Deleted
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Post by Deleted on Apr 27, 2016 17:45:51 GMT
UPDATE: I got this email from my cousin just now.
I wanted to update you on things with Mom...
She was taken very good care of by the people at the several clinics and doctors' offices she visited in the Salt Lake area yesterday and today. Yesterday was a full day of tests and x-rays. This morning she had an ultrasound on digestive organs that are typical areas for metastasis from ocular melanoma and then a scan of some sort on her eye to get an actual measurement of the tumor.
The test results were expedited and made available this afternoon. The tests were clear of any signs of metastasis!!!!! She will need to have her left eye removed due to the size of the tumor, but she will be with us for many years to come.
Needless to say we are thrilled that it hasn't spread (at least into the main areas that it normally does). Those cataracts on her eyes may just have saved her life. She does have cataracts too but had she not had issues with cataracts, her story may have ended differently. I am sad that she will lose her eye but we are overjoyed that it doesn't look like she will lose her life.
Once again a huge thank you to all the amazing peas.
__________________________________________________________________________________________________
My aunt found out yesterday that she has melanoma in her right eye. I am super close with my cousin. He is like a brother to me. His dad died a year and a half ago. Our grandma died barely over 3 years ago. I am devastated for him.
I guess they will be referring her to a specialist in Salt Lake. We don't know if it has spread of how advanced it is.
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Post by refugeepea on Apr 27, 2016 17:48:21 GMT
Just the name melanoma and in the eye AND specialist in Salt Lake honestly does not sound good. My friend died from melanoma and she saw a specialist in Salt Lake at the Huntsman Cancer Institute. I hate to be a Debbie Downer and it may be in the early stages, I would just prepare myself for some possible bad news.  |
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Deleted
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Post by Deleted on Apr 27, 2016 17:52:28 GMT
That's what I am worried about. My aunt on my dad's side of the family had melanoma that turned into breast cancer and is going through treatments right now. (Luckily that was a stage 0, I didn't even know stage 0 existed). This just isn't looking good. I talked to my cousin and had to hold it together. He is normally so upbeat and laid back. He didn't even sound like the same person. I can't imagine how he is feeling. They just found out yesterday so he is still processing it.
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melissa
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Post by melissa on Apr 27, 2016 18:57:28 GMT
I read about it a little when I was being evaluated. I had a new spot that had not been seen before. It turned out to be a nevus (a mole). Who the heck knew you could get them there?? It never came up in my medical training! I was watched for a few months and it didn't change.
So the deal is that if it is just there and not too advanced, the 5 year survival rate is nearly 100%. They will do a work up to see if it is anywhere else (did it spread and is this actually metastatic from another body part are the questions the docs will be trying to answer).
@me, melanoma does not turn into breast cancer and breast cancer does not turn into melanoma. She either had a stage 0 melanoma on the skin of the breast or she has stage 0 breast cancer which is also called DCIS which is a condition of the breast tissue that is considered pre-cancerous in some circles as it is not invasive. However, breast cancer AND melanoma i the same person or even in the same immediate family is an indication for genetic testing. It would be most important for that aunt to see a genetic counselor and get the appropriate testing, no matter how old she is because it could have major implications for the extended family. This is a pretty new field and not all oncologists are up on it.
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Post by dewryce on Apr 27, 2016 19:13:27 GMT
I am sorry for her diagnosis and will hope she has caught this in the early stages! It's not often you see odds as good as the ones Melissa posted.
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Post by bigbundt on Apr 27, 2016 19:58:02 GMT
The daughter of someone I work with had ocular melanoma. I don't know if there are different forms and I'm not sure what stage it was at when they found it but I do know what she had wasn't common for someone in her 20s and it was very aggressive. She went to a lot of specialists in either the Boston or Philadelphia area.
I hope they caught it early enough for your aunt and that the odds are as favorable as Melissa says!
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Post by mikklynn on Apr 27, 2016 20:07:22 GMT
May I just add that you need to take a deep breath? New treatments are being approved almost daily. There is a new immunotherapy drug approved for treatment of melanoma, called Opdivo. Not all cancers are a death sentence. I'm not an oncologist, I am an engineer who has been forced by DH's cancer to learn a lot!
