Think it’s good that you are doing this will read your progress thank you

Hello everybody... all very familiar names to me now.

i am aware I’m posting on the radiotherapy thread despiteI aving opted to try single modality treatment with two major surgeries in preference to a course of radiotherapy. I would be due to enter my last week of radiotherapy had I made a different choice or my first week had I had positive margins or nodes after either my neck dissection or my oropharyngectomy. Anyone being offered and facing the same choice dilemma may read ahead as I did to this and it’s useful to understand where the criteria     boundaries lie and to compare both the short and long term effects.

So I’m doing well. My results were all good and for now this is the limit of my treatment. No follow up scans just the camera and my own diligence. My first operation was to remove an enlarged unhealthy tonsil which by nature of its size involved a significant area of stripped tissue in my throat. Very painful but no NG tube which was a godsend although cue instant weight loss and two weeks of serious doscomfort followed by two weeks of jaw, ear, tongue and facial pain.

then selective neck dissection to remove all nodes from groups 1-4 including a salivary gland beneath the jaw and clipping off some blood vessels to limit bleeding during the next round. This runs the risk of nerve damage to he lip and shoulder both of which I have had although the lip has just recovered as will the shoulder eventually since the surgeon was able to identify these structures and preserve them - they are just bruised/stretched. Whilst I was worried about the risks the recovery was actually easier being on the outside of my body. Just working on regaining neck mobility and moisturising the 22cm scar on my throat. Quite a bit of hyper sensitivity collarbone, face and neck but perfectly acceptable in the grand scheme of things. I had my good tonsil taken out at the same time which was much easier to contend with as it was  small and left not too big a ‘bed’ of raw area.

My last operation removed everything the cancerous tonsil abutted. This included a small section of tongue base (invisible to me, not too uncomfortable, at least not as sore as the tongue clamp and stitch through the middle used to tug my tongue around with), section of the constructor muscle which creates a cavernous space where food gets stuck and interrupts the swallow necessitating rinsing down of food hopefully only until the strength of the other muscle picks up to compensate, the half of soft pallet on that side giving a higher arch to the roof of ones mouth which communicates with the nasal space hence drinks flood my nose until it scars up pulling the remaining tissue a little across the midline and until I can tip my head back to assist drainage down my throat (cut muscles and tightness are currently limiting this but by two weeks I was in more control).

the pain of this last operation had me climbing the walls and opioids were the only way to go, eventually a slow release patch sorted me out. I had and continue to have to a lesser extent the sloughing off of throat lining and two hourly up in the night to shift this and thickened stringy saliva, take pain killers, rinse, sit up etc. The NG tube knocking against sensitive tissue was another insult! Pushing for pain relief on the ward was the biggest hurdle as by the time I requested it I was too sore to swallow anything. 

All in all three lots of two weeks of quite henious stuff interspersed with a week or two of relative normality and manageable rest. Then the slower, longer process of revitalising, fitting round limitations of food and drink (fizzy  an absolute no no as foams down ones nose) and rehabilitation. I made the decision for surgery over radiotherapy because whilst the acute discomfort sounded similar in duration and nature the salivary glands (2 main ones arc the rear and one in the base of the mouth) were in the main preserved and the ongoing food sensitivities relatively short lived (8 weeks from end of treatment apparently). Also it keeps radiotherapy as an option for the future as well as further surgery. The outward signs are more visible but neck scars tend to fade down well and not many people look inside my mouth. So far the signs are all good for normal speech although I have developed a quiet snore) and recovery of eating and drinking and shoulder function should ultimately be good within a relative short time scale (a few months). I also think the fatigue level is not a secret hard hitting as radiotherapy although some of you ahead of neck niece steve fitter than I was prior to diagnosis.

My final classification is N1/2 (2cm), N0, M0

Im with you all on the recovery and hope I don’t come across as a fraudster on this thread. It’s my sliding doors moment and interesting to compare the two regimens if they’ve are being offered on occasion. I had a different cancer in my 20s and had my share of chemo and radiotherapy then. I’m like a cat with nine lives!

the recovery phase is a luxury in my view. It means we are planning a future that we were at risk of not having. Time does pass and somehow we get through it with advice and guidance tips on here providing a lot of skills in managing some of the stuff we might otherwise have been forced to accept or endure or thought nothing could be done about.

roll on flat beer as my first indulgence and symbol of rejoining normality. I’m planning back to work beginning of July (I work on itu so plenty of good people around me).

i recommend decent pillow covers for all the dribbling at night... I’ve been like a slobbering dog as my body soon learned not to swallow involuntarily.

Please feel free to ask anything if I can help.

Love and positive thoughts to you all. Thank you force being on this site. I’ve read far more than I’ve posted but my time may come to help someone else.

