Newly diagnosed Tonsil/Lymph Nodes

HI Dani, yes I asked that very question of the radiology team - I had a PET/CT two weeks before and they said the CT Thorax would show more detail and still very much needed to be done!

Same! except mine was the left one. It is better for the pain though, having one side to chew/swallow on, you'll struggle enough as it is! The pain escalates from day 3 or 4 and got better for me around day 8 .... may be a taster for what's to come with RT! Although I've heard some people say the tonsillectomy was worse (but it's only for a few days!). Make sure you take pain relief through the night, from day 2, to get ahead of it! I set my alarm twice through the night to do this, worth waking up for.

Hx

Well we have an update today. I went into surgery on Tues 5th Jul and came out on Sat 9th. Can't say it was the best experience of my life but no major pain and just a bit of discomfort eating, I was in for 5 days as my drip kept leaking blood slightly over the limit. Anyway I came home and have had 3 weeks of recovery now. The pain wasn't too bad although eating was really difficult, after two weeks I stopped taking codeine completely and have not taken anything in a week now other than an odd Brufen. 

I am eating almost normally now, although it is difficult to swallow. Sadly there were a few side effects of the operation, I have nerve damage to the corner of my mouth which means I find talking difficult and can't eat on that side of my face without biting my lip, which is hopefully temporary. Also I have numbness in my right ankle/foot and have fallen over many times now - this has confused the docs as they went nowhere near the nerve to my foot! However it does seem to be improving slowly although it catches me out every now and then, I guess I must have trapped a nerve somehow? I also have almost total loss of feeling to the side of my face, neck and ear where the incision took place - I was told today this will be permanent.

I was also told today at my results that they could not get all the cancer out as it had spread to the tissue from the tonsil and also the lymph nodes. Obviously this has got me very worried and I am having a very intensive treatment plan of 6 weeks of radiotherapy (daily) and chemotherapy (weekly) starting in about 6 weeks time. However, it was confirmed as the tumour was HPV which I understand is very responsive to radiotherapy, so that is a small mercy I guess.

The nurse explained all the side effects of the treatment and explained they will be severe in my case and I will need a PEG tube fitted as I will be unable to eat/drink and may also have hearing damage. She also said it will take me a long time to recover.

So - a pretty gutting day and a big blow as I thought they had got it all. Anyone else been in my situation? We are going to put the house up for sale which is gutting but it is very demanding and I won't be able to look after it nor pay the bills soon enough I guess.

Siko said:

I was also told today at my results that they could not get all the cancer out as it had spread to the tissue from the tonsil and also the lymph nodes. Obviously this has got me very worried and I am having a very intensive treatment plan of 6 weeks of radiotherapy (daily) and chemotherapy (weekly) starting in about 6 weeks time. However, it was confirmed as the tumour was HPV which I understand is very responsive to radiotherapy, so that is a small mercy I guess.

The nurse explained all the side effects of the treatment and explained they will be severe in my case and I will need a PEG tube fitted as I will be unable to eat/drink and may also have hearing damage. She also said it will take me a long time to recover.

So - a pretty gutting day and a big blow as I thought they had got it all.

Hi Siko. Glad you got through all the surgery fairly well. 6 weeks of RT and add on chemo is fairly gold standard. I had six weeks but no chemo as my tumour wasn’t accessible for surgery. 
I didn’t have a PEG but a nasogastric tube when I couldn’t swallow. 
Try not to worry too much about the effects of the treatment. They are quite nasty as your mouth gets “burned” and your taste goes right out the window. 
But it’s only a few weeks and most of us recover really well. 
Take the doom and gloom prophecy of permanent damage with a pinch of salt. It’s amazing what we can achieve years down the line. 
Day by day you’ll get through 
Take care 

Oh and take your analgesia by the click when you need it. 

Hi Si. Please don’t do anythjng rash. I what is 61 when diagnosed I wasn’t a candidate for surgery at all I had seven effected lymph nodes spread to soft palate and the tumour in my tonsil.  is I managed to fly to Spain and have three weeks holiday and ride ride my bike after 8  weeks yes the treatment and not being able to eat is true for the feeding tubes do they work. I had 35radiotherapy sessions snd 2 x10 hour chemo. They have to tell us the worst possible scenarios  but take it a pinch of salt have a read of my blog and have a read of Dani’s blog before you do something drastic like putting your house up to sell.  Okay people can’t always work through treatment but I do know people have gone back to building sites working after three months.Yes we are all different how we respond . 