I hope your aunt has early stage cancer and does well.
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melissa
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Post by melissa on Apr 27, 2016 22:42:27 GMT
Oh yes! What @mikklyn said! I wasn't even thinking of that. I found the stats for early detection quite reassuring while I was in my 6 month waiting period. But, I'll echo what she said. I have a friend who had a rare form of melanoma. I do not remember the name. She went through treatment and had a recurrence in her lymph nodes 2 years later. She was able to get one of the newer immunotherapies for melanoma and has had no evidence of disease since then.
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Deleted
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Post by Deleted on Apr 28, 2016 6:54:04 GMT
I read about it a little when I was being evaluated. I had a new spot that had not been seen before. It turned out to be a nevus (a mole). Who the heck knew you could get them there?? It never came up in my medical training! I was watched for a few months and it didn't change. So the deal is that if it is just there and not too advanced, the 5 year survival rate is nearly 100%. They will do a work up to see if it is anywhere else (did it spread and is this actually metastatic from another body part are the questions the docs will be trying to answer). @me, melanoma does not turn into breast cancer and breast cancer does not turn into melanoma. She either had a stage 0 melanoma on the skin of the breast or she has stage 0 breast cancer which is also called DCIS which is a condition of the breast tissue that is considered pre-cancerous in some circles as it is not invasive. However, breast cancer AND melanoma i the same person or even in the same immediate family is an indication for genetic testing. It would be most important for that aunt to see a genetic counselor and get the appropriate testing, no matter how old she is because it could have major implications for the extended family. This is a pretty new field and not all oncologists are up on it. I am so glad that yours turned out to be a mole! I am sure that was really scary already going through cancer. My paternal one is the one who had skin cancer and now breast cancer. (Though I could've gotten it wrong and it could be skin cancer on that part though I could've sworn she said she found a lump). I know my aunt said my cousin was worried about it being genetic. My aunt on my mom's side has always lived a pretty healthy lifestyle except she worked in a casino for many years and was surrounded by second hand smoke. Other than that she doesn't smoke, doesn't drink, maintains a healthy weight in her 60s a weight I am enviable of, and has a great support system. Hopefully we will get answers soon. When I talked to my cousin he said since they just found it yesterday they were trying to get her in right away with this specialist. Apparently this specialist specializes in eye cancer. I had never heard of a specialty like that. I hope they can get her in right away. I don't have the email in front of me as I am on my phone but I know it's something like occular cholora melanoma. She also does have cataracts in both eyes. But those cataracts may have saved or prolonged her life. A simple eye appointment was never suppose to end like that. Thanks for sharing your experience! |
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Deleted
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Post by Deleted on Apr 28, 2016 6:59:15 GMT
May I just add that you need to take a deep breath? New treatments are being approved almost daily. There is a new immunotherapy drug approved for treatment of melanoma, called Opdivo. Not all cancers are a death sentence. I'm not an oncologist, I am an engineer who has been forced by DH's cancer to learn a lot! I hope your aunt has early stage cancer and does well. You are so right! I'm just worried about her but especially about my cousin. Yet I know worrying won't change the outcome either way. I am so sorry you have to go through it with your DH. Sometimes I. Think an illness like cancer is harder on those you love. |
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Post by kluski on Apr 28, 2016 9:01:50 GMT
Are there symptoms associated with this dx?
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Deleted
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Post by Deleted on Apr 28, 2016 13:09:01 GMT
My friend has it on her lungs.
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Post by Sorrel on Apr 28, 2016 13:56:07 GMT
My DH recently was tested for this because of a dark spot in his vision. It turned out to be something benign, but I read a lot about ocular melanoma while we were waiting to hear what his was. It sounds like if you catch it while it is small it can often be successfully treated. The scarier thing is if the eye cancer is a metastasis from somewhere else in the body, commonly breast or lung cancer. I hope your aunt's is small and isolated and that she can be successfully treated!
