Choroidal Melanoma Survivors
I had 3 different eye drs look in my eye until they sent me to a retinal specialist and he told me the he suspected that I had a large choroidal melanoma. He referred me to Mayo where the dianosis was confirmed.
I am 37 years old and have a devoted mother who comes with me to every check up. I have a husband who has been to my first visit and isnt very receptive to conversations about my cancer. I had plaque therapy and was told that if my tumor was another mm bigger they would of had to remove my eye. Luckily today I still have my eye and there is minimal vision but not useful vision. I too have had to adapt to no depth perception, learn how to drive, etc....
I am looking for a support group, someone or more that one person to talk with, cry with, laugh with, whatever my emotion might be and in turn will do the same. Thanks for reading a small exerpt of my journey with cancer.
Comments
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mr stevemr steve said:aharlyridr
You can always find people here that will chat, laugh, and cry with. I am a caregiver to my wife who has NETs. Some times its hard for us men to talk about this cancer stuff cause it scares the crap out of us. Good luck on your journey to a cure.
Thank you for the reply. Although my life is pretty normal it still feels so not normal.0 -
Choroidal Melanoma
Hi,
I am a 44 year old mom of two children in the NY area. I was diagnosed in July and treated with radioactive plaque therapy. I also had a PET/CT and they found hodgkins lymphoma so I finished my treatment for that yesterday. I had two months of intensive weekly and sometimes twice a week chemotherapy and yesterday was my last radiation treatment.
It's been a rough five months but luckily, I see well now with my treated eye and no more double vision issues.
It is nice to meet others who have that the same issue.
Luciana0 -
Hi LucianaItalialu said:Choroidal Melanoma
Hi,
I am a 44 year old mom of two children in the NY area. I was diagnosed in July and treated with radioactive plaque therapy. I also had a PET/CT and they found hodgkins lymphoma so I finished my treatment for that yesterday. I had two months of intensive weekly and sometimes twice a week chemotherapy and yesterday was my last radiation treatment.
It's been a rough five months but luckily, I see well now with my treated eye and no more double vision issues.
It is nice to meet others who have that the same issue.
Luciana
Yes it is nice to be able to meet with others who know what its like to go through all of this. My husband is not supportive in the ways I need him to be and so this has been a journey Ive basically done alone. I have a 18 year old son. He is great too but not supportive in the way I need. No one really undetstands unless theyve been there.0 -
Hi
I am new to this and just
Hi
I am new to this and just read your post and I have myself in the last year went through something VERY similar. March 2009 I went under brachytherapy for rather LARGE tumor in my right eye. I go back to the Mayo every 6 months for re checks on my eye, chest x rays and ultrasounds so if the cancer spreads they can keep ontop of it. I am only 28 and am dealing with all this crap. My liver teast are high and this last visit my liver tests showed fatty diffuse infiltration...so i have to to my regular doctor to see what is goin on there.
i have little vision in my right eye, so now I am going through avastin injections to treat macular degeneration. Since the redation did it's job, but it also killed some of the good blood vessels, caused cotton walls, and cysts in there as well. But I have been looking for wupport groups and just someone to talk to who has been going through the same thing as me and it it hard.
And like you said at theast we still have our eye. Thank you for listening! I weill do the same anytime if need be.0 -
Support
In addition to this discussion board, there's one that's dedicated to different kinds of eye cancer. It's http://www.eyecancer.com/
I was diagnosed a year ago October. I have been very lucky. All my tests have been good and while my vision is affected, I still have it...much to my doctor's surprise.
But it's still scary. I am lucky enough to have a Gilda's Club in town where I attend a support group, as does my husband. That has really helped. And part of what we've talked about lately is about how a whole new part of recovery starts once treatment has ended. And how hard it can be because sometimes families think it's all ok then...life can go back to normal...and it can't....or at least not to the old normal. And that it takes time to be able to move toward that new normal.
