topic Re: HPV Cancer in I've just been diagnosed

HPV Cancer

Colt45 — Thu, 04 Jun 2020 01:47:55 GMT

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.

Re: HPV Cancer

iloveyoudearly7 — Thu, 04 Jun 2020 02:17:26 GMT

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??

Re: HPV Cancer

Colt45 — Thu, 04 Jun 2020 02:57:46 GMT

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..:)

Re: HPV Cancer

iloveyoudearly7 — Fri, 05 Jun 2020 17:14:24 GMT

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.

Re: HPV Cancer

CaptainAustrali — Thu, 18 Jun 2020 03:00:10 GMT

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 !

Re: HPV Cancer

Colt45 — Thu, 18 Jun 2020 12:12:25 GMT

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,

Re: HPV Cancer

CaptainAustrali — Fri, 19 Jun 2020 00:07:39 GMT

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 !

Re: HPV Cancer

Colt45 — Fri, 19 Jun 2020 01:14:04 GMT

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.

Re: HPV Cancer

Colt45 — Fri, 19 Jun 2020 01:16:01 GMT

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.

Re: HPV Cancer

CaptainAustrali — Fri, 19 Jun 2020 02:21:52 GMT

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.

Re: HPV Cancer

Mal72 — Tue, 06 Apr 2021 05:22:30 GMT

Hi mate I just read your thread and was interested in how you’re going? I have similar diagnosis at this stage!

Re: HPV Cancer

Colt45 — Tue, 06 Apr 2021 06:49:04 GMT

Hey Mal,

I have not been on since last year I can happily say though I am in full remission , after 7 weeks of Chemo and Radiation I am fully fit and back at work since last November. The oncologist states that this Cancer will highly likely not return so I am very happy yet still cautious as you just never know.

What stage are you at have you just been diagnosed.?

It was a long struggle mate but you need to stay positive and gargle salt and bi carb as it worked very well for me. Please message me and I would love to help you through this difficult time any way I can.

Re: HPV Cancer

Jolly — Tue, 06 Apr 2021 09:30:01 GMT

I had a small lump in my neck, after some tests and a biopsy it was a secondary cancer, had a PET scan and discovered primary was in my tonsils. Had robotic surgery removing my tonsils and also the lump in my neck , tonsil and margin was 100% clear, not as good with the neck margin 99.9% so had 32 rounds of radiation as a precaution. Have had a post radiation PET scan and no sign of cancer. Doing the three monthly check with Surgeon and Oncologist at the moment. Was only off work for five months, nasty operation but the radiation didn’t cause me any discomfort. Have a change in taste which was to be expected and a dry mouth due to saliva gland being nuked. Little discomfort to continue my life. Hope this is of some help, I was lucky (so far) that I got mine early. Hopefully you can have the same result, as you go through this you realise how many people are dealing with cancer, always remain positive, you’ve got this.

Re: HPV Cancer

Mal72 — Tue, 06 Apr 2021 14:38:43 GMT

Hi mate thanks very much for the reply, sounds great that you have moved through the treatment and are back at it in life.

For me I was diagnosed last week, after a biopsy that was inconclusive it was decided to take the lump out and 22 other lymph nodes! 3 came back reactive and the biopsy of the tonsil was positive! What a punch in the face! Now getting chest CT to ensure no cells have gone there and then to decide on radiotherapy or surgery only.
I’m 48 4 teenage kids (haven’t told them yet, I mean how the fu k does one tell their kids?) I head neck dissection a week ago feeling ok healing well. I’m terribly anxious but that’s par for the course I guess. Where abouts in Oz are you mate? Thanks for responding

Re: HPV Cancer

Jolly — Tue, 06 Apr 2021 21:03:21 GMT

Live in Mandurah WA. One thing I have gotten out of this whole ordeal is that no matter how bad you think your situation is there are lots of people who are much worse off, they seem to dealing with their diagnosis, gives you a better understanding or puts things into perspective. I have four children too and eight grandchildren, let them know about your situation, they are a great support for your wife. She will be the one who takes it the worst, be strong and positive for your the one they all look up to, as I said before, you’ve got this

Re: HPV Cancer

CaptainAustrali — Tue, 06 Apr 2021 23:35:27 GMT

Hey mate - life holds no guarantees - the thing is that applies whether you have cancer or not. You have to move forward with as much hope and love as you possibly can. My advice is to be protective of your mental health, and really do your best to fend off the anxiety as much as possible (easy to say, I know).

I was 44 years old at the time of diagnosis, invasive head & neck cancer, 6 months to live, 40-60% chance of curative chemoradiation. Three young sons - the youngest was 4 at the time I was diagnosed.

It's a shit show, there's no pretending. And there's no guarantee you beat it, and if you do beat it, it wants to cripple you. Cancer doesn't just want to take your life, it wants to break your heart, destroy your hope, take EVERYTHING. Don't let it.

You're still alive, and there's every chance you'll push through this, mate. I had a 50/50 shot, 6 months to live, and i'm still kicking.

But yeah, my advice isn't to set yourself up psychologically. You'll shatter at the first news of recurrence, or hiccup in the healing trajectory. My advice is to work on your ability to accept - Zen up. Again, I know it's easy to say - but in my opinion your mental health is equal parts under attack - cancer isn't just a disease of the physical health.