Jane x

Hi Janeagain

thsnknyiu very much for your alternative route being posted like Ian says you aren’t s fraudster at all especially says you’ve already done  the chemo radiation route in your 20 s an alternative route was the way to go. I originally was offered a possible route similar to yours but at my pet ct scan just before final decision the cellschad migrated to a lymph node be my spine at the top only s baby cell but nevertheless operating was not an option hence my chosen route. 

Yours makes for interesting reading and wish you well on the road to recovery baby steps all the way

take care keep in touch

hazel xx 

Hi Dian. Welcome to our small and exclusive club that no one really wants to be in. i remember eeek one well the best way I could describe the feeling was like bees buzzing st the back of my throat.

Therr us light at the end of the  tunnel just look on here to see it can be rocky but I am s wimp and positive mental attitude got me there along with a few tests and lots of laughs especially with my new found cancer buddies v

dont feel alone pop by when ever one of us will get back to you with some words of wisdom. Just remember we are all diffetrntvwhst one of us gets doesn’t mean your hubby will get. What’s is numbers do you know I was T2N2NM0 h p v 16 + 

krtp in touch 

hazel x

Hi Diann

Welcome to the thread and glad he is doing well.
Plenty of info here and on our blogs to give you some insight on what potentially to expect and when.

As Hazel says, plenty helpful folk around here to help and support no matter the issue.

Onwards & Upwards
Ian

Hi Jane

I don't know if you are medically trained but you have quite a grasp on the subject and pehaps able to question or articulate better with the medical team around not only the diagnosis but the treatment plan.
I can only speak for myself but I wasnt expecting the disgnosis when I did so I had no real terms of reference and just kinda accepted all that I was told on the basis, they are the experts.
I had no knowledge of the subject and to be perfectly honest, I cant really expect to be an expert ,even now, just because I was diagnosed, treated and have all the side effects that come with recovery.
One of the things with hindsight was the lack of understanding, particulairly when it came to side effects. I have had particular issues with appetite and fatigue and it took me to go back to my team around 6 weeks or so ago to get some resolution for appetite. Fatigue is still ongoing but getting a little better. Again, while the advice given re appetite helped it was only when I went back after such weight loss that they explained a little more re good calories/ wasted calories and body looking for energy etc. Again I had to and still do follow all their advice as I have no real reason not to, nor am I in any positon to question much and this is from treatment stopping last Novemeber.
Lets face it, while we might be a little more informed after treatment and recovery we are in the main prertty much all amateurs at this and we can only really advise and support others based on our own experiences.As far as I know, none are medically qualified in this area of expertise. Having this thread has helped as many have come together and its been great to pick up on little tips that otherwise we might not have known and in the main no one person has all the answers for all the issues so thats why I feel this thread community has helped one another on a collective basis.

The fact that you have expieriened nothing unexpected apart from pain management is great, but I still feel that it was a brave decision to make yourself . Again if I'm honest I would do the same again and let the professional medical staff decide what was best for me and rely on their expetise and treatment plan. I cant say that I have had nothing that was unexpected as I have had many, particularily with side effects and had to kind of wing ot between suffering, using this thread and intermitant appointments with my medical team.
Pain management with this can be subjective as some try and do without, some try minimal, some in the middle and some at the end of scale with quite high doses of various pain management medications, mainly morphine in the  main.
I woudnt say I was in much pain as as soon as it crept in as an issue my medical team were right onto to it and upped dosage accordingly so perhaps best described as discomfort rather than severve pain. In some funny way my pain was not managed so well when I had my tonsil out and recovry from that and same with teeth extraction, That was a major ouch !! and really was in some pain with that.
I agree with you totally whe you say when you look back and wonder how we managed but I guess for me I tried to keep a positive attitude and kinda accepted whatever was thrown my way. On the basis that I had no option and they were trying to save my life so mentally I went into whatever it takes mode. We are all different as we keep saying on here so whatever works for the individual.

Really interesting reading your posts and quite an insight. This only adds t o the information held on here and can only be a good thing as usually somebody fits into to someone else situation and mirroring timelines with side effects so thank you so much for your input and contribution.

One of the best pots I have seen and I do hope you keep posting with updates and again please jump in if you feel you can offer further help in the thread in anyway.

Onwards & Upwards
Ian

It’s interesting that you say hpv is aggressive Jane, I wasn’t told that but suspected it because suddenly one day I could feel something at the back of my throat when swallowing but the previous day there was nothing which made me think the tumour was growing fast, it’s true that you learn more on here than from the docs but suppose we are on a continuous conveyor belt of patients and they can only tell us so much in a short session. Plus I got the feeling I was being told just enough to keep me satisfied.

