Previous Thread
Next Thread
Print Thread
#199205 10-07-2019 12:36 AM
Joined: Sep 2019
Posts: 95
Likes: 13
Paan Online OP
Supporting Member (50+ posts)
OP Online
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 95
Likes: 13
Hi,I have stage 4 tongue cancer HPV negative does anyone have any percentage survival figures for tobacco related to gue cancer thankyou

Paan #199208 10-07-2019 10:51 AM
Joined: Jun 2013
Posts: 345
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 345
That's not the sort of information anyone here would have. We're not doctors, just patients or caregivers. And everyone's case is completely different from everyone else's. I can tell you that there are people here who've beaten what appeared to have been unbeatable odds ... and when they give advice, be sure to listen! But the percentages don't matter nearly as much as doing what you and your doctors decide is the best treatment for YOU, and then you taking the very best care of YOU that you possibly can. That will be a highly individualized thing, since we all react differently to treatments, have different complications (or even no complications), and so on.

((hugs)) I saw your other post about having surgery soon. It looks like you've already been reading and getting prepared ... so you're off to a good start!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Paan #199209 10-07-2019 12:24 PM
Joined: Aug 2010
Posts: 72
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 72
If you like statistics, here are the data for the USA. It does not break down smokers or HPV.
https://seer.cancer.gov/csr/1975_2016/results_merged/sect_20_oral_cavity_pharynx.pdf

KristenS #199210 10-07-2019 09:53 PM
Joined: Sep 2019
Posts: 95
Likes: 13
Paan Online OP
Supporting Member (50+ posts)
OP Online
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 95
Likes: 13
Thankyou kristen,I am so glad to have found this group these posts have helped me get stronger and more prepared I will keep posting my progress after my surgery

slash #199211 10-07-2019 09:56 PM
Joined: Sep 2019
Posts: 95
Likes: 13
Paan Online OP
Supporting Member (50+ posts)
OP Online
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 95
Likes: 13
Thankyou slash for the info

Paan #199212 10-08-2019 02:59 AM
Joined: Jun 2007
Posts: 10,507
Likes: 3
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 3
Overall the 5 year mortality rate for OC is around 50%. This figure has remained fairly steady for the12+ years Ive been a part of OCF. When looking at the numbers/commonly shared stats... one person dying every hour of every day from OC can be very frightening! You can read much more about this sort of thing on the main OCF site in the Understanding section.

Im one of the few who doesnt pay much attention to mortality stats. To me they're a counter-productive Something thats stuck with me for over 10 years is a saying a close friend said. He was a very wise member who passed away several years ago. He would tell members his opinion of mortality stats.... "You will either make it or you wont." Im an example of that saying! When I was given my 3rd OC diagnosis, the odds of my survival were stacked against me being in the teens. I almost refused treatment due to thinking I wouldnt survive anyway. Fortunately, I was able to overcome my 3rd round of OC surprising everyone, especially my doctors.

If you can focus on what is within your control, the entire ordeal will be easier to get thru. Mortality stats are just numbers! They really dont mean too much, they're not anything you have control over. But... you do have control over your ability to follow doctors orders, take in at least your daily minimums of calories and water, keep your pain under control. Those 3 things are what will make the difference in how easily you get thru everything your future holds. No, its NOT easy but it is doable! Especially when you have OCF in your corner to help you with info and support. We've been there and fully understand how frightening it is to face an unknown enemy and whats necessary to eliminate it. Our outlook is different than your medical team. We have endured the ups and downs of battling OC and we share our tips with those just starting out.


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
ChristineB #199231 10-10-2019 05:48 PM
Joined: Sep 2019
Posts: 95
Likes: 13
Paan Online OP
Supporting Member (50+ posts)
OP Online
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 95
Likes: 13
Thankyou christine ,very true when I have all you guys for info and support I don't need stats

ChristineB #199246 10-13-2019 03:14 PM
Joined: Sep 2018
Posts: 9
Member
Offline
Member

Joined: Sep 2018
Posts: 9
I absolutely love the encouragement and common sense approach in this post. Nutrition, hydration, and pain management. Thank you


Diane Walters Van Dyke
Hopeful55 #201437 06-29-2022 09:02 PM
Joined: Jun 2022
Posts: 27
Likes: 1
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jun 2022
Posts: 27
Likes: 1
Looking at the date on this thread....it's probably a case of better late than never.
I too was diagnosed with stage 4 tongue cancer in 2015...however, and thankful...mine was HPV related.
According to the Doctor...HPV related cancer is easier to treat...and the survival rate is far higher than other oral cancers.
Of course...due my cancer being at stage 4, l wasn't given many treatments options...so they opted for powerful doses of both radiation & chemo
which unfortunately left me with brutal side effects which l am still dealing with to this day..
However..l am now 7 years into remission...and happily, still alive to tell the tale. !!!

Good luck


KITTY CAT.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,884
Newest Members
RCnola, mpaw, Spencer, Kevin5, CancerSurvivorSpou
13,041 Registered Users
Forum Statistics
Forums23
Topics18,122
Posts196,667
Members13,041
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2022 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5