Melanoma & Skin Cancer support: Introduce yourself and connect

@grammato3
Does that help? Drastically! I really appreciate you passing it along.

Since I am a patient at Mayo Jacksonville since 2006 and been seeing a dermatologist there for decades now this is really good information.

I have the ability like all Mayo patients to contact their medical providers and asked questions, etc. I am going to asked my dermatologist about this and hopefully I too can be added to the list.

I want to thank you again for the excellent information and explanation.

@jc76: I'll step in here for a moment with this document that explains the overall technology of 3D imaging: https://www.mayoclinic.org/departments-centers/radiology/sections/overview/ovc-20469630.

3D scanning is a relatively new advancement for use specifically in dermatology. The benefit of this type of imaging is it basically "maps" an individual's moles, spots, and any type of skin lesions to allow for earlier detection of skin cancer. The aim and results to date has been the reduction in unnecessary biopsies and improved identification of melanoma.

I believe Mayo Jacksonville has the 3D scanner in their dermatology unit, with Rochester and Phoenix approved for obtaining one by end of this year but I will need to verify on the dates.

Does that help?

@chanda79
I am at Mayo Jacksonville since 2006.
I have had so many BCC removed by MOHS can't remember them all. I had one SCC but no melanoma. I was seeing dermatologist every 6 months but had a change of dermatologist and said new protocol if you have not had melanoma your schedule is once a year.

The caveat to that is call for appointment anytime for a suspicious area.

I see you mentioned 3D scanner. I am not familiar with that. Can you add some information on that and what it is?

@tangledpuppet: I'm glad you're persevering; that is NOT the type of experience we like to hear about at Mayo and very out of the norm. There is definitely some helpful information on the site https://www.mayoclinic.org/diseases-conditions/eye-melanoma/symptoms-causes/syc-20372371 with which you'd already appeared familiar and I do see a link there for appointments, my error for not realizing or inquiring if you were in proximity to one of the Mayo locations. If there a weakness in any of the links in any capacity such as you encountered, truly, we do need to hear about it in addition to you continuing to be a strong advocate for your daughter's care.

You'll note in the link provided above, there is also an a Melanoma Support Group that meets monthly online via Zoom calls held the second Tuesday of every month at 6:30 central time. Led by a wonderful LCSW who is on staff at Mayo Rochester and Jacksonville, it is open to patients and their families - even those not actively treating at Mayo. https://connect.mayoclinic.org/event/melanoma-support-group-meeting-2-39ee06fe/

Absolutely, there is a lot of connection amongst those of us treating for melanoma as I'm finding out through my involvement in various groups. We're here to help one another through this challenge. Let me know when Leah been able to help you.

I have a lot to learn. I don’t know about 3D scans. I hope that provides helpful information for you. Jax = Jacksonville?

Thank you, if really was a bad experience. I did it through the “start a new appointment request “ that appears on this page (through Mayo) and requested Rochester,MN where she’s been à patient before. I should have taken a different route for a referral. The person handling those callbacks for opthamology was ignorant and just mean. She gave me another reason to cry. I appreciate your kindness so much.
Apparently there’s a person named Leah in charge of handling care coordinator for chorodial melanoma and our person at university of Iowa hospital will reach out. With rare disease I guess it’s a small world

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.