodule was found on lung, but a CT scan came back negative. Thanks for all of your support, Ill let you all know how things go. God Bless.

Tom,

How are you feeling since your last appointment?  I'm hopeful that your doctors were supportive in what you want to do with your health care.  We ran into a problem with my mother in law's doctors.  They were agrumentative, and they were unwilling to listen to me when I had suggested some treatments.  I earned a special nickname from the doctors and I was told, infront of a large group of people that I needed to learn to "not step on someone's toes when they are in charge of what is going on." 

Funny though, I always thought it was the patient that guided what they wanted done with ther body.  I always knew that it was the patients decision for themselves, however, it was in that moment, that I relaized many patients don't have a clue as to WHAT the right choice is. 

For something like this, be demanding, be confrontational.  It is your life,

Hoping you are well,

Molly

The battle was lost, but the war must go on until a cure is found.

Hi Tom,

I was wondering how you were doing and now I know. How did you like your experience with Dr. Shields? I like the whole team. Sara Lally removed my eye and she is Carol Shields' niece. Dr. Jerry is fantastic too. I am sure you will be matched with a great oncologist to take care of you from now on.

The only problem I am having is my depth perception. I sent my story in and it's on the patient profiles. I had a clear CT last month, so so far so good!

Keep us posted on your next step,

Suzanne

Every day I wake up is a gift!