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December 6, 2012 at 10:21 pm #20833TatonkalandParticipant
Hello everyone and thank you so much for sharing all your information with everyone!
For the last week I have been reading anything I can on Melanoma and treatments and found this forum.
I am a bit confused and trying desperately to understand all the lingo here.
My Fiancé had what he though a mole on his back that started giving him pain.
He went to a dermatologist and they removed it and sent it for a biopsy.
The dermatologists called him back in and told him he had Advanced malignant melanoma.
That it was probably sat stage 3 or even 4 by now. And not given very much information, was handed a pamphlet.
Panicking at his point, yes and knowing nothing about Breslow or Clark scale made it even more difficult assuming the worst.
We went to visit the surgeon the dermatologist recommended, whom did explain the Breslow and Clark scale at this time.
That helped immensely. The Dr. then scheduled him for the pet scan injections and surgery the next day..
Surgery was November 30th. I do not have the measurements as I see listed in some areas here.
Dr removed a six inch in length area surrounding the tumor and stated he had to go al the way down to the muscle on his back.
He also stated there were three lymph nodes lit up and that two others were possibly filled with tattoo ink, one was black and one was blue.
He removed ten lymph nodes all together. He placed a drainage vessel, that we are to empty 2-4 times a day and should only be seeing about 30cc a day.
We are seeing close to 200cc a day and no let up and it is leaking at times. Dr said we will just keep monitoring this.
Dr then stated he was not sure about cancer in the nodes, but that he would most likely need to have Interferon treatment.
Dr.stated they were doing a sentinal node biopsy and several had matted or grouped close together.
The Dr stated he was to have the pathologist report back today and we scheduled an appointment for today.
The reposts were not back, and we were not to happy with any thing he had to say which was nothing really except make another appointment for Tuesday.
Dr. was totally preoccupied and brushed off any questions and we were not sure we were even asking the right questions.
We live in a very rural area where there is not a huge amount of resources, we may need to either need to seek professionals in Ann Arbor MI or maybe go to Chicago IL for serious treatment.
So my questions are what are the right questions to ask?
What are we looking to accomplish next?
Does the oncolgist choose you or do you choose them?
Are there any steps in this new diagnosis we should follow?
Thank you for anyone’s help.
KateDecember 7, 2012 at 1:25 am #57937Catherine PooleKeymaster
You choose the oncologist and make sure they are associated with an institution doing a lot of melanoma research. Please check our Resources tab and Newly Diagnosed Tab in above this post. I would look at clinical trials, such as the Mage A3 or the IPI vs. interferon as possibilities. Go to: clinicaltrials.gov. But first find a center of excellence you can travel to by looking at our resource page. Let us know what you find out. BLUE
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