And I'm still scared. Before every test and ecery doctor's appointment. And sometimes just in general. This is a life changing experience.0 -
i agreeincogjsm said:Support
In addition to this discussion board, there's one that's dedicated to different kinds of eye cancer. It's http://www.eyecancer.com/
I was diagnosed a year ago October. I have been very lucky. All my tests have been good and while my vision is affected, I still have it...much to my doctor's surprise.
But it's still scary. I am lucky enough to have a Gilda's Club in town where I attend a support group, as does my husband. That has really helped. And part of what we've talked about lately is about how a whole new part of recovery starts once treatment has ended. And how hard it can be because sometimes families think it's all ok then...life can go back to normal...and it can't....or at least not to the old normal. And that it takes time to be able to move toward that new normal.
And I'm still scared. Before every test and ecery doctor's appointment. And sometimes just in general. This is a life changing experience.
It is life changing and it is hard to deal with some days and I was just talking with my fiance about this just yesterday, and even though he has been there every step of the way. For some reason he doesn't seem to think I should be having these scared feeling and what not and having as many bad days as I have been having since I found out a a year ago.
We had to postpone our wedding, and now who knows wehn we will be getting married now that I have to go every 6 months for check ups. And my eye sight is very poor and I am getting injections every 6 weeks to try and save my vision. So I think that is what I am having the most trouble with is going to the doctor so much. Plus my liver is stressed at the moment and that makes me nervous. They are going to do more test tomorrow to try and find out why that is. So he thinks I am stressing for no reason and crying for no reason. But I think I have every rightto get upset when my worl changed a year ago. And it gets frustrating to talk to him anout what I am feeling. I know he cares but he just does not act as if he does.0 -
I feel the samespringm said:i agree
It is life changing and it is hard to deal with some days and I was just talking with my fiance about this just yesterday, and even though he has been there every step of the way. For some reason he doesn't seem to think I should be having these scared feeling and what not and having as many bad days as I have been having since I found out a a year ago.
We had to postpone our wedding, and now who knows wehn we will be getting married now that I have to go every 6 months for check ups. And my eye sight is very poor and I am getting injections every 6 weeks to try and save my vision. So I think that is what I am having the most trouble with is going to the doctor so much. Plus my liver is stressed at the moment and that makes me nervous. They are going to do more test tomorrow to try and find out why that is. So he thinks I am stressing for no reason and crying for no reason. But I think I have every rightto get upset when my worl changed a year ago. And it gets frustrating to talk to him anout what I am feeling. I know he cares but he just does not act as if he does.
Hi springm, I just celebrated my one year diagnosis date and as of my last check up I am doing just fine. But there isnt a day that goes by that fear doesnt creep into my daily activities. My tumor is 5.2mm (I think) and no sign of spread and my liver tests have been "normal" with a slightly elevated bilirubin. I was married 3 months before my diagnosis and lets just say we are on the verge of divorce. I have not been able to grieve over my loss of vision becuz he complains Im to crabby and must need my depression/anxiety meds increased...which I might add I did to just prove him wrong. My husband is very insensitive and unsupportive. When I was at my last check up he texted me good luck....no phone call!!! But also in his defense, men deal with this serious stuff way differently than we do especially the ones diagnosed. Cancer is a very scary word and also very scary to live with. There will be days where I will cry wondering what the hell I did to deserve this...but whatever the emotion I might have I have to do it alone. Which is so heartbreaking.....I am a member of a team on the Relay for Life. It is put on by the American Cancer Society and I attended my first event last year and the support that is given to the survivors is amazing. I am getting more involved in fundraising and trying to focus on the good in my life and if my marriage fails....it wasnt meant to be. The most important person in this fight is "me" "you" those living with cancer. If you need me or would like to talk more directly to me I can give you my email. Good Luck and Take Care....Always aharlyridr0 -
