Malignant melanoma of the choroid in the eye

Posted by twocents @twocents, Nov 1, 2018

My husband was diagnosed with a malignant melanoma in his eye last May. He had a radioactive plate inserted in his eye for four days the beginning of June. The melanoma has a 50% chance of spreading to the lungs, lymph nodes and liver. Has anyone in this group experienced this diagnosis?

Liked by treychic

Hi @twocents, Thanks for starting this discussion. @grammalori @donie @nanasova posted about choroidal melanoma quite some time ago. I'm not sure if they are still responding to email notifications, but hopefully one of them will return to share their experiences.

While we wait for others to join the discussion, I'd like to learn more about your situation. How often does your husband return for follow-up appointments? How has the cancer affected his vision?

Liked by treychic

Thanks for your response. Since the surgery he has follow up appointments with his retina specialist every three months. It takes six to eight months for the tumor to start shrinking. He had an appointment last week, and the tumor is not as red or "active" and is slightly smaller. He has lost some vision in his eye, but not dramatically. Their main concern is the chance of the cancer metastasizing, so he sees his oncologist every three months, with a full body scan every six months. The Oncologist follow up appointments/scans will continue for ten years.I'm not sure about the retina specialist appointments.

@twocents

Thanks for your response. Since the surgery he has follow up appointments with his retina specialist every three months. It takes six to eight months for the tumor to start shrinking. He had an appointment last week, and the tumor is not as red or "active" and is slightly smaller. He has lost some vision in his eye, but not dramatically. Their main concern is the chance of the cancer metastasizing, so he sees his oncologist every three months, with a full body scan every six months. The Oncologist follow up appointments/scans will continue for ten years.I'm not sure about the retina specialist appointments.

Jump to this post

That is encouraging news, @twocents. I can imagine that the worry about metastasis nags at both of you. How are you coping with that?
You might be interested in this discussion:
– Coping with anxiety while waiting https://connect.mayoclinic.org/discussion/coping-with-anxiety-while-waiting/

Are you able to put cancer out of your mind between visits to the oncologist?

Liked by twocents, treychic

Thank you for your response and information. We have only had one visit to the oncologist, the next one is December 17, and at that time he will have the scan. We are coping ok – try not to think about it too often, since there really isn't anything we can do. My husband is very private and never complains. But I try to get him to talk about it every so often so he doesn't keep it all bottled up. I know he's worried, but he covers it up quite well. I'm sure we will be nervous as the 17th of December approaches…

Liked by treychic

was diagnosed in March, no spread as of now

Liked by treychic

@twocents

Thank you for your response and information. We have only had one visit to the oncologist, the next one is December 17, and at that time he will have the scan. We are coping ok – try not to think about it too often, since there really isn't anything we can do. My husband is very private and never complains. But I try to get him to talk about it every so often so he doesn't keep it all bottled up. I know he's worried, but he covers it up quite well. I'm sure we will be nervous as the 17th of December approaches…

Jump to this post

@twocents If you haven't seen the Ken Burns documentary about Mayo Clinic, one of the patient cases in the story is about melanoma of the eye, and that patient did very well. You can see the documentary on the PBS website (I think for a fee) and you can purchase a copy from PBS or Mayo. I thought it was wonderful, and that patient with the eye cancer was pregnant during her treatment. Maybe that would help to see a patient experience this treatment and with a good outcome.

Liked by treychic

@jenniferhunter thank you for the information. I will check it out. Every bit of information on this will definitely be helpful and relieve anxiety for sure!

@twocents

@jenniferhunter thank you for the information. I will check it out. Every bit of information on this will definitely be helpful and relieve anxiety for sure!

Jump to this post

My husband had his full body scan, blood work and oncologist appointment today. We are happy to report that at this point the cancer has not metastasized. The doctor did say that if it does metastasize to the liver that it is automatically stage 4 cancer,. Which we don't understand why that is so. He did say that the chance of the cancer metastasizing is 50%. We also asked if there was anything my husband could do to up his chances of his cancer not spreading and he said no…not even diet or exercise would do anything to help prevent this. Has anyone heard of anything we can do to help stop the chance of this metastasizing? Thanks so much.

