What do we have in common - revised questions

Scambuster said:

Keep them coming - great responses
I will either do a spreadsheet or I am trying to find a Free online Survey we can send the link and people can then anonymously fill in information but even this data here is interesting. If everyone on our board can fill in the above, that would be great and we can send results to our Doctors. Can the next person add another few items & if folks can 'edit' and add these in:

Suffered from L'hermittes Syndrome ( ) Mild /Severe & How long.
Dry Mouth - Severity (Short term / Long Term)
Loss of Taste - Y/N ? Short term/long term ?

& in Johns suggestion - maybe optional but :

Participated in Oral Sex ?


Tx Jen + all who have posted.
Scam

luv4lacrosse said:

SURVEY REPLY
How old at diagnosis (46)
Sex (M )
Smoker (N )NEVER
HPV + ( Y)
Type Of Cancer (SCC OF R TONSIL, SOME SOFT PALLATE AND 21 TUMORS TO R NECK 19 TESTED POSITIVE )
Cannabis User (Y )IN MY TWENTIES
Drinker (Y MORE WHEN REALLY STRESSED OUT )
Ever been serevley sunburned (Y )
Eye Color (BR )
Skin complexion (FAIR )
Ever had Skin Cancer ? (N )DID HAVE TWO SUSPICIOUS LOOKING MOLES BIOPSIED AND NEGATIVE
Ever been Stressed for a long period of time ( years) (5 )MAJOR STRESS WITH ONE OF MY SONS AND RUN A CONSTRUCTION CO. IN A CRAPPY ECONOMY.
Were you tired before diagnosis (Y)THOUGHT I HAD MONO OT LYME DISEASE
Have you had Chronic Fatigue (N )
Ever subconsciously worried about getting cancer (N )NO FAMILY HISTORY
Obese (Y/N)NO, 5'9 235 LBS BUT A LIFELONG POWERLIFTER. THE MEDICAL CHARTS WOULD SAY I AM OVER WEIGHT.
Fingernail biter ? (Y)CHRONIC. WHY???
General health prior to Dx. Poor Fair Good ? (GOOD, HAVE HIGH BP )
Suffer from Gastric Reflux/ Stomach ulcers ? (Y)TAKE PRILOSEC EVERY DAY
Diet (Vegetarian >> Carnivore)THE BIGGER THE STEAK THE BETTER HIGH PROTIEN.
Heritage (ADOPTED, ENGLISH AND ITALIAN. LAST NAME KRAUS EXPLAINS THE ADOPTION. )
‹ Hospital Stay - Suggestions? Trach Removed ›
I HAD NO SIGNS OR SYMPTOMS. WHILE BRUSHING MY TEETH ONE MORNING I NOTICED THE LUMP IN MY NECK. LITERALLY POPPED UP OVER NIGHT.

Hondo said:

Hi Jan

Hope this helps
How old at diagnosis (54)
Sex (male)
Smoker (yes 25 years ago)
Drinker (No)
Ever been serevley sunburned (No)
Eye Colour (Dark)
Skin complexion (medium)
Ever been Stressed for a long period of time (yes) Work, Home, Church
Was you tired before diagnosis (No) Workaholic
Ever subconciously worried about getting cancer (No)

D Lewis said:

Interesting variation in the results
How old at diagnosis (54)
Sex (F)
Smoker (Never)
HPV + (HPV-16+. Tested at my request. Local ENT had no idea what I was talking about.)
Type Of Cancer (T1N2cM0 base of tongue with mets to submandibular lymph nodes on both sides. Primary tumor was less than 2 cm. One lymph node was 3 cm. One was 1.5 cm. Several sub-cm nodes were also hypermetabolic.)
Cannabis User (No)
Drinker (Occasonal beer and wine. Not a heavy drinker.)
Ever been severely sunburned (Probably. I was a kid before SPF sunblocks and I spent summers on the beaches in Maine.)
Eye Color (Blue)
Skin complexion (Medium - I tan.)
Ever had Skin Cancer ? (Nope)
Ever been Stressed for a long period of time ( years) (Not really.)
Were you tired before diagnosis (Nope. Didn't notice any symtoms except an enlarged lymph node.)
Have you had Chronic Fatigue (Never)
Ever subconsciously worried about getting cancer (No. I have a lot of relatives who smoke, and they are all in their eighties and nineties. No cancer in the family. Everyone died of old age.)
Obese (No. Slender most of my life.)
Fingernail biter ? (No)
General health prior to Dx. Poor Fair Good ? (Excellent, actually. Spend a lot of time in the high country.)
Suffer from Gastric Reflux/ Stomach ulcers ? (Never. Eat like a horse. Eat anything.)
Diet (Opportunistic Carnivore. Love fruits and veggies. Hell, I'd eat carrion. Oh, wait, I do. I love jerky.)
Heritage (English Scotch/Irish. Part workhorse. Hail from New England originally. Ancestors were all farm laborers or sea captains. Loved those cold winters.)