hi aharlyridraharlyridr said:I feel the same
Hi springm, I just celebrated my one year diagnosis date and as of my last check up I am doing just fine. But there isnt a day that goes by that fear doesnt creep into my daily activities. My tumor is 5.2mm (I think) and no sign of spread and my liver tests have been "normal" with a slightly elevated bilirubin. I was married 3 months before my diagnosis and lets just say we are on the verge of divorce. I have not been able to grieve over my loss of vision becuz he complains Im to crabby and must need my depression/anxiety meds increased...which I might add I did to just prove him wrong. My husband is very insensitive and unsupportive. When I was at my last check up he texted me good luck....no phone call!!! But also in his defense, men deal with this serious stuff way differently than we do especially the ones diagnosed. Cancer is a very scary word and also very scary to live with. There will be days where I will cry wondering what the hell I did to deserve this...but whatever the emotion I might have I have to do it alone. Which is so heartbreaking.....I am a member of a team on the Relay for Life. It is put on by the American Cancer Society and I attended my first event last year and the support that is given to the survivors is amazing. I am getting more involved in fundraising and trying to focus on the good in my life and if my marriage fails....it wasnt meant to be. The most important person in this fight is "me" "you" those living with cancer. If you need me or would like to talk more directly to me I can give you my email. Good Luck and Take Care....Always aharlyridr
It is so nice to hear from someone who is going through something so similar! It would be nice to get your e-mail! And I willgive you mine. I hear you on the anti depressant meds...I actually am having to go off mine now due to my liver tests being so high. I am kinda scared about that, but at the same time I need to keep mu liver as healthy as I can to keep my melanoma from spreading. This is day 2 of weening me off of them so let's hope chris and I don't start to go backwards again in our relationship...since we just got back on the right path again after a really rough patch.
I am sorry to hear about you and your husband...I know you said it was not meant to be but still to add that on top of the cancer is just not whst you need. And it has been just about one year for me as well since my diagnosis. Wow...what a rough year huh? Like you said we have to try and focus on the good in our life...which can be hard to do...who do you have as a support system? Mom dad? Any brothers or sisters? I am here for you if you need me. Yo take care and hope to hear from you soon! Springm0 -
I am so sorry for the longspringm said:hi aharlyridr
It is so nice to hear from someone who is going through something so similar! It would be nice to get your e-mail! And I willgive you mine. I hear you on the anti depressant meds...I actually am having to go off mine now due to my liver tests being so high. I am kinda scared about that, but at the same time I need to keep mu liver as healthy as I can to keep my melanoma from spreading. This is day 2 of weening me off of them so let's hope chris and I don't start to go backwards again in our relationship...since we just got back on the right path again after a really rough patch.
I am sorry to hear about you and your husband...I know you said it was not meant to be but still to add that on top of the cancer is just not whst you need. And it has been just about one year for me as well since my diagnosis. Wow...what a rough year huh? Like you said we have to try and focus on the good in our life...which can be hard to do...who do you have as a support system? Mom dad? Any brothers or sisters? I am here for you if you need me. Yo take care and hope to hear from you soon! Springm
I am so sorry for the long delay in replying. Lets just say I have had a very hard week emotionally.
My email is aharlyridr@yahoo.com....if you have yahoo msgr my screen name is aharlyridr....
You asked about my support system...well it is very weak but I am working on strengthening it. I am seeing a counselor now to help me sort out everything and to try and make some sense out of it all. I will respond more later but wanted to get back to you with my email.
Thank you0 -
that is understandable...andaharlyridr said:I am so sorry for the long
I am so sorry for the long delay in replying. Lets just say I have had a very hard week emotionally.
My email is aharlyridr@yahoo.com....if you have yahoo msgr my screen name is aharlyridr....
You asked about my support system...well it is very weak but I am working on strengthening it. I am seeing a counselor now to help me sort out everything and to try and make some sense out of it all. I will respond more later but wanted to get back to you with my email.
