HPV Cancer

[Colt45]

Hello all,

I have recently been diagnosed with HPV I believe at this point has started in my Linguinial Tonsil I have a enlarged Lymph node on the left side of my neck. I have had a PET Scan and my second CT scan yesterday and I am awaiting the results from that. I am having surgery next Thursday to biopsy my tonsil and not to sure where to from there. Has anyone else been through this cancer and have any advise or comments. It would be appreciated hugely.I am 49 and have a wife and 2 young children I am praying it has not spread.

[iloveyoudearly7]

Welcome to our forums!

If you don't mind me asking, how are you going now?? Every type of situation is different to deal with.... usually from what I've heard this type of surgery goes quite well and even after treatment too. How did your successful surgery go??

[Colt45]

Hey,

I am yet to have surgery I believe they are only taking Biopsy next Thursday when I go in, my biggest concern is the PET scan outcome which takes don't know how long to get results for...I am usually a very patient person yet this has me being very impatient LOL...How are you and thankyou for replying to me..:)

[iloveyoudearly7]

Hi!

Actually my worry is about you of late...sorry.

I understand the situation with a loved one z you'll be fine, trust me.

[CaptainAustrali]

Hi Mate

First up, read on P16 and HPV positive cancers.  It increases the survival rate over general cancer by about 20%.  

Mine was tonsil also and found very late.  No biopsy or surgery, detected by physical exam, pathology test and ultimately a PET scan to verify and size it.  Treated with chemoradiation.

I was aged 47 at the time, three young sons - the youngest was 3 or 4 at the time.  They suggested at the staging of my disease, if treatment was unsuccesful, I had 6 months to live.  This was more than 3 years ago, hopefully still cancer free.

Your life has changed, it will never go back to what it was.  BUT - you have a good chance at survival, the big and important question is:  has the cancer metastasized elsewhere in my body ?

If it has, don't freak out - if it's advanced only to your local lymph nodes, they can be treated surgically and with the radiation.  Radiation is the main defense for your type of cancer, I think the chemo just increases your survival rates by like 2% or something .. ask the doctors, don't rely on my words - but I'd suggest, with kids - take anything and everything that will help you survive (note a nagging spouse increases your survival rate by 1-2% as well !)

Even if it's late stage and advanced, the raw survival chance might be 40% or something, but +20% because of the HPV .. and that's the kind of worst case.  If you're caught early, local only, your natural survival rate might be closer to 80%, and the +20% tips you over into pretty strong numbers.

Sorry - I'm all about data rational choices, and I find the math comforting, especially with my kid's futures impacted so heavily.

You can pull through, buddy - materially I had the same situation, and although that's no guarantee, when I was in your place, I felt untethered, afraid - but after a long and tricky struggle, I pulled through.

Mate, if it's useful to you, I wrote a lot of my experience in two threads, one of them you'll find here:

I've just been diagnosed >  Important Advice : This isn't the end

The other is in:

Treatment and Side Effects > can't remember exactly what the thread is called, but it's about PEG tubes, mucositis, radiation burns, all the kind of things you can expect with your cancer profile are narrated there, by myself and a bunch of other folks who have gone through it.

My main advice:  stay psychologically strong, don't be deterred - do everything you can to survive this, and try and be happy and make your family happy for as long as you have left, whether it's 2 years, 20 or 200.  Whether you have cancer or not, I think that's important advice .. don't let fear and uncertainty rob you of the love and joy that's available to you today.

All the best !

[Colt45]

Hello Captain,

First of all thankyou so much for your inspiring reply it was awesome and encouraging to read. I have had my PET scan results and it has not spread, I had Biopsy done at RPH last Thursday and I have only found out tonight that the biopsy results have come back inconclusive and I now have to go through the surgery again this Thursday. They say the Cancer ( Tumor ) is in the tonsil yet they are not sure exactly where.

I was informed that I was going to Fiona Stanley this coming Monday to get results and plan for treatment so that has now been changed obviously.

I am in a good place as far as knowing and coming to terms with having cancer now I just want treatment to start so I can rid this out of my body.

They state that they don't want to operate and remove it ,yet it was mentioned to my wife by the specialist that it may now be an option so really not sure which way they are going to go.

All I can do is be strong and I am lucky to have a loving and supportive Family to help me through this.

One again mate I thank you for you reply it is very helpful and I will keep you updated if its ok with you.

Cheers and I am very happy you have got through and beaten your Cancer,

[CaptainAustrali]

Hey Hey

The fact that it's hard to find could be seen as both plus and minus - but when I found out mine had not metastasized beyond local lymph nodes, I did a little dance.

Mine was big, impossible not to find, and advanced to local lymph nodes - basically caught at the last possible moment.  And I beat it.  

It sounds like you're in the fight much earlier - and mate, the earlier you attack this kind of cancer, the more significantly better is your prognosis.  Late game I was a bit of a coin toss (with the benefit of that +20%), you may be more in the neighbourhood of 80% as a starting point .. your +20 can push you up to more of a "numbers are dramatically in your favour, there's just a 1 chance in 200 that the cancer wins"

Also .. second thing, kinda morbid gallows humour I guess - BUT - bear in mind that if you have a 1 in 100 chance of losing the fight .. when you're next in the clinic and glance around, you'll see that many of your compatriots are old, infirm, falling to bits.  So the likelihood that you're the 1 probably is narrower still given your life stage advantages.

Take heart and be strong.  Good luck.

Keep updating by all means - if you find yourself needing advice, I (and many others who have been through this) are ready to help.  Trust your doctors but double-check, I reckon !

My last little bit of advice would be to use the cancer as a reminder that life is finite.  None of us, not a single one, get out of the Game of Life with a winning ticket, we all have to go someday.  The back-handed gift of cancer can be that it is a constant reminder of this, and if you take that reminder with an unhealthy outlook it can lead to apathy and depression .. but if you are strong of heart, it can nudge you into injecting yourself more fully into the joys in your life.  Love your kids, cuddle them, parent them, enjoy it even when it's one of those for-f's-sake-eat-your-effing-broccoli moments.

If it's confined to your tonsil and a surgical solution is available, don't be freaked out if they want to do some spot radiation too (as a precaution).  Just read up on the chemo if they suggest that, as it's where some of the longer term side effects come from.

Choo Choo !  Jump on the Beat-Cancer train !

[Colt45]

Thanks Captain,
I will let you know how I go when I find out what's happening you have helped me heaps already.

Colt 45 out for now but not for good.

[Colt45]

Oh yeah the Cancer cells were picked up in the Lymph node currently enlarged on the left side of the neck 2 small black dots appeared on the PET scan and a dark spot in the throat.

[CaptainAustrali]

OK buddy, don't let the "local involvement" freak you out - if it's been shown by the PET scan that it hasn't travelled any where distant, the treatment for tonsil cancer + lymph node is basically the same .. well, actually I can't speak for the surgical approach, I understand in addition to yanking out the tonsils or whatever, they'd have to perform a thing called a "neck dissection"

Surgery wasn't viable for me, cancer was too big and advanced, I'd just trust the doctors - but I had chemoradiation and it took care of the source and the lymph nodes.  It means a bit of extra radiation to the neck, and you'll deal with possible burns & dermatitis, but it's just a few weeks in hell, after which the side effects slowly get better.  You just need to distract yourself, keep some daily fun or amusement in your life, and pull through the treatment phase.

Anyway, your doctors are a much better source of information than me, heh - but take heart that you dodged a bullet if it hasn't spread elsewhere, don't let 'local lymph node involvement' discourage you too much - tackle the bastardly thing, and stay strong, brave and loving for as long as you can, mate.