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July 26, 2014 at 8:53 pm #22119celebratehomeParticipant
I have been reading many posts here trying to educate myself on behalf of my Father for the journey that I know is before us so I am grateful to you all already! I will essentially be his caretaker, and he has just been diagnosed with Melanoma but I do not know the stage yet. What I do know is:
* 2 locations with largest being clark level 5, greater than 12 mm depth on back, mitotic figures 9, age 69, ulceration, vascular invasion.
He lives 7 hours from me and so he came to me for help with the biopsies which is how it was diagnosed and I helped him start process of getting enrolled in Medicare and also VA Benefits of which he had done neither. He has NO insurance so we ended up at a VA Hospital and all they could do for now is take a head and body (to pelvis) CT and they said only left side of thyroid appeared swollen so I hope that is a good sign. However, the dermatologist said his melanoma was the worst he had seen in his 20+ years and that he needs a PET scan and a brain MRI asap. My Dad is planning on leaving to go home today without these tests bc we were told that we have to wait to be assigned to a VA primary care doctor who then refers to an oncologist and THEN we can have scans/tests but no one could tell me how long this might be. Also my dad is already talking about trying to get something done in Virginia where he lives instead of here in SC which I understand except that I do NOT think he will get it done. Already overwhelmed and confused as to next steps and yet we have only begun. My most urgent concern is how to expedite these tests through the VA and if CT looked ok, does this mean it may not have spread yet (though lab report says vascular invasion) and should I let him get tests where he lives or encourage him to do all here in SC? Suggestions appreciated. Please forgive lengthy post. Thank you!!
MonicaJuly 26, 2014 at 11:45 pm #65057Catherine PooleKeymaster
I’m uncertain your father has advanced melanoma, that would mean he has tumors in various places in his body. So he has high risk lesions, did they do sentinel node biopsies when they removed the lesions? That would be telling of spread. I would get out of the VA system if you can and take him to a specialist, a university based hospital. He qualifies for medicare, so get that going. Talk to the social worker at the hospital. University of Virginia has specialists but if he won’t go, look to your local university based hospital. One step at a time: get him on medicare first.July 27, 2014 at 1:55 am #65058celebratehomeParticipant Thank you for your reply Catherine. You are correct…in fact I changed the subject line because I do not know for certain it is advanced in spite of what the doctors are presuming. I only know the pathology report per my original post. To my knowledge no nodes were checked yet. I will follow up with his Medicare as well since it sounds like this may offer better care/options. We were informed that since our VA hospital is near the Medical University of SC (MUSC) that many tests are performed at the university although covered by the VA. Again all new to me, but I am learning much by each of your posts and your willingness to share your experiences. Will share an update once the necessary tests are performed and we know if it has spread. Thank you again.
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