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February 1, 2015 at 1:59 am #22342
Hi! I just found out on the 26th from my ENT I had metastatic melanoma. So yesterday I went in for a PET scan and then met with the oncolgist who reviewed the results before I met with him also. He said he wants to me to go back to the ENT to have my lymphnodes removed and then go in for a CAT scan, MRI and bone scan… Mind you I have never had any reason to suspect I would have melanoma. My Derm has always cleared me and anything he did think was questionable he would take off and send off to be reviewed and everything was always ok.. I am not a sun person to begin with…
Confused to say the least with everything going on… I have 10 yr old and 5 yr old daughters so the wife and I are trying to figure out the best approach with everything… We are wanting to get a second opinion but not sure to do it before we have the surgery and more scans or should we wait until after so they have more information? Not sure what it normal when it comes to that or has far as what the oncologist wants to do with the surgery and more scans….
Any help or guidance would be appreciated.. thank you!February 1, 2015 at 1:24 pm #66250Catherine PooleKeymaster
Hi and welcome,
This is a very overwhelming time for you and I’m glad you found us. In my opinion, getting to a melanoma specialist first is very important. Are they calling this cutaneous melanoma (skin) or mucosal (of the mucous membrane) Doesn’t sound like a lot has been explained to you. Where do you live? Specialists are not always nearby and we have scholarships to help with travel/lodging if needbe. It truly makes a difference to be in the hands of a melanoma expert. You can also email me personally:
email@example.com additional guidance or call our helpline, 866-463-6663. Try to take it a moment at a time and don’t get rushed into treatment.February 1, 2015 at 2:04 pm #66251 Catherine,
Thank you for the response. They have not called it anything besides melanoma so far. We live in Birmingham, AL. It’s a very head spinning thing to go through for sure. It’s a confusing time that’s why we weren’t sure what was normal or not on what the doctor wanted to have done. Thanks!February 1, 2015 at 4:23 pm #66252LinnyParticipant
Sorry to hear about your diagnosis. Getting diagnosed with melanoma is a head-spinner for sure.
It is very important for you to seek out a melanoma specialist. A general oncologist will have knowledge of it, but may not be up to date on the latest treatments, clinical trials, and studies. A melanoma specialist deals with it on a daily basis and is the best individual to get you through this.
Please take Catherine up on her offer for guidance.February 2, 2015 at 3:58 pm #66253
Thanks for the reply Linny. I was able to get an appointment for a second opinion through UAB Kirklin Clinic with a doctor that deals with melanoma. Downside is earliest I could get is nect Thursday the 12th. My current doctor is putting a hold on the scans and ENT follow up until I have my 2nd opinion. Not sure if that is normal or not… This who thing as been a confusing,scary time not only for me but my wife and 2 young daughters.February 3, 2015 at 7:47 pm #66254Catherine PooleKeymaster Let us know how things turn out at your appointment and if we can support you.
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