Thank you
that is understandable...and i forgot to give you mine in the lst message...it is dm_fan2@hotmail.com so feel free to write me whenever you need someone to talk to!
sorry so short today been a busy day shope to hear from you soon.
springm0 -
Choroidal Melanoma
Hi, I also was diagnosed with Choroidal Melanoma in my right eye. My Specialist, Dr. Wilson is 5 hours away at UT Hamilton Eye Clinic in Memphis, TN. I had the plaque radiation,in January 2010, had to stay in Memphis for 7 days. I went back for my 8 week check up, and 3 days earlier, lost my vision. I am trying so hard to learn to pour coffee, not miss my cup, etc. It is a whole new world out there, one that I get depressed about. I try to stay positive with scripture and positive feedback. I can relate with you and would like for you to please be my friend. I live in Montevallo, AL
I am so sorry we had to be in this small rare division of cancer. (6 IN ONE MILLION) I have been in shock for 3 months, as there is NO cancer in my whole family. Why couldn't we have won the lottery instead?
Take care, please contact me, as I need to know I am not alone..God Bless..Jean0 -
words of encouragement....jeanjewing said:Choroidal Melanoma
Hi, I also was diagnosed with Choroidal Melanoma in my right eye. My Specialist, Dr. Wilson is 5 hours away at UT Hamilton Eye Clinic in Memphis, TN. I had the plaque radiation,in January 2010, had to stay in Memphis for 7 days. I went back for my 8 week check up, and 3 days earlier, lost my vision. I am trying so hard to learn to pour coffee, not miss my cup, etc. It is a whole new world out there, one that I get depressed about. I try to stay positive with scripture and positive feedback. I can relate with you and would like for you to please be my friend. I live in Montevallo, AL
I am so sorry we had to be in this small rare division of cancer. (6 IN ONE MILLION) I have been in shock for 3 months, as there is NO cancer in my whole family. Why couldn't we have won the lottery instead?
Take care, please contact me, as I need to know I am not alone..God Bless..Jean
My grandmother, also named Dorothy (I have made this account for her), is 84 yrs old and just diagnosed with Choroidal melanoma of the right eye. She is overall very healthy. You wouldn't think she was over 65! She does have macular degeneration in the left eye as well thus leaving her with poor vision bilaterally. We are still in the testing phase to ensure it hasn't spread to other areas. Her first appt at MD Anderson was this past Wednesday. She was given the options of removal of the eye or radiation with the plaque. She believes radiation is the answer; however, she is very concerned about the discomfort she will encounter during the procedure. Being in healthcare myself, I do believe we can control the pain with medications but she is unsure if she will be able to handle it. My research revealed that while uncomfortable and there will be some pain, many do well with just ibuprofen on schedule during the time the plaque is in place. Can you give some additional information regarding your experience that we can share with her? She knows that leaving it will cause more issues but is very anxious about treatment.
Thank you for your time and consideration! God Bless!
Dorothy0 -
6 month survivoraharlyridr said:I feel the same
Hi springm, I just celebrated my one year diagnosis date and as of my last check up I am doing just fine. But there isnt a day that goes by that fear doesnt creep into my daily activities. My tumor is 5.2mm (I think) and no sign of spread and my liver tests have been "normal" with a slightly elevated bilirubin. I was married 3 months before my diagnosis and lets just say we are on the verge of divorce. I have not been able to grieve over my loss of vision becuz he complains Im to crabby and must need my depression/anxiety meds increased...which I might add I did to just prove him wrong. My husband is very insensitive and unsupportive. When I was at my last check up he texted me good luck....no phone call!!! But also in his defense, men deal with this serious stuff way differently than we do especially the ones diagnosed. Cancer is a very scary word and also very scary to live with. There will be days where I will cry wondering what the hell I did to deserve this...but whatever the emotion I might have I have to do it alone. Which is so heartbreaking.....I am a member of a team on the Relay for Life. It is put on by the American Cancer Society and I attended my first event last year and the support that is given to the survivors is amazing. I am getting more involved in fundraising and trying to focus on the good in my life and if my marriage fails....it wasnt meant to be. The most important person in this fight is "me" "you" those living with cancer. If you need me or would like to talk more directly to me I can give you my email. Good Luck and Take Care....Always aharlyridr
I underwent plaque radiation treatment for a 12mm x6mm tumor in my right eye 6 months ago. Although the tumor is shrinking and all tests show negative for cancer elsewhere in my body there's not a day that I don't think about it. I am thankful for my treatment but everyone thinks I am ok. I am not ok. I pretend things are good (and they are compared to others). I just wish I could be positive ALL the time about this.0 -
I,also, have Choroidaljeanjewing said:Choroidal Melanoma
Hi, I also was diagnosed with Choroidal Melanoma in my right eye. My Specialist, Dr. Wilson is 5 hours away at UT Hamilton Eye Clinic in Memphis, TN. I had the plaque radiation,in January 2010, had to stay in Memphis for 7 days. I went back for my 8 week check up, and 3 days earlier, lost my vision. I am trying so hard to learn to pour coffee, not miss my cup, etc. It is a whole new world out there, one that I get depressed about. I try to stay positive with scripture and positive feedback. I can relate with you and would like for you to please be my friend. I live in Montevallo, AL
I am so sorry we had to be in this small rare division of cancer. (6 IN ONE MILLION) I have been in shock for 3 months, as there is NO cancer in my whole family. Why couldn't we have won the lottery instead?
