Tonsil cancer.

Hi Anna, 

firstly i am sorry you find yourself here, it is traumatic being diagnosed with Cancer, and making decisions about treatment even harder when it is all new to you. I was diagnosed with hpv+ tonsil cancer in February. And like you was faced with a lot of different opinions. 
mine was also T2N2.

at my first hospital i was advised to go for surgery robotics. Followed by radiotherapy if needed but no chemo. This was part of a trial to try treatment that might have less toxicity ( or bad , long lasting side effects) at 53 and relatively fit i  was told i was a good candidate. However, i was told that this would save my body the chemo, which comes with its own long term risks. They told me robotic surgery is the newest treatment and likely to be the treatment of the future.

encouraged by my husband i sought a second opinion. Only really to confirm it was the right decision. Like you i am in London. I paid £320 for an hour with The head of head and neck at the Royal Marsden. I was very surprised when he completely disagreed.

he told me that they only used the Robotic surgery in certain circumstances:- when the tumour is very small, very accessible with clear margins, etc he recommended i go down the tried and tested route of Chemo Radiotherapy, as they have a proven track record and developed better planning of radiotherapy so your side effects are less. 
obviously every cancer is different but i did learn that a second opinion is invaluable! Especially if you have access to some of the experts at regional centres like Leeds, London, Glasgow and Manchester.

i completed my treatment 6 weeks ago and although not easy, was much better than my head had built it up to be! 
i moved my treatment to the Marsden on nhs by referral from my Doctor and would say they were brilliant.

i had 30 radio, 2 chemo, and you shoulld be aware that after chemo you are immune surpressed so commuting might not be the best. This only last a week each chemo so i commuted outside these dates until the last week or so as i felt quite poorly and didn’t want to be jolted or knocked. 

anyway, apologies for the long email, just wanted you to know i had had similar dilemma and found a lot of help here online. Feel free to DM me if you want any more info/chat. But more than anything, remember this is a treatable cancer!

Hi Anna

I was diagnosed in May 2018 with HPV+ tumour on the base of my tongue and finished treatment in August of that year.

I was offered the gold standard chemoradiation treatment or a place on a trial having robotic surgery to remove the tumour plus a neck dissection, possibly followed by radiotherapy/chemo depending on what was found.

I opted to take place in the trial and had the neck dissection and robotic surgery in June.  Unfortunately the consultant found during the surgery that the tumour had attached itself to a vascular vein so radiotherapy was scheduled to begin 6 weeks later to give the surgery sites a chance to heal.

Recovery from the surgery was fairly slow and made worse I think by the rt.  Four years down the line I regret having the surgery as I have so many issues with scar tissue on my tongue which is very uncomfortable and makes swallowing problematic.  I also have a lot of discomfort in my neck due to fibrosis which was made worse by the combination of the neck dissection and rt.  Having said that, I may be very unlucky as I've read so many posts where people have had robotic surgery and recovered really well - almost back to normal.  And I never read of anyone having such problems with their tongue as a consequence of the surgery.  Of course I also have no idea how the chemoradiation would have affected me.

Obviously I don't want to influence you either way.  We're all individuals and our bodies react differently to treatments.  This is just my experience and doesn't sound like the norm for many people.

I think you're wise to consider the journey to the clinic for treatment.  If you do have chemoradiation you may well find an arduous train journey difficult as treatment progresses.

Good luck with your decision making.  Any questions just ask - always someone on the forum who can help.

Linda x

I am not saying either is better or worse; it depends on the situation.  Actually I was quoting a physician friend of mine when we had a discussion about different treatments.  It is about what people are trained to do and their clear preference to fulfil that role.  It works in all ways of life - put a train driver and an airline pilot in a room to discuss travelling from London to Glasgow...

Hi Sarah and welcome  thanks for that excellent post

Im glad you have had a good recovery  

Sarah43 said:

he told me that they only used the Robotic surgery in certain circumstances:- when the tumour is very small, very accessible with clear margins, etc he recommended i go down the tried and tested route of Chemo Radiotherapy, as they have a proven track record and developed better planning of radiotherapy so your side effects are less. 

