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update and an annoyance

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi folks. 3 days out of the second esophageal dilation and things are good. I am swallowing a little better than before and will know more in a few days once the sores from the procedure heal and I can take this throat out for a real test drive. I'll keep you posted. However, it looks like I'll be keeping that date with Dr Feng, GI Man, for removal of the g-tube next Wednesday. Yay!

There is one thing annoying me (which is a euphemism for the fact that it really scares the **** out of me). Prior to the procedure the really great surgeon Dr G and I were discussing why I'm not getting a 6 month PET/CT followup (had one in June, NED). The healing from these procedures is likely to produce false positives, so wait for them to heal. Then he adds, and I quote, "plus if you have distant mets, well, you're dead." I kid you not.

I don't want to spend any time on Dr G's bedside manner. He's a good guy and knows I like it real, so I can't blame him for giving it to me that way. I get that distant mets is not good prognosticating factor and I feel like the buzzkill guy to even bring it up here, but with whom else can I share this and get some decent. reasonable feedback?

I did some research (like I never did this before, right?) and cannot find papers that fit my case close enough to guess what my prognosis is. I'm obsessing about it, I know, and I'm really annoyed. But hell ARGH!!! WTF???

Anyway, can you guys help me get my head around this? I'll have a PET/CT in a month or so (looking forward to dancing, feathers, pogo sticks, eeeeeeeeeeee and all the rest) making this rant a bit moot, but I'm restless!

Thanks for your time.

Best,

Mick

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

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 ?

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

That's all I could think..Wow!!! I think I'm still in a state of shock from reading this. I've always been in a mild state of panic because both my med and rad oncs keep saying "I'm in remission...for now, and I'll only need to see you WHEN it comes back". Not very encouraging but I'm 15 months out and still in remission. I like total honesty with no sugarcoating from my docs but this is a little too honest.

I wish I could be of more help but unfortunately I have no statistics or research information that would be of any help to you.

Stay strong and positive, your PET/CT scan is going to come back clean and then you will be able to do the pogo dance :)

Great news on the PEG removal...one more step towards your new normal.

Stay well,
Glenna

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

Maybe you should just end it all now. No more restlessness, no more anxiety, all that good stuff don't ya know. Just jokin man but why the hell would that even be said? I go Tuesday to the ENT to get my results. I understand very well the anxiety of waiting. I had just a CT, but my last scan was the end of May.

Pretty soon you will have a bullet wound like me and that is great news. Hope the throat has been sufficiently repaired this time.

Best,
Steve

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mick,

Great news on the dilation and getting de-pegged! I like honesty too, but as for the doc's bedside manner - not that I'm a smart-arse or anything, but I can't imagine what would have came out of my mouth when that was said.

I do like to show off my "bullet wound" though. Don't understand why no one wants to view it when I pull up my shirt???

Positive thoughts!

Greg

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I like to say that we live in south central Petaluma and now I'll have the wound to prove it!

Thanks man.

Mick

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

That was basically my response to Dr G. Yeah it's all good. Much better today.

Thanks man.

Mick

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Oh My Goodness. So your PET is just a "am I gonna die soon?" test and not a "What, if any action now?" test? I agree; WTF? I can provide NO help on getting your head around the "if you have distant mets, you're dead" comment. Wow

Very glad to hear the throat already feels like there's lots of ground gained - here's to more as you recover from the procedure.

You'll have to let us know if your GI is a "distract and yank" kind guy. Mine was a powder puff - put me out for the party.

Oh, and I think you should ask Santa for the pogo stick - don't want to get caught out shopping for it yourself.

oldcamper
Posts: 27
Joined: Oct 2010

Mick

How was your last blood test? were the white cells high or normal? how was everything? as for the coment well some doctors have limited skills or abilities based on location or equipment available to them. If he says he can't do anymore then I would say its time for a new Doc. or Cancer Center. the one here in Fort Worth, TX has that new cyber nife and other out of this world technology to target cancer anywhere without doing alot of damage to other parts of the body. so I wouldn't take thats all folks from anybody.

Just my opinion.

kevin

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

Distant Metastasis is when a tumor goes from the primary to other organs in the body but don’t worry you are an old fart like me and all that can happen is for you to start to smell a little more now and then. Great news on the dilation, don’t let the PET or Dr G get you up-set.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

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

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

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