@twocents

My husband had his full body scan, blood work and oncologist appointment today. We are happy to report that at this point the cancer has not metastasized. The doctor did say that if it does metastasize to the liver that it is automatically stage 4 cancer,. Which we don't understand why that is so. He did say that the chance of the cancer metastasizing is 50%. We also asked if there was anything my husband could do to up his chances of his cancer not spreading and he said no…not even diet or exercise would do anything to help prevent this. Has anyone heard of anything we can do to help stop the chance of this metastasizing? Thanks so much.

Jump to this post

@twocents, any cancer that spreads (metastacizes) to other sites in the body beyond the original tumor is called stage 4 cancer or advanced cancer. While diet and exercise may not actually prevent the cancer from spreading, it can help improve health and strength if it should come back. Remember the other side of the equation. There is a 50% change that it will NOT spread. I would focus on that.

May I ask how old your husband is?

@colleenyoung

@twocents, any cancer that spreads (metastacizes) to other sites in the body beyond the original tumor is called stage 4 cancer or advanced cancer. While diet and exercise may not actually prevent the cancer from spreading, it can help improve health and strength if it should come back. Remember the other side of the equation. There is a 50% change that it will NOT spread. I would focus on that.

May I ask how old your husband is?

Jump to this post

Thank you Colleen. I appreciate the information. Yes we are trying to focus on the 50 percent chance that it won’t spread. I’m trying to encourage my husband and help him to eat healthy and exercise. He’s not one that has ever done either so it’s quite and challenge for me and frustrating. My husband is 67 years old. Thanks again

Liked by treychic

@twocents

Thank you Colleen. I appreciate the information. Yes we are trying to focus on the 50 percent chance that it won’t spread. I’m trying to encourage my husband and help him to eat healthy and exercise. He’s not one that has ever done either so it’s quite and challenge for me and frustrating. My husband is 67 years old. Thanks again

Jump to this post

@twocents, I get that. And you may have to accept that he won't change unless he finds the motivation to do so within himself. We had to accept that with my dad. So hard to do.

You might be inspired (or frustrated further?) by this discussion in the diabetes group where a small group of exercise adverse (originally) are encouraging each other through a gentle 12-week exercise program.
– Lighten Your Limbs With Friends https://connect.mayoclinic.org/discussion/lighten-your-limbs-with-friends/

Here's the link to the program they are following: https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/walking/art-20050972

Does your husband like to walk? Might that be something to do together?

Liked by treychic

@crobi1974 My husband had a plaque with radioactive beads sewn on to his eye for four days last June. The doctors told us it would never be completely gone, that it would just shrivel up kind of like a raisin. At appointment with the retina specialist they said it wasn’t as active as it was and may have shrunk a little bit. He also goes to the oncologist every three months for blood work and every six months for a full body scan to see if it has metastasized. So far so good! Good luck to you.

My daughter is only 26 and was just diagnosed with a Choroidal Melanoma. She gets the PET scan this week and then the radiation oncologist will put in the order for the plaque radiation to be constructed for her and then put on her eye. She hasn't had any vision loss and discovered it through a routine eye exam. We just found out all of this 1 week ago. We have already been to 4 different doctors. It is overwhelming for her, but I am angry. Angry that a 26-year-old mom of a 2-year-old has to get something that is so uncommon for her age. They are looking at her like they had never seen this before, and in all fairness, they don't know what the prognosis is because most studies only go out 10-15 years after diagnosis. Well, that only puts her at 40! As her mom, I am feeling so helpless and I know they are moving fast enough but for me, it isn't. I still have more questions, so we keep messaging the place to get answers but I can't find a consensus online about certain things. Except, yeah – 50% chance of spreading to the liver over her lifetime. THAT IS NOT ACCEPTABLE!!! I cannot handle those odds right now. I am stuck in the anger phase. I am snapping at my family – (not her) but wear a mask at work all week of "yes, thank you, I am ok. just pray" and I want to just scream and shout. Sorry for venting but I don't have anywhere or anyone else to spill this out to right now. Please know I am keeping everyone who is dealing with this cloud over their life in my thoughts and prayers, but how do you keep going – is it like looking over your shoulder, or did you eventually move away from these feelings… It is so new for us right now. My poor girl.

Hi @treychic and welcome to Connect. It must be so heart-breaking to be going through this with your daughter. I hope that you can find some comfort interacting with this community who will always allow you to vent and get your anger out on the situation you are currently in.

I wanted to introduce you to fellow Connect member @twocents who has experience with this cancer and may be able to provide you support.

Back to you @treychic how is your daughter coping with all of this?

Please login or register to post a reply.