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Things that make you go "hmmmm".....

yensid683's picture
Posts: 318
Joined: Apr 2012

I say that because I'm coming up on the 1 year 'discovery' of my beast and wondered, when do we start our 'survivors' count?

When they discover the mass in your neck?  When the ENT snakes the camera out of your nose and tells you "you have a tumor on the base of your tongue?  When the pathology report comes back from the biopsy and your doctor calls to tell you "squamous cell carcinoma"?  When you start treatment?  When treatments end, or when you get your first clean scan results? 

It was almost a year ago that my ENT found the tumor, but I have yet to have had a clear scan (next Tuesday and I hope it comes back NED) so am I a 1 year survivor with 4 to go, or am I just getting to the point that I can start counting?


I was reading the label that comes with my flouride paste (SF5000) and the instructions from the manufacturer said to use a pea size amount, brush regularly and expectorate.  Not rinse, just spit.  How do we, the survivors of rads who have to eat like we were racoons, manage to spit out the foam/saliva/excess fluoride if we don't generate enough spit?  My dentist never said anything, beyond the pea size/brush regularly instructions....along with the brush after everything you eat, floss daily, use a non-alcohol mouth rinse if you want to keep your teeth.  Hmmmmmm


Any ideas?

fisrpotpe's picture
Posts: 1349
Joined: Aug 2010

your new birthday is the day you are told "you have cancer"

think about it, that means you have survived already. so your a survivor the day you are told. 

i also look at it as a new beginning as just hearing those ugly words change everything. so that give you a new birthday. mine is January 17, 1996

i use more than a pea size amount of the same SF5000. i just want to make sure there is enough to go around my mouth. after applying i try to spit out the extra's. i then leave it for 30 min. or as long as possible and rinse. i just do not want to swallow it. 

start with waterpic with as hot of water as you can stand, floss, brush with sonicare tooth brush with bioteen gel dry mouth toothpaste, rinse with waterpic, apply flouride. i do this 3-4 times per day with flouride 2-3 times per day. best thing i did was when i added the waterpic to my regiment. 

enjoy your new normal


Posts: 1914
Joined: May 2012

Hello !

Every person is different in their experience with this.  Do your best, and keep on doing it every single day.   I asked my ENT about the count down a few months ago.  He was very annimated with a twenty year figure....and then I said no where am I now ?  He said that after surgery I could say that I was a survivor of 13 months.  Please stay positive and don't go there with the count downs as I have done.  With my dx, the survival rate at 5 years is excellant....and goes down by over half each year past this.  ICK !  No way to think or live !  You are a survivor and have been since the day you started fighting back at the beast !  I know my words are just that words.  Each of us has to figure out how to deal with each and everything that smacks us between the blinkers.  I'm praying for only positives for you, and better days ahead !   Katie 

D Lewis's picture
D Lewis
Posts: 1576
Joined: Jan 2010

You are a survivor from the moment you know you have cancer. Celebrate that fact. Every day we are given is a blessing.


Kent Cass
Posts: 1898
Joined: Nov 2009

In the past, it was established that your Anniversary is the last day of treatment- rather than when you are told you have C, or are C-free (which they cannot positively state as fact for several years post-tx).

My Survivorship began in early-April of 09, as that's when my tx ended. I was told I had C in mid-Dec of 08, but knew I likely had it a month earlier when the two lymphs ballooned on my neck. If one counts from the day you knew you had C- then I am already a 4 1/4-year Survivor, rather than the nearly-4 I consider myself.


CivilMatt's picture
Posts: 4296
Joined: May 2012



I count my survivor anniversary from the last day of treatment.  That is the date all my check-ups are predicated on. 


I keep note on the anniversary of discovery, but that is simply the day I felt the lump (did not get confirmation on cancer for 52 more days).  Many H&N members spend months or years chasing the demon around till he is cornered and fesses up to his true identity.


I felt my treatment plan was based on eradicating the beast and I count everyone of them as part of a whole.


If you have no spit and you have to spit.  The directions are only guidelines, do what you got to do.  Use two pea sized amounts and rinse and spit.  Anyway, if you have no spit the rinse water is just artificial spit.  The point being you are doing everything you can to help your teeth.  Good luck!


Almost 1-year,


Matt the rookie



November 11, 2011 – Lump detection


December 23, 2011 – Official diagnosis “CANCER”


March 23, 2012 – End of treatments


March 23, 2013 – 1-year anniversary (actual appointment scheduled for March 12, 2013)




mixbrix's picture
Posts: 1
Joined: Jan 2013

It starts on your last day of treatment, radiation in my case.  Both the surgeon and radiation doctor say the same thing.

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