HPV Cancer

Mal72
New Contributor

Re: HPV Cancer

Hi mate I just read your thread and was interested in how you’re going? I have similar diagnosis at this stage!
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Colt45
Occasional Contributor

Re: HPV Cancer

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.

Jolly
Occasional Contributor

Re: HPV Cancer

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. 

Mal72
New Contributor

Re: HPV Cancer

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
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Jolly
Occasional Contributor

Re: HPV Cancer

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

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CaptainAustrali
Super Contributor

Re: HPV Cancer

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.

Colt45
Occasional Contributor

Re: HPV Cancer

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

 

 

 

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Mal72
New Contributor

Re: HPV Cancer

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

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