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Jeani Offline OP
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My husband is 8 mos post-Radiation and 3 1/2 months post RND. The dr's said they'll follow up with us monthly for a year but all they do when we go in is look in his nose/mouth/throat, feel his neck and the inside of his mouth, scope his throat and tell us it all looks clear. I'm very suspicious how scientific this is? Wondering if we should have/expect a cat or Pet scan within a few months after surgery? The knot that started all this he had for along time and they never would commit that it was cancerous until they took it out at surgery then said it was all cancerous...wonder how much they can tell by just 'taking a look around' the areas?


Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved
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Jeani,
With me it was about the same. ENT didn't want to call for a PET until a year after RT. RO called for one about 5 months out and it wasn't useful, because I was still too "hot" from the treatments.
ENT checked me monthly, in the same manner as your husband. Everything was fine until 10 months past RT they found a "soft spot", byopsy proved SCC present, so I'm off to surgery again and back down that road.
They really didn't think mine had or would spread to other areas of my body, which is why each check up consentrated on the ear, nose, throat areas. After my second byopsy it proved them correct, the only cancer "hot spots" in my entire body where the two in my mouth....good luck...



57 YO, Dx 10/08 with oral cancer, Surgery 11/08 followed by six weeks of RT treatment with the MASK.
Follow up on 10/15/09 found a soft spot, which turned out to be SCC. Don't know if I can receive more radiation or not since I've already received full dose.
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At Moffitt I was given a CT scan w/ contrast for head area after about 3 months that also included my upper lungs. It showed "areas that can not be excluded" in my lungs. Dr's said not to worry.....yeah right so they did another one in another 2 months and while the first areas had cleared there were 2 new spots in the lungs so we did another one in another 3 months and this time finally I got an all clear.

Not offering advice, just what happened to me.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I am 2 years out from my last surgery. I now see my surgeon every 8-12 weeks, my RO every 4 months, and my MO twice a year. In addition, my GP sees me every 3 months for all of the other usual issues - BP, etc. There are also nutritionists and psychosocial oncology specialists available at my call at our Cancercare Center.

I get a contrast CT every 6 months. I get an annual chest x-ray for some "nodes" that we evident when I was first diagnosed 5 years ago.

If I ever have a lump/bump, my Surgeon is very accommodating and usually sees me to biopsy / look at it within a week or so.

So far, the above has worked. I continue to be thankful for each day and greedily ask for more!

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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We go every 4 months for an oral exam, 1 chest xray every yr.
Would feel so much better if we had a PET scan every yr but our Dr said that most insurance companies are raising a fuss over the cost. If needed tho the Dr would order one ASAP.
Any new bump tho we will be in that office immediatly.




caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
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Jeani Offline OP
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Thanks, I guess I'm just so leary as we're at the Va and they use Dr's from the neighboring hospital (which for the surgery was UCLA) on rotation so we never get the kind of care that Pandora talks about...I don't even know if we're going back to the RO as we went last month (2 mos after RND) and he said there's no more he can do for us (maxed out RT) so he didn't know why we were there?
Guess I need to ask the ENT surgeons again when they'll do a scan as when I asked last time they said what they were doing was the complete exam, every month?


Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved

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