Struggling waiting diagnosis

What you say is correct.  HPV positive cancers tend to cause very little or no pain until they are pretty advanced.  One tumor in my neck reached 32mm,  and I felt nothing.  I could push on it, poke it.....no pain at all.  and yes, not attached to anything,  completely contained in a lymph node which just stretched and grew to accommodate it.  They told me that I never would have actually died of the cancer directly because that tumor was compressing my artery,  and if it had of went on untreated one day in a few months time I would just feel dizzy,  and fall over dead.  They never found my primary but radiation to the area they were sure it came from obviously killed it off anyway.

If your lump in painless, hard, but feels like it has a bit of movability to it,  then if it is any sort of cancer at all, it is probably scc hpv positive.  If you have no distant tumors,  which is unlikely with that type of cancer unless you left it for years,  cure is almost a sure thing.  Even with distant spread,  your chances are still pretty good.  If someone is running book on this,  I'll liquidate all my assets now and put it all on you have this beat and recovered before xmas.

By contrast,  my hpv negative cancer started as a small lesion, became sore while still quite small,  grew fast, became ulcerated, spead into bone quickly,  started eroding that and causing what felt like tooth aches, where I had no teeth. and spread to lymph nodes where it caused pain even before there were any detectable cancer there.  P16 negative is a different animal altogether.  The only negative to p16 positive is that people often don't even know they have it until it is really advanced.  It dies easy with treatment and comes back far less often.  Having said that,  don't smoke, don't drink.  That fact you got any sort of cancer in mouth at all should be enough reason to exclude putting any carcinogenics in your mouth from now on.  You oral cells my still contain dormant hpv modified precancerous cells,  which can be activated by carcinogenic.  Radiation cures the cancer,  but it can also leave you more vulnerable to developing cancer from smokes, alcohol, etc.  So don't be like me and have a few smokes here and there and the odd beer,........and then go on to get worse cancer.  Just ban all carcinogenics from your mouth....period.

Food for thought OzStu, and I'm sure it will be heeded x

I appreciate your replies OzStu & the positivity, I hope you are right in my situation, yes the treatment scares me & looks like torture. I know I will struggle but deep down I know I have the strength to get through it & have to anyway for my family!

I don’t have any wise words for you & I see you don’t really buy into the positive thinking but I’d like to say that taking the time to write your earlier reply to me I believe talks to the type of person you are - someone with a heart of kindness & strength!. I’m not a big positive thinker myself but I do firmly believe that good things happen to good people & I pray that this happens in your situation xxxx.

Well I will give you the low down of how my rads and chemo went over 5 years ago.  Bear in mind, that I had the rads all the way from ear lobes, down to collar bones.....all the around.  There was no evidence of any cancer apart from the right side of neck but they wanted to be sure. I would suggest if they try the same thing with you that you really think carefully about that.  If I never had all those rads on the left side back then,  I'd be able to full max dose now,  and it may have been done for nothing.

First three weeks,  walk the park. Symptoms so minor can be ignored.  After that some time in the fourth week,  a lot of food started tasting shit,  mostly sweet.  The sweeter it was, the more sour and bitter it tasted.  My skin had what looked like a very mild sunburn.  But it had started to blister.  Little tiny blisters the size a pin heads.  Inside my mouth was starting to get red and sore.  I started using pain killers and numbing mouth wash with lidocain in it that allowed me to keep eating normal food for longer.   The skin thing got bad.  It was treated by smothering it in this gel called solugel four times a day and covering it with a patch work of gauze and then a none stick dressing built out of  pieces and taped together around it all.....four times a day had to be changed.  My brother was taught how to do it all and stayed at my place.  I never felt sick in the guts,  never vomited.  But in 5th week I stopped eating because everything nearly, tasted as bad as eating dog shit.  I still drunk by mouth,  but used the peg feeding tube in my stomach and the formula for that. Then I discovered a few things that still tasted ok....scrambled eggs......I ate  lot of scrambled eggs.  Few other things I can't remember,  but mostly the feeding tube.  My skin actually improved under the gel and dressings system, even while daily radiation continued.  At the end of my seven weeks of rads,  it was just like a real bad sunburn.....no raw skinless bits and pieces like it was starting to look.  I kept up the gel and dressings for a week after rads.  Then my skin looked like bran new babies skin.  I've never grown hair below the underneath of my jaw since.....my goatee and mo grew back,  but I'm sparse and thinn in the sides.  No full beard for me anymore.

