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extrascapular involvement on my lumph node- damn!

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

Finally heard back from the surgeon last night who had said following surgery the 1 lymph node that was + for SCC popped right out and was encapsulated.  

He did have the pathologist look carefully around it an they found extrascapular involvement so now I have to have rad/chemo for sure.  Anyone else have this on the path report or have knowledge about it?  

hwt's picture
hwt
Posts: 1987
Joined: Jun 2012

Sorry you've had a need to find our site but glad you did. I guess you can look at it as being spared the decision of rads or not. I had SCC but of my jaw and there was extrascapular involvement of one or two lymph nodes which were surgically removed. Did rads and Cisplatin like many others here. It's hard but doable. I should say, the tx is easy but the side effects are hard. You can do this!  From posts that I have read, I would say more people have some lymph node involvement that not.

Candi

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

was on my pathology report....just that one needle biopsy had me entering the world of chemo and rads.  I had NPC (nasopharyngeal Carcinoma....that's behind the nose)....with two enlarged lymph nodes, one on each side of my neck.  From there the ENT gave me the phone numbers of both the radiologist and the oncologist which I had to contact myself Frown (at that point I was thinking I've got to get out of this podunk town and get myself to a big center....like doesn't this sound like I should be getting referred by the Dr. himself????)....it all turned out alright, tho.  As it turned out tho, I got just as good of care, modern equipment, and good Drs. 

It's going to be ok....really.  Like Candi said....the treatments are doable, the side effects can be trying, however.  It takes a while after you're done with everything to come back....BUT you do come back.  Sticking around here....asking questions as you go through treatment will make this even more doable.  There's lots of people here with lots of ideas to make this as comfortable as it can be.  The Drs. do the doctoring.....ah, but here is where the details on how to get thru it are taken care of.  Things the Drs. don't even think of because they've never actually gone through treatment.

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

Hi, Our oldest daughter lives in Swan Lake Mt. the boonies.  I was asking about extracapsular extension as I just learned about last nite when my surgeon said I will have to have rad/chemo.  Have since found a great study from Wash. medical center in St. Louis Mo.  which has actually graded this from 0-4 and prognosis is ok with all but a 4 which predicts mets and reoccurance.  So that is worth knowing about.  I called my MDs office to ask what the grade is but have not heard back yet.  Hoping for a 1-3.

PJ

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

Your daughter is just a hop, skip and jump from me.....about 35 miles. 

p

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

Are you in Kalispell or Polson or thereabouts?  We love it there and and I visited my grandbabies the week before surgery.  Took them to Glacier to get their Ranger Badges among other things.  Their favorite place Gma took them to was Kehoes Agate Shop.  PJ

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

It's just so cool when I hear that one of us has connections close to me.

p

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

I agree!

Roar's picture
Roar
Posts: 248
Joined: Mar 2013

I had an unknown primary with one lymph node involved which I had removed and was told it was well encapsulated and it did not try to extend outwards. However I was given about 40 rounds of rads and 3 chemo citsplatin - 1 on week one of my first rad 1 right in the middle of rads and the same same day as my last rad which by the way was the toughest of all. All I can tell you is to enjoy your favorite foods from now until rads and chemo start and do not worry about gaining weight as you will soon go on the best diet in the world and as you will probably not be able to taste them again for a while. Also on the days when you have chemo and the day before and after drink as much water as you can hold in addition to the hydration they will administer 

good luck my fellow warrior

Ralph

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

Hey Ralph, I just gained 1 lb. dropped 2 sizes since the surgery 2 weeks ago  because I could not swallow. My pain after surgery was a 10!  Everything I like tastes kinda like cardboard now (they took out a lot of tongue base).  I eat very healthy (Dr. Joel Fuhrman's anti cancer diet) am having smoothies and juicing and taking tumeric and turkey tail muchroom supplements and exercising daily.  Thanks for the hydration tip.  I suppose they had to give you rad as the primary was unknown?  PJ

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

ralph, what does encapsulated mean?

ty.

dj

PJ47's picture
PJ47
Posts: 339
Joined: Sep 2013

I think MD meant the tumor was intact and had not spread outside.  When it spreads outside it is calle extracapsular.  I spelled it wrong on my post sorry.

Roar's picture
Roar
Posts: 248
Joined: Mar 2013

But my take on well encapsulated was that it looked like a nice clean marble and did not try to spread or attach itself to other areas - ot hats how the Dr. Explained it

debbiejeanne's picture
debbiejeanne
Posts: 2584
Joined: Jan 2010

roar & pj, thank you.

dj

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