Hi from over the pond. I'm near London in the UK and working my way through treatment for tonsil cancer.

Diagnosis July 25 after biopsies the week before. PET/MRI followed. Then neck dissection and bilateral tonsillectomy the last week of Aug. Nothing new on PET or MRI other then the neck node and tonsil.
Some delay in me presenting with general practitioner as I had flue same time lump started and nodes on both sides were up but left one didn't go down so six to eight weeks behind when I would have been into the doctor.

The node was quite well developed, but the tonsil where the primary has been confirmed hadn't changed in size, it was a little whiter. It did plump up before surgery a month later.

Surgery was left side neck dissection, modified radical so muscle and vessels left in place but all the nodes from top of head to upper chest gone. All clean apart form the one that had exhibited. Same node that serves the tonsils. Full tonsillectomy showed on left side tonsil infected and confirmed it was primary. Fortunately, no paralysis of the shoulder and out of hospital 36 hours after getting of the table.

Post surgery investigation showed no spread from tonsil although characterised as T2 as it was around 20mm in one direction but no capsular spread. Lots biopsies inside mouth, around tongue showed negative which was good news. The single lymph node had got quite big, just over 3cm and had breached the capsule but no sign from tests of tissue in region that anything had spread. Got characterised N2a. No distant spread got me an M0 - T2N2aMo

I was told initially 80% then 60% prognosis but then told post surgery that there is no detectable evidence of disease but there will almost certainly be remaining cells 'microscopic disease' that either are not turning nasty or there is nothing that can be detected so a mopping up process of 6 weeks radio, 5 days a week, with a Cisplatin as a sensitizer on the Monday of each week. So in all 30 rad and 6 chemo sessions concurrently.

I am with the NHS and no complaints re response times and speed things have happened but as they have limited time with patients I do feel a lot of questions need answering.

I am a bit worried as we have gone from a 80% expected prognosis to a lower one which I guess is as a result of the single node size and breach of capsule. I think my T string equals grade 4a which I don't read good things about prognosis wise. Then I am told it is all cut out and we are treating for a cure so expectations can be more positive, especially as no distant spread or evidence of any active disease post operation.

For extra fun, three weeks after neck dissection and tonsillectomy I had all four wisdom teeth out under general as part of prep for radio.

Where I feel information is vague is risk factors of distant spread at this stage or local reoccurrence.

Chemo/radio starts in two weeks (second week of Oct).

I am a social drinker, not excessive but above the 20 units recommended and a life long non smoker. 46 and reasonably fit. Likely an HPV type I am told. I have given up drinking as in future silly to tempt fait.

Anyone ben in a similar position? Would really like to hear your experiences.

I sure hope they will test for HPV. Won't change the Tx but will affect the expected survival percentages.

Welcome to OCF! Glad you have found our site to help you get thru the next phase of treatments. You are among friends here, its like a big extended family with members from around the world.

There are many things to prepare for prior to beginning treatments. Here are just a few things to do to get ready.....

Right now you need to focus on eating everything you like and not worry about gaining weight as you probably will lose some during treatments. I know your mouth is probably sore from the teeth being removed but push yourself. Get a hearing test, full bloodwork including thyroid and testosterone. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays).

Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is your intake. Every single day you need a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If you skimp one day and think its ok you will make it up the next, you are wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push extra water to flush the poison out of your kidneys.

When treatments begin, pay very close attention to your hearing. If you notice even the slightest change inform your doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent.

Next thing to do to get ready is to eat. If you are slim, try your best to gain a few pounds. Oral cancer and its treatments can alter your sense of taste and ability to swallow. For most patients its temporary but it could be a few months before you can eat like you do currently, so eat now. You dont want to have cravings so enjoy everything now.

Get flouride trays made and begin using them. This can take weeks so do not delay.

Get your hearing checked and a full blood count including thyroid levels.

I hope I havent overloaded you.

Best wishes!!!

Hi John, and welcome -- I'm glad you found us. Christine and David are offering great advice.

I know it's hard, but please try not to focus too much on statistics. They're all made out of individual cases and there's no way of knowing where you as an individual will fall on the continuum.

