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Appreciate advice

Appreciate advice

Posted By
Anonymous
8/13/2019 7:38pm
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Replies: 4

I’ve been blessed with 6 years NED after stage 3b. I opted for monitoring only. Other than bloodwork, I’ve never had any scanning since one year post op. And stopped going to Boston oncologist visits three years ago. I do continue with 6 month derm checks ( with almost every six months MOHS or excisions of squamous or basal cell ). For unrelated shoulder issues, I had a mri this week. Incidental findings: 7mm probable cyst right Vallecula , low tongue base. Smaller cystic signal fo I I left linguinal tonsils, Vallecular region. I’m wondering if this is something to follow up on on my own as the nurse that gave me the results said she didn’t know if I should be concerned . Sorry can’t get my cursor to jump up and correct smaller cystic foci, left linguinal tonsils.
Any opinions would be greatly appreciated
Primary left upper arm

MelanomaMike - (8/13/2019 - 7:59pm)

Hi Anonymous, boy, i imagine after a diagnosis and staging of 3b, id be a lil more proactive with the scans, CT/PET, i get the whole blood testing, but i i think that only finds traces of elevated Antibodies correct? Wich would mean anything foreign in the body thats not suppose to be there, its definetly a heads up test but not always accurate for Melanoma, on the contrary i just pulled up on the web in Australia, a new type of Blood Testing that may be 100% accurate called the Oxford Gene Technology Array....
Keep us posted on those cyst's, i hope thats all they are!!

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Anonymous - (8/13/2019 - 8:56pm)

Thank you. That’s one of the reasons I quit going to Boston oncologist. No scans, a quick feel of my groin, told him unless he had X-ray vision , I saw no reason to make the drive.

RichInLife2 - (8/13/2019 - 10:52pm)

I don’t know who you saw in Boston, but I was very happy with the care I received at Dana Farber. It doesn’t sound like you’re seeing a melanoma specialist, because I can’t believe they wouldn’t want to do follow-up scans for 3b. Just as a personal data point, I had an swollen lymph node that was misdiagnosed as a sebaceous cyst. I’m not saying you have been misdiagnosed, but I would certainly want an opinion from a melanoma specialist and radiologists who are trained to look for melanoma.

Good luck!

Anonymous - (8/14/2019 - 9:11am)

Hi, Rich, this is all that added to my confusion. I just looked up my records. I was seeing the melanoma oncology dept at Beth Israel medical center. I was diagnosed 5/13, I had 4 CT scans every 3 months post diagnosis and one head MRI and nothing ever again. One of my best friends was diagnosed one year after me, same stage, same surgeon, same melanoma dept but different oncologist. He’s still having scans, only difference was he chose the interferon ( he regrets it ). I lost confidence when my oncologist said scans aren’t necessary after the first year, so I couldn’t see driving from the Cape through rush hour traffic to have a five minute appointment and blood work my PCP could do. I had a bout of debilitating vertigo and oncologist said , well that’s not how Mets to the brain presents sooo, my ENT(local) said Ha! Famous last words and ordered an MRI, I think I will get his opinion. I reached out here because I can not tell my family my concerns and I knew I would get the encouragement I needed to listen to myself .