pauljclynch

Hi Ashley

I was diagnosed with OM in February last year and had plaque therapy. It sounds like with your family situation, you need to be more vigilent than most and it is a very serious diagnosis  From experience and research, you will need to take a proactive role in your treatment and eductate yourself as due to the rarity of the condition, unfortunately many Ophthamologist's, no matter how well meaning, kind and sincere, do not know all the details that you need to know both to be proactive with early diagnosis, treatment options, follow up scans and treatments if it does metastisise to liver.  I can't plead with you enough to educate yourself as much as possible.  You may have a great one already, however I have heard too many stories of people, who have died early due to well meaning Ophthamologist's, who aren't familiar with the full nature of this condition and don't want you or your family to be amoung those statistics and makes me both sad and mad that this still happens and hence this note.   

I would strongly recommend you join this list serv to begin educating yourself: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-mel&A=1 which is a group of a few hundred of us whom are going through exactly what you are going through and the pitfalls to avoid and the best oncologists who specialise in OM, who will give you the treatment that you need.

 .  YoYou can subcribe and unsubscribe if you wish at any time.  If you cut and paste your query above, you will learn so much for your sister, son and yourself.  On a very basic level, I am not sure what your doctor has told you, however did they offer or mention to you the option of genetic testing of your OM.  This will help tell you if it may be more agressive or not.  Once you have plaque therapy, you do not have the option of doing this.

The risk for metastasis varies based on a number of factors including the size  of the tumor and it's genetic makeup. In general, the rate of metastasis can be as high as 25% over 5 years and 50% beyond 10 years. Long term survival after metastasis is what is rare. This can be a very agressive disease.

Hopefully this is not all a bit too much, however it is your life you are dealing with and want you and your family to have as much as possible.

All the best with everything.

Paul

Hi Ashley

I was diagnosed with OM in February last year and had plaque therapy. It sounds like with your family situation, you need to be more vigilent than most and it is a very serious diagnosis  From experience and research, you will need to take a proactive role in your treatment and eductate yourself as due to the rarity of the condition, unfortunately many Ophthamologist's, no matter how well meaning, kind and sincere, do not know all the details that you need to know both to be proactive with early diagnosis, treatment options, follow up scans and treatments if it does metastisise to liver.  I can't plead with you enough to educate yourself as much as possible.  You may have a great one already, however I have heard too many stories of people, who have died early due to well meaning Ophthamologist's, who aren't familiar with the full nature of this condition and don't want you or your family to be amoung those statistics and makes me both sad and mad that this still happens and hence this note.   

I would strongly recommend you join this list serv to begin educating yourself: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-mel&A=1 which is a group of a few hundred of us whom are going through exactly what you are going through and the pitfalls to avoid and the best oncologists who specialise in OM, who will give you the treatment that you need.

 .  YoYou can subcribe and unsubscribe if you wish at any time.  If you cut and paste your query above, you will learn so much for your sister, son and yourself.  On a very basic level, I am not sure what your doctor has told you, however did they offer or mention to you the option of genetic testing of your OM.  This will help tell you if it may be more agressive or not.  Once you have plaque therapy, you do not have the option of doing this.

The risk for metastasis varies based on a number of factors including the size  of the tumor and it's genetic makeup. In general, the rate of metastasis can be as high as 25% over 5 years and 50% beyond 10 years. Long term survival after metastasis is what is rare. This can be a very agressive disease.

Hopefully this is not all a bit too much, however it is your life you are dealing with and want you and your family to have as much as possible.

All the best with everything.

Paul

Hi Ashley

I was diagnosed with OM in February last year and had plaque therapy. It sounds like with your family situation, you need to be more vigilent than most and it is a very serious diagnosis  From experience and research, you will need to take a proactive role in your treatment and eductate yourself as due to the rarity of the condition, unfortunately many Ophthamologist's, no matter how well meaning, kind and sincere, do not know all the details that you need to know both to be proactive with early diagnosis, treatment options, follow up scans and treatments if it does metastisise to liver.  I can't plead with you enough to educate yourself as much as possible.  You may have a great one already, however I have heard too many stories of people, who have died early due to well meaning Ophthamologist's, who aren't familiar with the full nature of this condition and don't want you or your family to be amoung those statistics and makes me both sad and mad that this still happens and hence this note.   

I would strongly recommend you join this list serv to begin educating yourself: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-mel&A=1 which is a group of a few hundred of us whom are going through exactly what you are going through and the pitfalls to avoid and the best oncologists who specialise in OM, who will give you the treatment that you need.

 .  YoYou can subcribe and unsubscribe if you wish at any time.  If you cut and paste your query above, you will learn so much for your sister, son and yourself.  On a very basic level, I am not sure what your doctor has told you, however did they offer or mention to you the option of genetic testing of your OM.  This will help tell you if it may be more agressive or not.  Once you have plaque therapy, you do not have the option of doing this.

The risk for metastasis varies based on a number of factors including the size  of the tumor and it's genetic makeup. In general, the rate of metastasis can be as high as 25% over 5 years and 50% beyond 10 years. Long term survival after metastasis is what is rare. This can be a very agressive disease.

Hopefully this is not all a bit too much, however it is your life you are dealing with and want you and your family to have as much as possible.

All the best with everything.

Paul