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Just a quick update. I am at the 5 year NED stage now. I no longer require scans. I’ll see my dermatologist every 6-12 months for life.

I try not to think about it too much and trying to live my life again but it is hard.

Tragically some of those that helped me either here or via messages have since passed away. I wish I could thank them again for all they did for me.

Thanks Rhonda. This is what I am following:

 

https://www.mskcc.org/experience/patient-support/nutrition-cancer/diet-plans-cancer/cardiac-diet

Thank you Celeste! It was half the size when I woke up today. Yesterday it was well over an inch. This is a relief. I haven’t reached out to my oncologist yet. Going to see how it looks by Tuesday and if it hasn’t improved I’ll reach out.

I’m assuming any reduction in size like this is a good thing. I wouldn’t expect a cancerous lymph node to reduce in size at all. Am I right there?

My CT with contrast in July was fine, had an MRI in August which was fine, and the CAT scan in October after the incident was fine too.

Wondering if I should request another MRI or is there another type of scan I should ask for? They seem to think it is vestibular.

I should note the only real comment that caught my attention was the following:

Lymph Nodes: Prominent level IIA lymph nodes previously described are
slightly decreased in size measuring 8 mm on the right and 9 mm on the left
(series 5, image 241). Prominent left level VA lymph node measuring 6 mm in
short axis and previously 4 mm (series 5, image 304).
IMPRESSION:

1. No definite evidence of nodal metastasis.

2. Left level Va lymph node is slightly increased in size but does not meet
criteria for enlargement and does not exhibit suspicious features. This is
indeterminate; recommend attention on follow-up imaging.

Lymph nodes increase & decrease in size all the time. Not too worried about that one guy going from 4mm to 6mm at all, but yeah worth keeping an eye on.

Thank you. That experience does not sound fun at all I’m sorry. How often do you need to have your eardrum drained?

Thank you Cindy. Yeah I don’t have any headaches really ( I do have one right now but I think it’s just from tiredness. Didn’t sleep too well last night. First headache I’ve had in months and it’s not bad at all). No nausea at all either thankfully. Actually since my surgery in November on my nose & then to remove the tumor in January I haven’t had any migraines or headaches at all really. Everything has been fine except for the dizziness. Hopefully it is just vertigo and hopefully the ENT has more ideas. The paranoia in me is worried it is brain mets but the scans are clear. I think I just need to relax lol.

Thanks caman. I was initially diagnosed as 2b. The surgery was successful, the cancer was localized and removed, my lymph nodes were clean and so was the WLE area.

I’ll ask Dr. Salama about the immunotherapy on Monday. I suspect I won’t qualify as I’m technically NED right now. I asked about it before and she said I would have had to have been 2c to qualify but I can ask again

Congratulations. That’s awesome!

Thank you Edwin! That helps. The pain you had, did it feel muscular? How are you doing now?