Edit: Your aunt's is probably ocular choroid melanoma? That's the most common kind.
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gram2sojo
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Post by gram2sojo on Apr 28, 2016 14:55:53 GMT
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Post by bigbundt on Apr 28, 2016 16:47:50 GMT
That is who I work with. Incredibly sad. What is shocking is that it was an unusually high amount just a year ago with only 5 young people who was diagnosed with it. Now it is at 12? Something is going on and even though the CDC dismissed concerns a year or so ago, I'm glad they are getting more testing at the school. ETA: I think the form of cancer that is talked about in this cluster isn't very common so I don't want to worry the OP.  |
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Deleted
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Post by Deleted on Apr 30, 2016 4:02:14 GMT
Are there symptoms associated with this dx? For my aunt, she had a hard time seeing things but she also had cataracts in addition to the tumor in her left eye. I never thought I would be grateful for cataracts but I think they very well may have saved her life. |
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Post by Delta Dawn on Apr 30, 2016 6:00:44 GMT
May I just add that you need to take a deep breath? New treatments are being approved almost daily. There is a new immunotherapy drug approved for treatment of melanoma, called Opdivo. Not all cancers are a death sentence. I'm not an oncologist, I am an engineer who has been forced by DH's cancer to learn a lot! I hope your aunt has early stage cancer and does well. I think you are pretty darn cool!  |
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Post by mikklynn on Apr 30, 2016 13:27:29 GMT
Great update! I am very happy to hear she will have a good outcome.
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caro
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Post by caro on Apr 30, 2016 13:30:40 GMT
That's very good news!
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Post by Sorrel on Apr 30, 2016 13:47:08 GMT
So glad to hear this positive update!
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valleyview
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Post by valleyview on Apr 30, 2016 14:21:18 GMT
Great update! I hope that she continues to get good news post surgery.
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Post by hennybutton on Apr 30, 2016 15:09:50 GMT
My mother-in-law had ocular melanoma. They tried to treat it with little beads of radioactve material, but end up removing the eye. She was cancer free for about 7 years after that, but during a screening at 7 years, they found cancer in all her organs. Somehow, the melanoma had taken over in less than a year. The doctors said it was definitely a metastasis of the ocular melanoma. I wonder if sh would still be alive if they hadn't tried to save the eye.
I learned two major things about ocular melanoma:
1. Ocular melanoma is not the same as the skin cancer variety. It's more aggressive.
2. The patient will need annual cancer screening for the rest of her life. She should demand it if the doctors don't. It's not one of those five-years-and-cured cancers.
I hope your aunt does well and has many long and happy, healthy years.
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uksue
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Post by uksue on Apr 30, 2016 17:34:36 GMT
So happy to read your update and pray it will all go smoothly for her.
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Post by KelleeM on Apr 30, 2016 17:37:53 GMT
I'm happy to read your update!
And losing an eye isn't as horrible as you may think. I lost all sight in one eye almost 6 years ago and get along very well most of the time. I wish her a full recovery and many more years!
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kate
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Post by kate on Apr 30, 2016 19:30:58 GMT
So glad to read your update.
My grandmother had retinal melanoma. They were able to treat it with a radioactive plaque. Ironically, her son was an artist who had a job painting replacement eyes to match the original color. She said If she was going to have to lose her eye, at least she knew she'd get a beautiful replacement. She ended up keeping her eye, though.
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Deleted
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Post by Deleted on May 4, 2016 3:35:57 GMT
I thought I would update this. My aunt is having her left eye removed a week from today.My cousin and aunt and uncle own a business together so he will stay at the shop while his step dad accompanies his mom to Salt Lake.They have pretty good insurance it sounds like so I am grateful for that. Thanks everyone for all of your comments. It will be tough to lose one eye but I'm grateful she wont lose both and that it hasn't spread!
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Post by LavenderLayoutLady on May 4, 2016 9:48:17 GMT
Thanks for updating.
I'm glad to read that her cancer has not spread to other organs.
(((hugs)))
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