Take care, please contact me, as I need to know I am not alone..God Bless..Jean
I,also, have Choroidal Melanoma in my right eye and had plaque radiation in September of this year. I go to University of Cincinnati, 3 hrs. away, for treatment. You are not alone, Jean. I work so hard to stay positive. It's hard. I hope you are doing better.0 -
I just joined this site anddottie27 said:words of encouragement....
My grandmother, also named Dorothy (I have made this account for her), is 84 yrs old and just diagnosed with Choroidal melanoma of the right eye. She is overall very healthy. You wouldn't think she was over 65! She does have macular degeneration in the left eye as well thus leaving her with poor vision bilaterally. We are still in the testing phase to ensure it hasn't spread to other areas. Her first appt at MD Anderson was this past Wednesday. She was given the options of removal of the eye or radiation with the plaque. She believes radiation is the answer; however, she is very concerned about the discomfort she will encounter during the procedure. Being in healthcare myself, I do believe we can control the pain with medications but she is unsure if she will be able to handle it. My research revealed that while uncomfortable and there will be some pain, many do well with just ibuprofen on schedule during the time the plaque is in place. Can you give some additional information regarding your experience that we can share with her? She knows that leaving it will cause more issues but is very anxious about treatment.
Thank you for your time and consideration! God Bless!
Dorothy
I just joined this site and your grandmother has probably undergone treatment by now. My plaque radiation treatment for choroidal melanoma in my right eye was unpleasant but tolerable. My treatment was in Cincinnati, OH in September of this year. I suffer from chronic miagraine headaches and had one for the first 2 days of the radiation treatment. I think it was a godsend to take my mind away from the treatment. I did not take any pain medication during the treatment. However, I have a high tolerance for pain. I found the anticipation to be worse than the treatment. I hope your grandmother is doing well.0 -
Got diagnosed last month with Choroidalnewtop said:I,also, have Choroidal
I,also, have Choroidal Melanoma in my right eye and had plaque radiation in September of this year. I go to University of Cincinnati, 3 hrs. away, for treatment. You are not alone, Jean. I work so hard to stay positive. It's hard. I hope you are doing better.