There are similarities, but no real commonalities here. Reinforces the importance of HPV+ status in the absence of smoking, drinking and heredity. Environmental causes don't seem to be playing a part here.

Deb

luv4lacrosse said:

SURVEY REPLY
How old at diagnosis (46)
Sex (M )
Smoker (N )NEVER
HPV + ( Y)
Type Of Cancer (SCC OF R TONSIL, SOME SOFT PALLATE AND 21 TUMORS TO R NECK 19 TESTED POSITIVE )
Cannabis User (Y )IN MY TWENTIES
Drinker (Y MORE WHEN REALLY STRESSED OUT )
Ever been serevley sunburned (Y )
Eye Color (BR )
Skin complexion (FAIR )
Ever had Skin Cancer ? (N )DID HAVE TWO SUSPICIOUS LOOKING MOLES BIOPSIED AND NEGATIVE
Ever been Stressed for a long period of time ( years) (5 )MAJOR STRESS WITH ONE OF MY SONS AND RUN A CONSTRUCTION CO. IN A CRAPPY ECONOMY.
Were you tired before diagnosis (Y)THOUGHT I HAD MONO OT LYME DISEASE
Have you had Chronic Fatigue (N )
Ever subconsciously worried about getting cancer (N )NO FAMILY HISTORY
Obese (Y/N)NO, 5'9 235 LBS BUT A LIFELONG POWERLIFTER. THE MEDICAL CHARTS WOULD SAY I AM OVER WEIGHT.
Fingernail biter ? (Y)CHRONIC. WHY???
General health prior to Dx. Poor Fair Good ? (GOOD, HAVE HIGH BP )
Suffer from Gastric Reflux/ Stomach ulcers ? (Y)TAKE PRILOSEC EVERY DAY
Diet (Vegetarian >> Carnivore)THE BIGGER THE STEAK THE BETTER HIGH PROTIEN.
Heritage (ADOPTED, ENGLISH AND ITALIAN. LAST NAME KRAUS EXPLAINS THE ADOPTION. )
‹ Hospital Stay - Suggestions? Trach Removed ›
I HAD NO SIGNS OR SYMPTOMS. WHILE BRUSHING MY TEETH ONE MORNING I NOTICED THE LUMP IN MY NECK. LITERALLY POPPED UP OVER NIGHT.

staceya said:

Interesting Idea. Thanks for
Interesting Idea. Thanks for posting!

How old at diagnosis (49 )
Sex (F )
Smoker ( Never)
HPV + ( +)
Type Of Cancer (SCC NPC stage 1 )
Cannabis User (barely a million years ago )
Drinker (rare )
Ever been serevley sunburned ( N)
Eye Color (B )
Skin complexion (Med olive )
Ever had Skin Cancer ? (N )
Ever been Stressed for a long period of time ( years) ( Sort of )
Were you tired before diagnosis ( N)
Have you had Chronic Fatigue (N )
Ever subconsciously worried about getting cancer ( sometimes )
Obese (N)
Fingernail biter ? (sometimes )
General health prior to Dx. Poor Fair Good ? ( Good)
Suffer from Gastric Reflux/ Stomach ulcers ? (N )
Diet (Vegetarian >> Carnivore) whatever did not run away. Reasonably healthy
Heritage ( Russian)

Current status ( 6 months post rads)
Taste (really started improving at 4 months out)
Saliva (improved about 1 month out)
Some studies I have read indicated that most new H&N cancers are HPV+ and 80% of people are HPV +..indicates a need for more oral screening to catch these before lymph node involvement, which seems to be the way most of these cases are found. My dentist is taking my case to a conference to emphasize the need to do a more thorough oral cancer exam. I had been telling my DDS of swallowing difficulty for quite some time. The mass was not seen until gag reflex evoked and then it was visible.

Stacey