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#191877 02-28-2016 01:34 PM
Joined: Feb 2016
Posts: 7
Member
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Member

Joined: Feb 2016
Posts: 7
Hi,
I'm new to this forum. Ive finished tx. 3 month PET scan scheduled for 3/15. Went back to work 6 weeks after treatment finished so Im not complaining!. Got through the mucous now just dry mouth, taste slow to return, not using my G-Tube etc. Now I'm getting worried about reoccurrances even though I'm not sure the first one is gone. Also worried about neck dissections. Wondering if I made the right decision to wait and see if I need salvage surgery. Now my tissue is radiated. Reading survival rates and they are horrible. Even the HPV+ ones arent fantastic. Hi and always hoping to gain knowledge!


Karen
Nurse/49 year old non-smoker/rare casual drinker
2008 Papillary Thyroid Ca with RAI and Thyroidectomy
9/2015 L Pyriform Sinus SCC HPV+ mets to two lymph nodes
T3, N2b, M0 = Stage IVa
10/14/15 Tonsillectomy and Panendoscopy
10/27/15 RADS 37 tx and weekly Cisplatin Chemo
03/15/16 3 month PET scan scheduled
kdot2003 #191879 02-28-2016 05:42 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! Im sorry you have a need to join our group. You definitely are in the right place to learn about your disease and the treatments and recovery. Sounds like you are doing pretty good if you were able to return to work only 6 weeks after finishing rads.

You are going thru what almost every survivor does. We all think about "what if"... The hard part is to move past the worrying which is not easy at all. After going thru so much its only natural to fear having to go thru it again. All any of us can do is find the very best medical team we can, do what they tell us and trust that it will work. Try to focus on what is within your control. One thing that you can work on is something in your control, your intake, this will help speed your recovery. Hopefully you are eating enough without using the feeding tube. Every single day for at least the first year after rads you need a higher caloric intake (at least 2500 daily calories and 48-64 oz of water).

This probably will sound strange but you are lucky to have HPV+ as your cause for getting OC. Im not one to pat much attention to statistics, but I do know HPV+ patients have better survival rates. The survival rates are showing the 5 year point of patients. No, its not the best numbers but many beat the odds and survive. Im one of those who somehow managed to survive when the odds were against me.

Best wishes with your continued recovery.







Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
kdot2003 #191882 02-28-2016 07:07 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
Welcome.

It does take time to get past the ghost of recurrence. I just passed three years since diagnosis and my last visits with my ENT and MO finally have me really putting OC in the rear view mirror.

Just keep a positive perspective on life and enjoy each day you have that is filled full of life and keeping worry to a minimum.

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com

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