Hi everyone, I do hope you are all well and would love to hear from all you guys who wrote on this thread if possible.

My Story is this. On 13th February 2019 I had my tonsils removed. I also had a growth in my throat/base of tongue removed as well as the abnormal channel thing in my mouth also removed.

On 27th February 2019 I was told that I have Stage 2 Squamous cell carcinoma of the right tonsil.

I had an MRI scan & a CT this week again, last time was in November 2018.

On 13th March I was told that I will need Chemoradiotherapy for carcinoma of the right tonsil for 5-6 weeks. So a combined treatment.

On the 14 March I had to have an ultrasound even though I had one 2 weeks ago. However this time I also had to have a FNA. After the scan the radiologist told me the result was in the middle or in other words No. 2 between 1-3. Hopefully I’ll find out more on Monday.

From what I’ve read here others seem to have had radiotherapy only so I’m wondering if it’s different where you guys are? I’m in the UK.

I have an appointment to see an oncologist on Friday to be told about the suggested treatment and I don’t mind telling you all that I am absolutely totally terrified beyond belief.

Has anyone looked at alternative therapies, i.e. cannabis?

I hope to hear anything from you guys.

Thank you for reading

Phil

Hi Phill

welcome to our small and exclusive  club that no one really wants to join.

I To was diagnosed  TN2N2NM0 diagnosed June last year 35 radiotherapy sessions and chemotherapy   Cisplatin 

am niw 7 month starts post radiotherapy and was given the all clear 14  January with check ups for the next 5 years. Are you h p v 16+ or haven’t you had your MDT meeting yet ? 

The treatment is  brutal no point beating abiut the  bush the recovery varies person to person but as a 61 year old female if I can do it anyine can amd living my life rising my bike and have some my first 2 hill walks.

your mind will be all,over the place once you get treatment plan and wheels are in motion it does all fall into place .

i ave a blog www.radioactiveraz.wordpress.com give it a read latest post is first so scroll to bottom for  beginning. It’s had over 4000 views and it helped me to do it and hope it’s helped other people from the comments  I have  had.

the is also an link to Anchor  1707  blog on it.

any questions just ask a few if us in here will get back to you.

hazel aka RadioactiveRaz 

Hi Phil,

I had surgery 27th feb 2019. I wont know my treatment plan untill end of next week. Its a bit up and down as my cancer had spread since CT scan in Jan so TNM been reviewed. I was to have surgery only but further tests revealed neck nodes involved, so I had neck dissection too.

Its not where in the country that decisions for chemo are based but are a team decision with oncology. Some cancer types respond better to RT when combined with chemo some dont.Some people are not classed as fit for chemo (like myself).

CRUK has some interesting info on Cabinoids. Its worth a read. Its not a cut and dried any cannabis oil will do, and there is more research being done on the subject.

Some great support on here,so no need to suffer terror on your own.

All the best x

Hi Phil,

Sorry you are joining our club but there is plenty support and help here to get you through this and I have just updated my initial reply so I could answer you and also include blog link.

I was diagnosed with throat cancer , basically right tonsil last June and had 30 sessions of radiotherapy but no chemo. This will depend on size/location/spread and consultant will assess and go over treatment plan in full with you.

It's pretty rough all said and done and although treatment itself is not as bad as sounds, the challenges are the side effects, espacially after treatment stops.

I started a thread on here under Living with Cancer and its titled Radiotherapy for Throat Cancer.
It's a good supportive thread with many of us pulling together to help one another and all at various stages.. Please feel free to join in and also keep us up to date of your progress here.

I have also written a blog, warts and all, and logs my journey from start to date and there is a good section on helpful tips. I was given all clear on 5th March after my PET/CT scan and will now have regular check ups, so the light at the end of the tunnel does exist.

