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 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 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

Welcome Dian, sorry to hear you and your husband are going through this, but this group is really helpful and nice to talk to, they have helped me a lot.My husband finished his treatment today-7 weeks of radiotherapy and 3 chemos. Everyone on here will have experienced what you will experience and be able to give you pointers to help. Glad he's doing ok and hope he continues to do so, hope you're ok too? Look after yourself too, it's hard for you too. have a nice weekend Joy x

Hi Dian and welcome to our small but friendly group of those going through the treatment and their loved ones. Its goid to hear that you have completed week 1 and are doing well so far. My hubby was diagnosed in Dec 2015 with SCC tonsils with lymph node tumours and had 5 cycles of chemotherapy and 30 fractions of radiotherapy. He then went on to have a neck dissection and has been in remission and cancer free since July 2016.

Just to say the treatment is tough for both of you and you will need to be strong when he cant be - but there is light at the end of the tunnel and we’re here to offer any support we can. 

Keep in touch and ask any questions someine will pop by to try to help.

best wishes

Emma

xxxc

Hi Jane, I know my cancer is different to most on this thread but I wondered if someone can advise me of how they managed to take pain meds while having a feed tube.  I was diagnosed with T3 of the Epiglottis last Tuesday and am booked for surgery next Thursday so I have not really had time to get my head around it, but this is a question i forgot to ask.  Any help much appreciated.

Mo

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

Hi mo I had a nasal feeding tube fir 45 days hubby used to put meds in via a syringe there’s a seietste valve where he used to put extra water or tea in as well if u are having a peg in tummy think they do the same. Another way is s pict line in top of arm or shoulder which again pumps meds in hope this helps 

blog www.radioactiveraz.wordpres.com details my experience with tonsil csncer n affected lymph nodes 

hazel 

Thanks Hazel, yes this helps.  Might seem like a silly thing to worry about but consultant warned me this is going to be painful and as neither him or me know how much they are going to be taking, I am only worried about getting some drugs to cope with it.  Thursday just seems to be coming so fast.  xx to all

Hi, i would like to say i found your post interesting too. One thing we do have in common is the opiod patch. I was given one as a pre -emptive. It was  fentanyl( i live in Spain). Pain was expected, but either it never came or the patch kicked in before it could. I was given a warning of how to come off it gently, and i did this early, was not keeen on being on it too long. 

Now, you probabaly know this , but IF this is any use to you........my worst part, despite surgery and 33 radiotherapy fractions will all its lovely side effects, was the fentanyl withdarwal. Absolutely. I was prepared, i tapered off, but had at least 5 sleepless nights of leg twitching and more. Thought i was going nuts, so just a heads up if they can help you when the time comes take any advice you can get there. Good luck, great posting as i said.  G.

Hi, i would like to say i found your post interesting too. One thing we do have in common is the opiod patch. I was given one as a pre -emptive. It was  fentanyl( i live in Spain). Pain was expected, but either it never came or the patch kicked in before it could. I was given a warning of how to come off it gently, and i did this early, was not keeen on being on it too long. 

Now, you probabaly know this , but IF this is any use to you........my worst part, despite surgery and 33 radiotherapy fractions will all its lovely side effects, was the fentanyl withdarwal. Absolutely. I was prepared, i tapered off, but had at least 5 sleepless nights of leg twitching and more. Thought i was going nuts, so just a heads up if they can help you when the time comes take any advice you can get there. Good luck, great posting as i said.  G.