After some scans, appointments, discussion since 01/15 it has been determined my suspicious parotid mass doesn't show up and is most likely loss of facial muscles causing backing up of saliva into a thick goo.

Of more concern is I noticed a lump under my chin the morning of my scan so I marked it for them. It turns out I have an enlarged submental node that showed up first back on 7/25/2011 but nobody mentioned it because it was so small and the radiologist overrode the doctor ordering an MRI and cancelled a subsequent scan with contrast so no scans with contrast from then until 2/4/2013. The node is not huge, 11 mm x 4 mm, but feels much like the lump in my throat as it started. I was thinking FNA when I thought it was new but leaning towards living life and rescan 4 months. My otolaryngologist is suggesting the same but more because he is not concerned at the size it is. My decision is based on my state of emaciation and doctors not even wanting to give me a feeding tube back in September because of how I looked.

I spent about 3 months under hospice care and after hearing so much about comfort care they shifted into a look at you time to die and loaded me up on meds and tried to convince me to lie down, get comfortable and medicate out for weeks in December. I self weaned off the methadone in 1/4 of the time they wanted after they overdosed me by mixing methadone and diflucan. I literally went from almost paralyzed from the waist down to walking almost a mile in 3 days, 20 laxatives a day to zero in 3 days with no bowel problems other than a bit of pain but regular ever day for 6 weeks! I spent weeks rebuilding the core and Friday I walked 3 miles in the am, went to the gym for 6 miles on the recumbent bike, light workout on machines for almost two hrs and another mile walk in the afternoon. First, BOOYAH hospice! I sent them away January 12! Second, thank you for reading so much. I just wanted to give some background with a little "never give up" thrown in for good measure.

I don't want to disturb the beast if it is there since 2011 and risk spreading since I would not be a candidate for salvage surgery, chemo or radiation because of the lower motor neuron disease progression. I would appreciate your input.

Ed

Can then not simply remove the mode? If not I would leave it.i would also get another opinion on possible treatments if you it is scc. Since your reasoning for not having a biopsy is there is no treatment available anyway, I would want to know that for sure. Congrats on the exercise.

The submental area is common for BOT recurrence and the "norm" would be ND of some type with many nodes removed for biopsy and hard to get them to take just a node out. I have some hard cysts that they keep telling me are sebaceous cysts from radiation and they keep getting bigger so they want to take a couple of them out at the same time. I guess to answer your question, they would not want to just remove one node and unless I get bulked up and put back some more of that 100 lbs I have lost they don't think I would make it through a surgery at this point. I think that gives me a few months reprieve and an opportunity to refire some atrophied muscle. It is more the entire neck and facial muscles are fasiculating like crazy and further nerve damage could result in inability to hold my head up and there doesn't seem to be a good case to make that happen faster than it already is. I have no pectoral muscles left except the one they would want to use. Makes it quite the dilemma.

Your experience sounds similar to mine, after my bad chemo reaction when I was eventually left to die in a nursing home, and was paralyzed from the waist down for 10 months, lost 110 pounds. I'm still trying to piece the puzzle together, and know most ailments I endured, and still cant move my toes, some muscles 3 years later. You could wait to see if there are changes in the node. I would rather find out, and do a FNA. Each situation is different, but I had salvage surgery, RND, in 2011 after my initial chemo incident in 2009, and radiation. After that, I had two more neck dissections, pec flap, 2 more radiation treatments, and chemo, so they still may be able to treat yours while it's smaller, and while your heath is good. I understand your apprehension not wanting to go backwards after gaining so much back, which was my worst fear too, not the cancer, but was glad I did what I did.

I want to say my health is good but my biggest problem is every doctor I see just looks at me with sad eyes and "reminds" me I am at the end stage of motor neuron disease with hospice probably my best possibility. Your story does sound like mine Paul! I almost wish we would have chased this before I lost the last 30 since that was when most muscles atrophied. I was at 118 in Sept from 211 but am at 140 today which they said was impossible so no quitting here. Just looking at it as if I have not found the right doctors yet. When I get discouraged I just think or Marica, you, Christine and of course my #1 hero, Charm! It seems so much more doable and thank you!

Ed

I went from 245 to 130 in less than a month. I gained 50 pounds back since, minus losses after treatments here and there, and 173 now, which latest was nutrient deprivation, which can be gained back, unlike metabolially from cachexia. Your situation is unique, came back, and walking 3 miles! I was never told why I couln't walk, which bothers me the most...weakness, muscle atrophy, septic shock, neuropathy? I'm thinking Gallium Barre Syndrome, in addition to Steven Johnson Syndrome like ailments I had effecting the mucous and skin. I get a kick out of reading my assessment report that I would never recover. Like you said, no giving up!

I like your story. The mind is a strong thing just like the will. Curious, did your ALT and B1 go do near zero? That's what i found that turned around the cachexia and the neuropathy, respectively.

Ed

The ALT seems like it was the only labs in the normal range, but I only have a few months blood work, 88 pages lol. I was basically unconscious in ICU from Nov. 30th until mid January, but the weight loss was after I blew up from the sepsis, probably went over 250, and then dropped rapidly. I was given everything to help put some weight back on.

I was sent in to see the otolaryngologist by the neurological pulmonologist in advance of CPAP/BPAP titration next week. The first question was why have I not gone in for the FNAB. I reminded him he suggested waiting 3-4 months. He said he wanted a chest X-ray and the FNAB as soon as possible. Everything turned out fine with a reactive node. WHEW!

That's a relief!