Have a read of my blog and ask any of us anything at all as we are al willing to help.

radiotherapythroat.home.blog

kind regards

Ian

Hi, 

Im sorry to hear about your recent diagnosis. I don’t have any knowledge or experience of tonsil cancer in particular but I do however have knowledge of my mums diagnosis of lung cancer and I’m hoping I can help you answer some of your questions based on what I know. 

Luckily they have caught it early on stage 1 which is as good as you can hope for from such a terrible thing so please take some positivity from that. As I understand it, if they are able to operate it’s good news as this is the most effective treatment as cutting the cancer out could completely get rid of it. 

What I would say though is if you’re ever unsure on such a big decision always get a second opinion. Make an appointment at another hospital and travel to just get some more advice on the situation. We did this for my mum a few times and found it helpful and we also found that a lot of people do this, not just us. There’s nothing to lose in getting some extra advice on the treatment plan as it is such a big decision. 

As for the 4 week wait, this does sound a tad long. My mum would usually have to wait up to 2 weeks for treatment but she never had an operation so I’m unsure if this is the normal wait time for an op. 

I guess a lot of this journey comes down to trusting the experts and letting them do what’s best for you. I hope this helps a little and I wish you the best of luck. Hope it all goes well for you.

L x 

hi, I was diagnosed last week with tonsil cancer,wasn’t expecting the doc to tell me I had cancer and I’ve left not asking enough questions.

all I know is it’s my left tonsil and as far as they can see it’s in a left lymph node.Next week I’m having op and I think biopsy to see if it’s spread anywhere else.Dont know what stage it’s at.except I’m sure he said something about radiotherapy.

Hi London1

Sorry to read of your diagnosis but, a warm welcome to the club nobody wants to join.

I think we all have done the same on getting diagnosis our brain cant take it all in,you get home and chew things over and find you dont remember half of it.

There are some very helpful kind folks on here that have written blogs on their journey,you will find that info very useful.

The treatment plans vary, some have surgery/chemo/Radiotherapy others have surgery/radiotherapy.

Have you had any other tests, biopsy, CT scan, Mri? These are usually done to check for spread and biopsy is done to confirm def cancer.

Im sure Radioactiveraz and Ian will be along soon and will link you to their blogs.

All the best on your treatment journey take care xx

PS: More folks would see your post if you make your own post ie: in newly diagnosed.

Oops sorry just seen that you have posted.Sorry :-)

London I replied on your other thread...copy below

I am same situation, how were you diagnosed? have you had FNA-PET/CT-MRI scans? When you say having a op do you mean a biopsy of the tonsil?

I was diagnosed following referal by my dentist, following FNA I was told lymph nodes contain P16+ probably HPV. You wont get staging until all the other tests are done it takes a bit of time. 

Tomorrow I will discover my fate as I meet the whole team for the first time, to say I am scared is some understatement, it hard to know what to wish for surgery/radio/chemo or combo's of both, it really is hobsons choice!!

My advice, keep off Dr Google if you want a idea of treatment I would recomend two bloggs linked from here.   radioactiveraz.wordpress.com  or   radiotherapythroat.home.blog   both are honest warts and all accounts of treatment, not happy reading but truthfull.  Both these blogg writers are on here first is RadioactiveRaz and the other is Anchor1707 both are really helpfull. I already teamed up with a couple of people on here at the same stage as myself, maybe we can help each other on this sh!!ty journey...Make a frend request if you want to stay in touch.

Clara (above) is one person I made contact with, lets hope we can all help each other!!

Hi Cotswald boy.

Ditto I find out my fate on Friday re further treatment etc. Expecting a revised TNM and stageing as well.

I dont suppose this is unique but I feel its been all very fragmented so far. I went into surgery not really knowing what to expect when I came out as consent form had "plus any other procedure required". So I had a neck dissection and had previously been N0 neck.

Take care & keep well xx

Hi Clara/Cotswald,

Best wishes this week re outcomes to determine treatment.

Please keep us posted on how you both get on and let me know if I can help in anyway once you have treatment plan.

regards
ian