To give you an idea of how I was apart from the skin thing...well, lazy, fatigued......but,  after the last rad treatment on my last day,  I still managed to sand down filler in the walls of my entrance hall and put three coats of paint on.  Never had problems talking through the whole thing.  I did mouth stretching and neck stretching exercises and kept them going for a long time after rads were done.  I got so fanantical about it I actually increased  my flexibility of neck,  and increased my mouth opening from 50mm to 55mm.   It was good to learn self lymphatic massage and to use it before any obvious signs appeared.  If I noticed getting up in morning with fluid filling neck, I'd use a decent compression garmet while sleeping.... I'd do my lymphatic massage a few times a day, and especially before bed, and then put the compression on.  I used a near infra red light for 15 mins a day on all areas treated with rads.  I kept an eye out for thrush,  especially if my mouth was dry.  Nilstate was my friend.  No script needed in Oz for it,  don't know about where you are.  Other things were salt and bi carb soda in warm water for mouth was,  and rinse.  I didn't use chemical mouth washes and especially nothing with alcohol in it. Now for dental issues. I got any teeth that were not likely to last the rest my life pulled from the bottom.  Any teeth that needed fillings....forget it....I got crowns.  And any tooth that rots after rads.....I got it crowned. I made sure the dentist knew to put the crowns right down below the gum line.  After that, I brushed focusing on keeping the gum line clean as.  And regular dental visits for professional cleans.

I recovered completely.  Had the little battle with the skin, the lymphadema,  the dry mouth,  the thrush, etc....but in the end,  thanks to my fanatical attitude to attack all these probs I have none of them anymore.  The only side affect I retained was the loss of full beard potential.  Everything else is normal,  I look normal, feel normal, function normal in every way.  No deficits at all.  You can do it too.  Just be proactive.   Don't just leave side affects and wait for them to go away.  Do everything you can to help your body heal as much as you can.  

You are right. Even though I may be dying myself,  I have learned a lot and it's my pleasure to impart any knowledge I've gained on anybody else on how to prepare and cope and recover.  I like to help if I can.

Really appreciate the wisdom & advise OzStu. As you said above ‘may’, please hold onto that hope & the determination that shines through in your replies on how you tackled this first time. 

I see you mentioned Oz, spent probably one of the best years of my life over there some 25 years ago now. 

Hi Mack,

Whilst if it it P16+ it's a tough treatment, I would say the waiting upon diagnosis is really tough too. Try & take one day at a time & await the formal diagnosis. Once you have the facts you will feel more in control, guided by your medical team. Remember 90% of neck masses turn out to be benign. My husband was diagnosed with P16+ in his right tonsil, base of tongue & lymph nodes on 6 January - T2N1M0.  We are now 6 months down the line & I was won't sugarcoat it it has been tough. Tonsillectomy, PEG fitted, 6 weeks of chemo & RT, hospitalised for a month in total with infections, 6 weeks of total PEG dependency (get one fitted if offered - a life saver) & a month of being unable to speak (notepad & sign language - you can imagine!). But we have come through the other side. Husband is home, swallowing & taste coming on leaps & bounds, talking the hind leg off me now & icing on the cake he made out daughter's Graduation Ceremony last week - including celebratory meal in a restaurant afterwards! He had a H&N MRI & full body PET last Thursday & on 24th - 3 days time - we meet his team to be told whether the chemo & RT has worked as intended & hopefully no evidence of disease. His oncologist said whilst it's a brutal treatment we expect it to be curative. So there is light at the end of the tunnel & believe it or not, as awful as it's been we have had quite a few laughs along the way of things that happen in hospital & meeting other patients. Also the kindness of friends & neighbours has astounded us. So you are not alone. Stick on here & leave Dr Google alone. Best to you, Sarah 

Wishing you both the very best of luck for the 24th Sarah, and really hoping you get a NED.  Hugs xxx

Thanks Gill. It's certainly been a rollercoaster. I've started counselling myself this week to help me process the last 6 months as it's been so tough becoming a carer & watching my husband go through this. I've suppressed it all to remain calm & strong for my husband but can feel it all bubbling to the surface now.  Nervous too for results on the 24th  & really hoping to hear NED ..... Thank you for your message. Xx