Hazel 

Hi. I had exactly the same experience. Cancer in tonsil and lymph node in neck. Had surgery and then needed the same treatment of daily radio for 6 weeks and weekly chemo as it had spread to throat tissue. Went for follow up appt after surgery thinking that would be it but was presented with a letter about an oncology appt on my arrival so quickly discovered I was wishful thinking! I’m 3 months post treatment now and beginning to resume daily life. Suffer with a few side effects but feeling pretty good. 
Clare. 

Hi Si

Thays a bit rough after a hopeful prognosis.  I did not go past surgery but the radio and chemo should deal with the spread.  Other will help you prepare for the follow-up treatment as I've no experience.  It may be tough but they will get you to be cured - almost all of us have that outcome!  I am glad that they were honest with you as I fell many of us have the effects of treatment minimised just to get us to take it - surgery or radio!

What I can say is that nerve damage does very slowly heal itself.  I found that after my operations it was around 18 months before I suddenly realised that I could do things I previously could not.  Slow and almost imperceptible repair is what I would describe it as.  There will be some bits that don't come back to what was normal before surgery.  In my case these effects are more amusing than life changing - I can scratch my neck and it feels like I am touching the top of my ear.  My chest wall feels like it is sunburnt if it is touched, but I have learned to live with that.  I also get muscle cramp where the dissection is, but again I can work with that.  So hold out hope that things will get better - in fact my consultant told me that my shoulder would never improve, my physio thought that was nonsense and just today I moved nearly 1 ton of ballast and cement...

As has already been said don't make rash decisions.  You sound a very sensible, and plan things out so I am sure your decisions are right for you.  I told people during my treatment that I would not make any decisions outside of that relating to my treatment as I did not trust my brain to be in the right place.  Take your time to decide what's right.

Thanks for all the feedback folks, that helped immensely. We have decided not to sell the house just yet but are going to get it ready for sale if we need to, I should get my full salary paid for the next 5-6 months and then I get 50% for a further 6 months so we can probably survive a year or so even if I am in full treatment.

We are just awaiting on a small critical illness policy which should mean we can get the house painted and tarted up rather than me having to do it all myself as I have done to date due to a lack of funds! I am still very worried about the spread, but find the advice on here priceless, thank you one and all. I think the initial prognosis was so positive and easily treatable that it maybe lulled me into a false sense of security - quick op, bit of discomfort, blast of radio and back to work....as opposed to what I've just been told :( I assume what they thought was early stage is actually much later given it has spread out of the tumours. I have a couple of friends who had sizable tumours but as they were contained the surgery was successful and neither needed any radio/chemo - I was hoping to be in their boat but obviously not. Thanks again Si

Hi Si

Yep, I was hopeful a tonsillectomy might sort it, but margins weren't clear enough. I had the 6 weeks chemo-radio with 6 full days of chemo. Knocked me right out for a few weeks, but have just completed a full year back at work. Still have some slight adjustments to help not overstrain my voice & to accommodate eating & oral hygiene and to give me a bit of slack when the fatigue catches me (but that's mostly another problem). I had a similar sick pay set up, my boss didn't start the 6 months count on the full back until RT started (I worked from home for 3 weeks between op & treatment), might be worth looking into if you are up to it (I appreciate you had more surgery). Take the PEG, the idea horrified me to start with, but it was a complete lifesaver, I went a few weeks after treatment unable to swallow. I struggled a bit earlier this year and my husband started de-cluttering the house to sell it & move us to a bungalow (I developed rheumatoid arthritis alongside the cancer). Initially I was fully up for it, then decided to talk to rheumatologist about better treatment, not 50 yet so psychologically not ready to downsize and retire. Sorting through the house might be a welcome distraction at times, but keep your options open. Lots of us on here have come through & are doing well post treatment. Bunker down, take the meds and scream on here when you need to. Best wishes, Gill