Several years ago, my mom went for a regular eye checkup. She needed new glasses. Upon examination, her eye doctor said he saw what appeared to be a "freckle" on her retina, and advised that she make an appointment with a retina specialist in town. The retina specialist gave a thorough exam, and immediately referred her to the best eye specialists in the country (at the Philadelphia Eye Institute), because he said she had malignant ocular melanoma. Well, any diagnosis using the words "malignant" and "melanoma" is scary to say the least! Never having heard of such a diagnosis, I immediately set out to research this on the Internet. Every website I found (personal and professional) offered very dire information. The majority of personal websites (this was before blogging became popular) were basically websites in memory of a loved one who had died after a short journey with ocular melanoma. I told Mom, "Don't research this on the Internet until you talk to the specialists!"
Very long story made short: Mom received treatment for the melanoma. The specialists placed a tiny piece of radioactive plaque right onto the tumor itself for a short period of time. Although a recuperation period was inevitable, Mom did very well. Her tumor shrunk (and has continued to shrink . . . the specialists say this is excellent---they didn't want the tumor to shrink too quickly or too slowly). She has continued to travel to Philadelphia for a regular check up. Her latest checkup was Wednesday, and everything continues to look fine! (several years later).
The retina specialist and the specialists in Philadelphia told Mom that every detail was so "lucky." (We're people of faith, and we prefer to see it as God's plan for this situation--I don't believe in "luck.") Many people do not get a diagnosis until the melanoma has advanced far worse than Mom's little "freckle" on the retina. We were "lucky" that Mom went in for a regular eye exam when she did. We were "lucky" that the retina specialist was well acquainted with the experts at the Philadelphia Eye Institute, who had written books and are still on the cutting edge of treating ocular melanoma. We were "lucky" that my parents live within three hours of Philadelphia and not across the country.
As an extended family, we were sitting around the dinner table weeks ago, and talking about Mom's ocular melanoma, and I was telling everyone about the Internet research that offered no hope at all. I was saying "Someone needs to put information out there that offers hope---telling stories of people who have survived and thrived after such a diagnosis. The general consensus at the table was that maybe I should do that! While I don't really have enough time or information to do a blog or website entirely about hope after a diagnosis of malignant ocular melanoma, I can at least tell the short version of the story in this blog, and hope that interested people will be able to find it. There is HOPE! Ocular melanoma is not necessarily a death sentence.
8 comments:
Tammy,
I, too, am an ocular melanoma survivor (3 years and counting) and there are MANY of us out there. There are bulletin boards where we post. Once is at www.eyecancer.com, and one (which is more free-form, as people talk about eveything) is http://health.groups.yahoo.com/group/ChoroidalMelanoma/ I'm sorry you didn't find either of these when your mom was diagnosed. They have been a lifeline for so many of us. Most people with ocular melanoma go on to live very full lives. Most of us are treated with plaque, as your mom was, or proton beam radiation. Unfortunately, there are people who lose their eye to the disease. The main thing is to keep on top of this--even afterwards, because OM can spread to other organs, which is the reason you saw the obituaries for people. The chance of spread differs as it depends on many factors such as size of tumor and location, but there is hope even if it does spread, with early detection, of course. There's even a website for ocular tumor patients whose tumors have spread, where information on treatment is shared. That's called Ocu-mel and is at http://www.tustison.com/ocu-mel_listserv.shtml
Thanks for posting, and continued good health to your mother and your family. Lynne
Thanks so much for your comment to my blog post! I am so glad to see that in the five years since my mom was diagnosed and treated, the Internet has so very many more sites and stories and message boards and support groups available for those with similar diagnoses. Thanks also for the links you suggested. I put a section of links specifically about eye cancer/ocular melanoma on the side of my blog. My mom dabbles with e-mail and the Internet, but she probably is not one who will eagerly join in any discussion groups. But I will tell her about them, and I'm sure she'll be glad that they are available to anyone who might need them!
Thanks again!!!
My father have Ocular melanoma and
but must take one of his eyes. After
several check that was promising now they unfourtunately find metastasis in the liver. But he dont show any symptoms. Last month he have a leverperfusion and after lots of fighting he now fight to come back from the huge operation.
But we dont now yet if it have effects on the tumors.
Have someone heard about perfusion or have done it?
Daniel from Sweden
Daniel, I'm very sorry to hear about your father. Go to the site mentioned above http://www.tustison.com/ocu-mel_listserv.shtm. It has great information, a lot of people who are going through treatment or with relatives who are, and information on doctors and the most advanced treatments. Stay informed and keep looking for answers. Not a lot of doctors have experience with this cancer. It's very different from regular melanoma.
Hello. My wifes name is Tammy too, & she too was diagnosed with a choridial melanoma yesterday. She is only 42 & is very scared. We too are a family of faith & believe in the power of prayer & God's will & healing power. Her tumor is up against her optic nerve, which is bad from what Ive read. Her tumor is also 9.9 mm tall & needs to be treated right away. Do you know if the eye institute treat her immeadiatly? How can we contact them? Can you tell us the best person to talk to? Thanks & God bless!
Dave, I'm so sorry to hear about your wife's diagnosis. My mom was referred to the Wills Eye Institute in Philadelphia (she and my dad live in Maryland). I believe that once she was referred, they were able to get her in to see a specialist as soon as possible. The specialists know how serious these diagnoses are. While I cannot remember the exact name of her specialist, I the specialist was married to another specialist, and together, they were writing textbooks, teaching doctors how to treat these very serious eye diseases. I've googled a few things and cannot seem to find their names right now. (My mom's diagnosis and procedure were many years ago--maybe 7 or 8 years ago?) Did you wife receive a referral to a specialist? My thoughts and prayers are with you. I know your faith will be an anchor for you as you are on this journey.
Hello again. I was able to contact them today & schedule an appointment for her on the 15th of June. They will see her that day & perform the surgury 2-3 days later, which is much sooner than we can get treatment here in Kansas City. Now I just have to figure out how to get there & pay for accomodations, as she is disabled, & I lost me job 2 weeks ago. Any suggestions anyone? Thanks again. Dave
Malignant Melanoma is a type of cancer which originates on skin. It can appear as a mole. It is even found in younger age bracket. It appears in the leg for females and for males, it is found on chest or back area. Those who have dark skin tone, are less likely to develop melanoma. Immediately diagnosing is very important, else it can worsen the situation. If anyone observes symptoms of it, should consult to doctor immediately. For more information on it, refer Malignant melanoma
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