Melanoma & Skin Cancer support: Introduce yourself and connect

@sandrahahn22 : I'm glad you found us here as I know from personal experience how terribly frightening that is to learn. You'll find many of us here have encountered similar situations and it's our goal to provide you with support, some guidance and answers to questions you may have - and allow you to simply vent your feelings whenever you may be so inclined.

I remember when I was first diagnosed I was overwhelmed and wasn't sure where to turn. Google searches were alarming. I've since learned that a lot of information on the web can be outdated and the statistics I was reading do not necessarily apply to current day as so many advances have been made. May I suggest a resource I found at Mayo: https://www.mayoclinic.org/diseases-conditions/melanoma/symptoms-causes/syc-20374884
You may want to proceed slowly with what you read, selecting those topics that apply to where you are now in your current diagnosis and recommended treatment.

Have you gotten any of those recommended next steps provided by your health care practitioner? How are you feeling overall since getting this news?

My name is Sheila. My 28 yr old daughter was diagnosed a couple of weeks ago with chorodial melanoma (within the eye). It’s relatively rare- especially at her age.
The tumor is small sized and suggested treatment was à radioactive plaque. Surgery is scheduled in about 10 days.
We’re both anxious about the immediate and long term “just waiting “
CT scan showed spot on liver, but follow up MTI determined it was à benign cyst. No metastasis yet. No idea what odds of that are since tumor biopsy wasn’t recommended

@tangeldpuppet: Thank you for reaching out to Mayo Clinic Connect; it's understandable this is an anxiety producing time for you and your daughter. I hope you will find some support, guidance and understanding here as you both navigate this unexpected and unchartered course.

There was a thread on this topic earlier this year: https://connect.mayoclinic.org/discussion/is-anyone-familiar-with-choroidal-melanoma/ so I'm going to look into cross posting your introduction to the discussion there as you're correct in both regards - it is a relatively rare form of melanoma and usually does occur in older individuals.

The results of the scan must have felt reassuring. Have you inquired about frequency of follow up imaging for surveillance?

Thank you for the kind words of welcome. Right now we don’t know the follow up frequency (dr mentioned 6 months).
Tomorrow I plan to pursue 2nd opinion on the foregoing of the biopsy. I think a 20-something person needs to know as much as possible about prognosis and whether the characteristics of the tumor are eligible for targeted treatment, prevention or clinical studies/ trials.
Telling someone under 30 to come for scans every 3-6 months “until something happens” is worse (in my opinion) than knowing more upfront- even if it’s bleak.

@tangledpuppet: Your daughter is fortunate to have you as an advocate. You've impressed me with the wealth of knowledge with which you've already armed yourself.

Even though I worked for many years as an RN and assisted people through the maze of healthcare, I found myself practically frozen at first when I got the diagnosis of metastatic melanoma. My husband helped me, much as you're doing now for your daughter, in sorting out information and obtaining a second opinion. I'd not been involved at Mayo yet at that time, where I've come to find information like this that may be helpful to you: https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/

In all transparency, I have to tell you I've been doing remarkably well on my own journey to date; the immunotherapy I started on in November has shown signs of resolving the tumor that had shown up on imaging in September. I have been so encouraged by progress in the field of melanoma treatment and have found organizations like Melanoma Research Alliance and the support group offered through Mayo to be extraordinarily helpful. Let me know when you're ready to explore more in depth.

In the meantime, can you let me know how the second opinion goes?

Thank you so much! I’ve just completed the appointment request. I appreciate so much that you shared your experience and insight.