Hi, not only is this Choroidal Melanoma scary, but finding someone with this in common with isn't easy. I'm recovering from my plaque removal a couple weeks ago very slowly. I don't know what to expect but it seems everyone has their own unique experience. I live alone and have pretty much no family, (one sister) I'm 50 going on 30, so I thought. So nedless to say I'm strugling with depression and fear. I have more questions every single day and getting answers is next to impossible. I traveled to Wills in Philly and I'm still not having any fun yet. Hopefully someone out there is willing to chat with me. I want to do everything in my power to be as healthy as possibe but at the same time would love to just drink myself to sleep. I want to do nothing but I at the same time feel like I need to live life because now it suddenly seems short. For real! So scared.0 -
Thank you so much for sharing
My husband was refered to a retna specialist (from our regular optometrist when he found what looked like a cyst or tear in his Iris) from a regular check up. The retna specialist said it looked like Iris melanoma, but did not fit all of the symptoms. We were then refered to a specialist in Denver (we are originaly from Texas) and we've done so many different tests and cannot get a conclusion. Just a few weeks ago he had surgery to see what it is (since they saw it was a mass) and also to see if it was in the cilary body. We are both 24, and we have not been able to speak to anyone else that might have had anything similar (normally older or something esle). My whole story is here http://csn.cancer.org/node/242575, please keep in touch.0 -
Hellospringm said:Hi
I am new to this and just
Hi
I am new to this and just read your post and I have myself in the last year went through something VERY similar. March 2009 I went under brachytherapy for rather LARGE tumor in my right eye. I go back to the Mayo every 6 months for re checks on my eye, chest x rays and ultrasounds so if the cancer spreads they can keep ontop of it. I am only 28 and am dealing with all this crap. My liver teast are high and this last visit my liver tests showed fatty diffuse infiltration...so i have to to my regular doctor to see what is goin on there.
i have little vision in my right eye, so now I am going through avastin injections to treat macular degeneration. Since the redation did it's job, but it also killed some of the good blood vessels, caused cotton walls, and cysts in there as well. But I have been looking for wupport groups and just someone to talk to who has been going through the same thing as me and it it hard.
And like you said at theast we still have our eye. Thank you for listening! I weill do the same anytime if need be.
My husband is going in the diagnose and finding (treatment) phase (we are both 24), but he got sick (I thought it was food poisoning) and we went to the ER (where they said his liver was not doing so good)the doctors just suggested it might have been because he was dehydrated from the possible food poisoning, but is that something that might be related? (This was after our specialists said it was Iris melanoma)0 -
role reversal?aharlyridr said:I feel the same
Hi springm, I just celebrated my one year diagnosis date and as of my last check up I am doing just fine. But there isnt a day that goes by that fear doesnt creep into my daily activities. My tumor is 5.2mm (I think) and no sign of spread and my liver tests have been "normal" with a slightly elevated bilirubin. I was married 3 months before my diagnosis and lets just say we are on the verge of divorce. I have not been able to grieve over my loss of vision becuz he complains Im to crabby and must need my depression/anxiety meds increased...which I might add I did to just prove him wrong. My husband is very insensitive and unsupportive. When I was at my last check up he texted me good luck....no phone call!!! But also in his defense, men deal with this serious stuff way differently than we do especially the ones diagnosed. Cancer is a very scary word and also very scary to live with. There will be days where I will cry wondering what the hell I did to deserve this...but whatever the emotion I might have I have to do it alone. Which is so heartbreaking.....I am a member of a team on the Relay for Life. It is put on by the American Cancer Society and I attended my first event last year and the support that is given to the survivors is amazing. I am getting more involved in fundraising and trying to focus on the good in my life and if my marriage fails....it wasnt meant to be. The most important person in this fight is "me" "you" those living with cancer. If you need me or would like to talk more directly to me I can give you my email. Good Luck and Take Care....Always aharlyridr
My husband is the one that was diagnosed with Iris melanoma (possibly in the ciliary area) and I have a hard time dealing with it. at first, I have to admit, I was in denial (even once we started to go to the specialists) I just wanted it to be made up, (we both did) but when I finally came to terms with it, my husband acted like it did not exist.
I get upset when we have to go to specialist and have to decide in procedures and treatments (and he does not take it seriously). It upsets me because it's almost like he does not care about it (and I have mixed issues with that). Some people , have told me that it's best for him to be carefree for now, and not have to worry about it, but I'm the one that has to schedule the procedures and have to keep up with his schedules. (I almost feel like a mom in a way) because of this I have had breakdowns (kept them to myself) and I've lost like 30lbs from the stress alone.
I guess I'm asking for suggestions, as a person that has to deal with it, what would you suggest the caretakers to do/say? I'm giving everything I got, and then some (but as a full time worker/full time student) I feel like I cannot keep up
0
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