Dave

Hi Dave

My understanding is that HPV cancer grows fast but in a very predictable fashion. As radiotherapy targets rapidly dividing cells this level of activity is good for treatment and the patterns of spread are predictable so regions it is likely to migrate to can be included. It seems to spread like a bramble or strawberry plant by creeping across the tissues or satelliting other spots nearby or via the lymphatic system where is is captured in the closest nodes.

Ian - I have a tenuous medical background having worked as a physio for many years and now on Intensive care but doing admin. It just means I find I can be exposed to terminology/biolody/procedures and have a vague ability to understand them.

It was the same for me. One day there was nothing and the next there was a sizeable lump rubbing on my throat which I watched change seemingly before my very eyes.

I am paying privately to get my son vaccinated (my daughter was included in the National programme). It is not currently available on the NHS until this autumn and then only for 13 year old males with no backdating.... the feeling is that if erradicated from girls then it will fizzle out in boys. The exception apparently is for men who have sex with men in which case they can obtain immunisation too. Of course as europe is not united in its policies this does not work for boys who meet a spanish girl on their holidays (Spain has not vaccinated all girls) and sleep with her so Im taking no chances.

x

Hi Dian . Welcome . You are just starting out this journey while my husband has just finished . You will get plenty of help here from all the lovely people . I hope it all goes well for your partner . X x x 

Hi Jane

I think this was previously mentioned by Lemonice on here but from what you are saying, there seems to be some correlation with throat cancer and sex, or at least potentially a factor.
Not trying to be graphic over a sexual discussion but sex is quite a popular phenomenon by both male and female and has been since the dark ages, so I'm not understanding the correlation and if so, what are there not far more casesof throat cancer.. Or am i misreading and there is no correlation? and why would it be eradicated from girls if boys treated.
I have also not seen much publicity around any vacccinne being available for all 13 year old males.

Again, all interesting stuff and some of the science around this is really quite fascinating.

ian

Hi Ian

The HPV virus in throat cancer (strains 16 and 18 as I understand it) is the same virus that causes cervical cancer in women. The vaccine was designed to eradicate this but with the increasing prevalence of throat cancer in younger people it should also now play a part in eliminating our cancers. It is transmitted by sexual activity and the vast majority of the population carries it for the simple reason you have pointed out. It only converts to cancer in a few who’s immune system does not fully deal with it. The initial thinking was to treat the girls and then the boys have no one to catch it from which is rather an old fashioned approach but termed the ‘herd’ mentality. Ideally therefore as a society we catch the youngsters before they become sexually active, although it can be transmitted at 2nd and third base too I believe!

as I understand it it does not have to be oral sex for transmission as it floats around in the blood stream. Yes I raised this earlier to which lemonice responded with some useful stuff. But there is a whole glut of adults out there who will unfortunately add to the statistics before this all comes into effect. And we thought not smoking or drinking excessively was ‘clean living’!

useful link for parents

assets.publishing.service.gov.uk/.../Extending_HPV_Vaccination.pdf

www.nhs.uk/.../

www.jostrust.org.uk/.../who-can-have-the-hpv-vaccine

x

Hi Jane

thanks again for enlightenment and links.

This has puzzled me slighty as in very geralistic terms, I had always understood to be predominatly male and from ages 50+ at most risk and cases diagnosed..
I dont really research google as so much mis information

I would never have throught of the correlation nor would I thought preventaive measures at such an early age because generally an "older" male over 50 would yield the highest cases. So on basis that it can be quite an agressive cancer does this mean it lies dormant for years then once acitaved mode for want of a better expression, it then grows really fast.
Why would we not see more prevelance of cases in the younger generation given the correlation with sex?

sorry for all the q's...just really interesting

ian

Hi Jane

thanks again for enlightenment and links.

This has puzzled me slighty as in very geralistic terms, I had always understood to be predominatly male and from ages 50+ at most risk and cases diagnosed..
I dont really research google as so much mis information

I would never have throught of the correlation nor would I thought preventaive measures at such an early age because generally an "older" male over 50 would yield the highest cases. So on basis that it can be quite an agressive cancer does this mean it lies dormant for years then once acitaved mode for want of a better expression, it then grows really fast.
Why would we not see more prevelance of cases in the younger generation given the correlation with sex?

sorry for all the q's...just really interesting

ian

Hi ian I’ve looked into this will send u private message butbthe h or can live dormant in yiu upmtom40 years most people get rid of it inside 2 

h xx

Ian I was told that as we get older our bodies don’t work as well and as we make new cells the hpv causes some cells to divide and mutate, a lot of cancers come later in life so that in itself isn’t unusual.

80% of the population carry hpv but in most cases that isn’t a problem and there are no symptoms, 

Dave