CancerCompass message board discussion started by Kfair on 1/11/2007 http://www.cancercompass.com/message-board/message/all,8785,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with melanoma in situ last year while pregnant with my daughter. I had a wide excision and have been clear since. Recently I noticed my vision was deteriorating so I went to the doctor. I am 31 and they found a cataract. They also saw inflammation and they want me to go to a specialist for an ultrasound. I'm so discouraged! I feel like melanoma is so difficult to treat and it will always be hanging over my head. The only follow up from the melanoma has been skin checks- and now my eye! Any advice would be welcomed- anyone else with eye melanoma (i think called chrondial?) or melanoma in situ? Kfair Thu, 11 Jan 2007 00:00:00 GMT From my husband"s experience (he had melanoma in situ removed also), He never had anything but skin checks also, but wished they had checked his lymph nodes anyway.   Because this is the way it seems to spread----the nearest lymph node and then other closest organs.  By that time it is stage 4---too late.  Even CT Scans every year would have found that his had spread----maybe he would have had more time. I pray this helps you.  Be aggressive even 2, 3, or 4 years later. Prayerful Mon, 15 Jan 2007 00:00:00 GMT Thanks for your message. I am so scared because all they will agree to is annual chest scans. It is so difficult to get any doctor to agree to a CT scan to check for any additional spreading if you have in situ. I believe this is because it is so expensive & insurance companies don't want to foot that bill for someone who is not as high of a risk. I had a friend who had the same experience (in situ & then Stage 4). I am terrified as I am the mom of a 10 month old daughter.  I'm sorry to hear that it sounds like your husband lost his battle with melanoma. I'm trying to be as assertive as possible with my doctors.  Thanks for your prayers. Mine go out to your family as well. Kfair Tue, 16 Jan 2007 00:00:00 GMT I would ask your doctor to refer you to an oncologist. I had Melanoma in my arm removed this past Sept. My oncologist ordered me to have PET scans every 6 months and see my dermatologist every 3 months for the next 3 years. Even though I only had stage 1B Melanoma and it hadn't spread to my lymphnodes- My oncologist is being very serious about my follow up care. I would demand a referral to an oncologist.  This is your life we are talking about!!!!! Cooper1 Thu, 18 Jan 2007 00:00:00 GMT My life partner Marshall has ocular choroidal  melanoma with metastasis to the liver and lung last November.  There are not a lot of doctors who are familiar with this type of cancer because it is rare.  At this point, the first line of treatment is to surgically place a plaque with radioactive seeds behind the tumor, leave it there for four days, and then remove it.  That destroys the tumor.  I don't know where you're located, but you need to find a doctor qualified to treat this disease.  There's good information on the web.  Just Google ocular melanoma.  The following link is for a very active email forum of patients and caregivers specifically for ocular melanoma.  That will probably be the most help to you.  Don't be frightened.  More and more treatments are being tried.  Take care and good luck. Elsie   http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-me Elsie80 Sat, 17 Feb 2007 00:00:00 GMT I Was diagnosed with melanoma insuti of my left cheek, I Mohs sx and was told that I would be ok that I have a 1% chance of it returning , NEITHER of the docs that treated me mentioned anything about getting further testing, they told me I would be fine and come back for re-checks every 4 mths, after reading your story I am scared, is there something that I am missing? Mohssx2007 Tue, 03 Jul 2007 00:00:00 GMT My father had ocular melanoma in 2003.  Went to Drs Jerry and CArol Shields at Wills Eye Hospital in Philedelphia.  They are the BEST of the best!  Took excellent care of my father.  They also told the doctors here to do the screens, CT, PET, and MRI scans.  He was just diagnosed this week with a metastisis on his liver, but they have caught it very early, thanks to the Shields advise.  We are scared, but praying.  Kepp your faith up as God can heal anything.  But I would advise this team of doctors.  They were incredible!Good luck! maggie1131 Sat, 14 Jul 2007 00:00:00 GMT Wills Eye in Philadelphia and Drs. Carol & Jerry Shields are the best!I have been a patient since 1995 , lost my left eye, it has metasticized tolungs but I am still here.  Now I am going to try a trial at Jefferson whichthe Shields are affiliated with.  Good luck to all. Gretna1 Fri, 26 Sep 2008 00:00:00 GMT