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

Not a fraudster at all and most welcome.
 

Really good post from yourself and really helpful insight into your journey and very imformative.
I first started this thread to try and help others as I was gloing along my journey and since then so many have joined and contributed, supported and really helped one another.

The better the understanding from a patients point of view the better and we all have an obvious interest in this subject.
Lemonice posted quite an iterestiing couple of posts and again I found this detailed post of yours adding another dimension and real life journey with your diagnosis and treatment.

What I found quite interesting was the fact that you had a choice in your treatment whereas I was just told what was going to happen. Still do, but that said, I have total faith in my consultant and my medical support team have been magnificent.

I'll post a link below to my blog that I kept as well, warts and all and it's quite up to date should you wish you have a look at.
Please keep posting as you see fit and a very welcomed addition to the widde range of experieces/support/tips and well as some positive light hearted humour along the way occasionally on here. There are also quite a few good news stories after treatment,mine included and we hope that inspires others wherever they are on their journey.

radiotherapythroat.home.blog

Onwards & Upwards

Ian

Hi All,

My partner is at the end of week 1 of 6 of radiotherapy. He is doing well. He says his throat is a bit more soreness than there was and is still able to eat and drink.

From

Dian

Thank you Ian

i ought to explain why I was given a choice.... I know it’s rare to have a ball back on ones own court but this is what happened....

my pre op scans all showed no evidence of disease spread outside of the tonsil although my biopsy had a margin of just 1mm from the boundary edge. This is not enough to feel comfortable that there are not a few escaped cells invisible to the naked scanners eye. Having said that there is a natural wall tumor cells would have to jump to escape the enclosed tonsil structure and make it into the soft pallet, tongue or muscle so this stage slows it a little. My node biopsy was also clear but I was told with the aggressive nature of HPV one couldn’t be certain without treating or extracting and putting under the scrutiny of the microscope. But there was a possibility I would have healthy tissue removed or irradiated, the former being the only way I would ever know for certain which side of the spread fence I was on. Statistically for T1 and T2 tumours with less than 2 nodes involved but contained (Unruptured) outcomes for survival were equal. So events have to stack up in that way. 

I asked about simply watching and waiting with scans but was told it was too risky. I didn’t have laser surgery as my mouth opened nice and wide and everything was accessible without high magnification and fine tools. My mouth doesn’t open so wide now but I’m working on it!

the radiographer and surgeon both pitched to me in a very tame manner.... but I had already read the blogs here.

At this stage I still feel for me it was the right decision as nothing unexpected aside from the level of pain but this is a delicate area to deal with whilst maintaining function. Pain relief is key.... much like childbirth. I would go in begging for an opioid patch next time. They were very good in recovery with paint relief... I had to check the op had gone ahead in my delerious state. But the NG tube siting didn’t get reported until the next day so that was defunct overnight (when it did work it feels like icy water is trickling down it) and it was missed that i could have anything other than paracetamol without tube access and the medical officer on call was not requested. All got sorted on the ward round but a most distressing, painful and long few hours ensued. 

I think many of us look back and question how we managed to do this but there are few choices in the matter and we are on a conveyor belt. I just happened to meet the criteria for one.

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 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