update and an annoyance

sweetblood22 said:

Update and annoyance
Wow. Wow. Wow. I think I'm rendered speechless. I just read what you wrote like three times and I'm still trying to wrap my brain round that. I guess I know that distant mets isn't good, but dead anyway? I think you and I both had unknown primary and lymph nodes removed, some positive etc. I would like to hear comments and imput as well. I'm glad your first pet came back Ned. As some of you may remember I never had any follow up scan. I dont blame you for being restless.

Glad your latest stretching went well. I know you'll know better in a couple days. My throat and stuff was always sore for a couple days after that. Also great news on the peg removal.

NIce... NOT
Well apart from the bedside manner issue, I hope you disagreed with the good Dr G, as I would with his 'if' prognosis. There are many folks who have been told similar and are still here many years later to reflect. You are doing the 'good diet' thing still and are open to further ventures to get fixed and rid of this beast, so if 'if' happens, will just mean going to the next step.

If you track down john23 and 2bhealed on other forums, they are both long term survivors I know (and there are many more) who were looking at grim news from their Doctors but have done things that obviously worked.

Hope the latest stretch does the trick Mick and that Tube will soon be history.

Scam

PS I know you were putting all the good stuff through the PEG but wondering if you are doing the MCP ?

micktissue said:

Thanks everyone
Just for the record, I've not had a dirty PET/CT scan. the good Dr was just saying, like we were talking about the weather LOL. Hondo, distant mets are when cancer cells show up anywhere other than the primary, not just in an organ, although in an organ would be a big bummer :-\

I was stage IV because I had local mets (in lymph glands) but the June PET showed nothing else anywhere so that's why the Drs are saying good prognosis, but I've asked anyway about the difference between in remission and NED and cured. My sense is that these are what you make them as recurrence or mets will mean not cured, not in remission, and not NED.

I came to terms with it tonight after reading Steve's great reply post (thanks buddy for keeping it real!) - I may as well be worried about dying in a car crash as recurrence or mets at this stage. I also found some psych stuff that talks about the emotional and psychological impact of not knowing and I'm right there with anxiety and worry. It's all helping me process the new normal (nod to Glenna) that includes the perspective of what a lifetime means.

Now I'm checking craigslist for a pogo stick in preparation for the PET scan next month. I plan on posting a photo. Don't know about the feathers, but I'll try!

Best,

Mick

Feather insertion is delicate matter
Careful with the feather insertion, Mick.

As for doc's 'keepin' it real' comment, well, I can relate. You know about my head/neck stuff, I'm sure, but I was later diagnosed with cancer spread like buckshot in both lungs and again in oral area. They said I had a minimum of 10 months to live.

Well, most of the buckshot was an infection, and there was only one cancer node. BUT they told me, if the biopsy on that small node in my lower right lobe (isolated even!) was mets, they would not continue on with surgery and we would go instead to palliative treatment, and you and I know what that generally means: chemotherapy until the day I say No.

The notion, apparently, is that if it has spread to one place, there is no way to discount its likely spread elsewhere, even if it is currently too small to see in those other areas. That is just a supposition.

Anyway, that's my experience.

Incidentally, they almost certainly did an endoscopy along with the dilation, so you should be fairly confident that your esophagus is clean. And if you are worried about your lungs, a common pioneering location for scc, ask them to do a pandectomy with next dilation, if there is one. This one covers the gamut, including a bronchoscopy, which might relieve some anxiety.

One more thing: immediately after my last dilation, I noticed some positive change, but was frankly a bit disappointed by the lack of dramatic effect. It has taken time to get to where I am really on a roll with this eating thing that everyone else seems to do . Be patient.

Sounds like you are in the best of hands, Mick, and it also sounds like you are doing quite well, beyond the expected anxiety and such.

Take care, my friend,

Joe