If you overlook that, you can wake up years after treatment, having survived, and realise you slipped into a depression. You never told your kids about the disease, your wife half-blamed you for it (or at least it felt that way), and when it was over just wanted to move on and forget it, even though you couldn't. You felt isolated and alone while sick, and that feeling stuck to you.

I think your kids probably deserve to know - but you could downplay the prognosis. Kind of vaccinate them a bit against worry & grief - give them at least a small dose of it now .. otherwise if your health did decline it would hit them like a truck later. And they'd also have to deal with the 'santa claus isnt real my parents lied to me' aspect of withholding critical info, you know ?

Sorry mate, just my two cents. I think our situations were very similar, and the thing to take heart from is that people pull through. You'll get a lot of encouragement, be told you're a warrior, that you're going to get beat it .. and when you're in the trenches, that positive stuff feels like lies. But .. the fact is .. you're still alive, and there's every possibility you'll come out the other side of this, buddy.

But don't forget there are no guarantees for any of us, even the smallest child, bathed in the light of the love of their family, newly learning how to laugh, clap, sit up, crawl ... that little infant doesn't know how long they have, it could be hours, days, weeks (or hopefully a couple o hundred years). That's something we all have to deal with.

If you allow the anxiety to take hold, it will be hard to dislodge, I promise. It's insidious, it'll dig roots. Push it back a little now, and it'll be to your benefit ten years from now when all this shit is a distant memory.

And trust me, that's possible. I used to fret about my cancer almost every waking moment.

Now I think about it maybe once every few days (in relation to myself), although I do think about it constantly (in relation to others, like yourself .. and especially kids - which motivated me to get involved with a children's cancer charity)

All the best.

Re: HPV Cancer

Colt45 — Wed, 07 Apr 2021 00:49:58 GMT

Hi Mal,

Peter my name and I am in Beechboro Perth and I am 49, 50 this year...

I had a lump in my neck for years I had a biopsy done 3 years ago and it came back inconclusive the Doctor just brushed it of as a swollen gland.3 years on and the lump started to grow bigger, back for another ultrasound this time Cancer cells were found in the lump/Lymph node. I was devastated I went home to tell my wife who was still in bed and it was 2 days before her Birthday, we both hugged each other and cried for hours.

It was something you don't expect at all we discussed about telling the kids and we decided to tell them as they are very clued and pick up on our emotions and they are only at the time 8 and 10. They took the news well and we all hugged each other and cried and me and the wife just gave them heaps of positive reassurance that daddy will be ok and we will all get through this together.

Anyhoo first step Royal Perth for Biopsy on tonsils to find the Primary, 1st result negative Doc says got to do it again this on the back of the tongue, result inconclusive. Doc not sure what's going on? Then off to Fiona Stanley Hospital for meeting with all the specialists ..now that was scary 15 of them in a small room all looking at me prodding and shoving a camera down my throat..it was not pleasant and the wife was taken back to by this. Well Mal it turns out my own immune system has fought of the primary so they rated the cancer as a "0" didn't mean much to me at the time surgery was not an option they said 7 weeks Radiation and 3 x Chemos.

Well let the journey begin I guess had no idea how I was going to get through this even my wife was worried as I don't take well to being sick and she also lost her Mother to Breast Cancer which made things worse. I was stressed about my job as I work in a Prison and the Government had just taken over and I had no leave or sick days so this was a big worry for me due to the first round of chemo and radiation hitting me hard I could not work , lucky for me the Government gave me 7 weeks leave in advance.

During the treatment Mal the Kids were amazing they understood what I was going through and supported me even at times when I was nasty , Misérable and depressed from the treatment they were so strong as too was my wife I would not have made it through without them that's for sure. I guess you have to stay positive for yourself and your family and do everything the Docs and Nurses tell you I got through pretty well in the end I was gargling salt and bi carb nearly 15 to 20 times a day for the whole time and I used these tablets that I was given by who I believe to be an angel who was going through breast cancer she brought a bunch of these tablets in one day on her final treatment and they helped with he severe dry mouth you get with the radiation.

I understand your worry Mal and I hope and pray that it has not spread anywhere else mate, I was so nervous waiting for my PET scan after the treatment I don't think anyone who has not been through this would understand the anxiousness and Dredd of waiting for the results. As anxious as you feel Mal you need to take every day one step at a time mate and even at your lowest points which will come trust me ,you need to stay strong and take all the love and support you get get from Family and friends and don't feel like a burden as I did you are not a burden you are going through a stage in your life that you need to fight for. Take all the love from your kids and let them know how your feeling and if your in pain as they will be worried for you and they will appreciate you being honest with them. Its a big thing for them and your Family as you all travel through this journey together.

And I'm not sure if you are a religious man o not but I prayed and my church prayed for me constantly and I believe God played apart in my healing. Sorry don't mean to preach its what I believe and it helped .

Please keep in touch Mal I am here to listen any time and I pray that the Cancer will leave your body and you will be strong and fight through this. Even when you feel down or feeling good drop me a line it helps so much to talk. 🙂

Cheers Peter

Re: HPV Cancer

Mal72 — Wed, 07 Apr 2021 02:16:49 GMT

What a journey mate, I’m glad you’re out the other side and living your best life now.

I appreciate the message and the content, I’ll be in contact with you for sure

many thanks

Mal