Melanoma & Skin Cancer support: Introduce yourself and connect

Hi, I’ve had 11 skin cancer removal surgeries: 2 melanoma and the rest were SCC and BCC. Important to get checked everywhere. Currently, I have 3 month exams in central FL and start at Mayo Jax in Aug to get on the 3D scanner wait list.

@tangledpuppet: what an awful experience! Was this an office that specializes in ocular melanoma? If so - and if this is a practice that has come recommended or is associated with favorable reviews for treatment - I'm wondering if perhaps there is a way you can possibly circumvent this way of scheduling an appointment or ask to speak directly to the office manager, at the very least to report the manner in which your call was handled, should you feel so inclined. It's a difficult enough time, made even more so when coming upon situations as you describe.

There is general information about ocular melanoma here: https://www.mayoclinic.org/diseases-conditions/eye-melanoma/diagnosis-treatment/drc-20372376 for treatment at Mayo should you be near one of the locations. I'd also recommend looking through or posting under this heading: https://connect.mayoclinic.org/discussion/is-anyone-familiar-with-choroidal-melanoma/ to inquire if anyone who has posted there may have any leads for you.

Additionally, for locating providers in your area who may specialize in choroidal melanoma, have you tried contacting EyeMelanoma.org, the American Academy of Ophthalmology (https://www.aao.org/) or the American Society of Retina Specialists (https://www.asrs.org/find-a-specialist). AIM for Melanoma (https://www.aimatmelanoma.org/) may also be able to provide some direction.

Please let me know if any of these leads help in obtaining the second opinion you seek.

Well the online appointment request person finally called, but it was horrible. First she argued about my daughter’s legal sex, then after some weirdly worded screening questions (in the past 24 hours have you had new: list of existing eye symptoms). Then I was abruptly dismissed saying- appointment rejected, see your local opthalmologist

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

@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 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.

@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?

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

@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?

I was just diagnoticed with Melanoma Skin Cancer on my leg