Like you, I had surgery and am now in chemoradiation. The course of treatment we are on is very typical and the best preventive against local and distant recurrence.

I've gotten tremendous support and help from the folks on this site, and you will too.

M

hello John, You and I have about the same cancer, same primary same side. but mine was caught late in the game and got tagged stage IV. like mentioned above we all respond to treatment differently. With my stage they started with just Radiation and Erbitux in place of citplatsin as I am HIV+ and my blood could not take the standard treatment. You have found the best place for support and experience. Not from me but I see you have made contact with ChristineB. she has a lot of info that I have found to be invaluable. So welcome. and post often for best results. Shawn U

Ditto to all of the above. I'm not one who knows anything about the medical side, but can offer support as cheerleader for you to get through this. You won't be alone, we are a big supportive family and here for you.

Hi John, and welcome!

I am a newbie here myself and have almost the same cancer as you do (mine is thought to be T2N1), on the same side, but definitely HPV+. I will have my wisdom teeth out in two days and start RAD in 2-3 weeks, so everything very similar to your situation.

I can not offer any advice as I am still learning about everything involved but can certainly offer support as I am in a very similar boat.

I hope you get tested for HPV fairly soon. From what I understand,SCCs positive for HPV have better prognosis and respond to treatment better as well.

Best of luck with everything!

Hi Ambra
Sounds a very similar story. My node had got to around 34mm so quite big with a breach of the capsule but when everything was out I got told no malignant spread and next step is to kill of any cells that are left so technically
I am clear but of course some cells will be lurking around. The tonsil tumour has progressed 2mm tail developing but no sign of spread outside capsule so rest of mouth is clear.

Wisdom teeth wasn't much fun, in fact knocked me harder than the combined modified neck dissection and tonsillectomy (both of them). It was three weeks after the neck dissection so maybe I hadn't quite got over that.

Tip, get a baby toothbrush as small lone is easy to clean with and not disturb the sockets that are healing.

I have friends in Fl, just found out one of them has throat and colon cancer.. radio working on his colon at the moment. Another friend over here in UK just had her two year old diagnosed with bone cancer.

Once we open up it is shocking how many people have either suffered from cancer or have a family member who has. In a way it is encouraging as so many see it through to good outcomes and it isn't the death sentence the disease once was.

I am doing the paranoid about any lump or bump at the moment and probably made myself sore poking around my jaw. Desperate to get the rads on as it feels like progress rather than waiting. Oct 14th is the start so will keep you posted.

All the best,

John

HI Nancy
Thank you so much for encouragement. I'm in a good place post surgery with tests showing that mouth and tongue are clear and tonsil hadn't breached but the lymph had.. Post up I am clear at the moment but high likelihood cells that haven't started to go bad so need an aggressive clean up. Frightening time as noticed puffy pea sized gland type thing under jaw but also this is where I was bruised to hell during wisdom so probably a bit paranoid. Was scared that when matrixed the T staging comes out at a 4a - 4 is scary. Was told that now all cut out to relax and not panic but just focus on next stage which is to stop any bad cells that haven't kicked off yet.
Thank you so much for your words.

John

Hey Shawn
Good not to be alone! How did they get to a stage 4 for you..I was told I wasn't an advanced stage and sometimes the T staging for head and neck can put you in a four when in fact a prognosis is much more like a 1-3 stage. My T2 was due to the tonsil being 20mm in one direction but was still contained in capsule with no spread (lot of biopsies at time of operation around mouth and tongue) - consultant shrugged and said although it had started to grow quick, it hardly showed any growth a month earlier but was just pale, that being contained still was to him as good as a stage 1 as far as he was concerned. The node was quite big by comparison, 4mm and had just breached but tissue all around tested clear. That got me an N2a, I guess 2 for size and a for the breach. I was shocked when al taken together I fell to a stage IVa.
I have had really good care, but our NHS despite being very god has lots of patients so not always had long enough to talk t consultants.
DO let me know how your journey goes. Im in on Oct 14th for six weeks chemo radiotherapy.

All the best


John