I had a chat with my Maxfac surgeon about this and that is exactly the conclusion we both came to. We were actually talking about salvage surgery to start with 

A lesson here is that nothing is so urgent that you can’t seek a second opinion if you’re not happy with the explanation you’re given. 

PFJTHS said:

  Actually I was quoting a physician friend of mine when we had a discussion about different treatments. 

Sorry Peter. I didn’t realise you were quoting a surgeon friend. I can see how particular specialisms can make for a polarised opinion. If you fancy a long read get a copy of an excellent book “The Emperor of All Maladies: A Biography of Cancer” the first half of which belongs entirely to the surgeon. 
Luckily my surgeon is an enlightened one. 

Thanks Dani, much appreciated. I will check out your blog. Amazing you are 3.5 yrs clear, so good to hear.

HI Sarah, thank you so much for your detailed reply. My Dr/Surgeon recommended robotic surgery to remove my tonsil (tumor is 2.2cm) and margin around it, then a neck dissection to remove the 2 lymph nodes. Have a scan after to determine if the cancer is gone, should it not have then radiotherapy will be needed but no chemo.

The oncologist explained by having surgery and then radiotherapy, which in her opinion she believed would still be necessary, it could change the skin on my neck around the neck dissection, the scar would be very prominent and may heal badly. Recovery needed before RT can start but would be needed within 6 wks of surgery.

I spoke to my surgeon after the oncologist to query why surgery was suggested if RT and chemo would work as the treatment, he advised that I am young (42, always nice to hear) that if I was unlucky enough for cancer to return that I could not have RT ahd chemo in the same area, thus by having surgery first I would 'potentially' be giving myself more options. 

He was also honest enough to say he has a bias for surgery, as does my oncologist (he referred me to her and knows her well). He explained that the treatment for this cancer is very successful and that whatever I chose, he felt very confident I would be fine and to choose whatever felt right for me, there is no right or wrong and no matter what I chose, he would still be my doctor for the next 5 years.

I decided today that I would like to go and see another oncologist to get a second opinion. I need more input and with the information I already know plus the input from people on here, I feel in a stronger position to ask some more direct questions, to hopefully try and get more clarity and help make my decision. I am someone who likes detail but am an over thinker, so this is not an ideal situation for anyone but am feeling very overwhelmed. I just wish I had someone making the decision for me. 

We sadly lost our mum in January this year and my dad passed in 2010, so it is just my brother and I. Pretty crappy year so far but have been taken aback by the kindness of people in this group and others I have come across since being diagnosed, reinstalls your faith in human nature. 

Thank you and everyone.

AnnaVP said:

I spoke to my surgeon after the oncologist to query why surgery was suggested if RT and chemo would work as the treatment, he advised that I am young (42, always nice to hear) that if I was unlucky enough for cancer to return that I could not have RT ahd chemo in the same area, thus by having surgery first I would 'potentially' be giving myself more options. 

Now that is a hugely serious consideration. Not only can't you have RT twice but it increases the likelihood of another cancer in the very long term (think of the more targeted Proton in children). The older you are the less this matters

Anna, 

my heart goes out to you. It is one of the toughest things i have been through, for sure. Your fear is overwhelming  and this pre treatment stage is just the worst as you over think everything. 
i am so sorry to hear you have lost your parents, it is a time when we all feel alone enough due to this horrible, unfair disease,but i did find it so comforting to hear from others who had been through it, and come out the other side.

whatever decision you make will be a good one as they are both ‘good’ options’ for successful outcome. 
my decision was , in the end, simply down to the fact that the Royal Marsden were experts in cancer and that’s all they do day in day out. So i went with the very simplistic approach that they really ought to know best! Plus they had one head of department over both surgery and oncology so they made a joint recommendation.
Once you make your decision everything moves very quickly and you become so caught up in the treatment plan and appointments you genuinely don’t have time to think about anything else.

you are doing brilliantly just processing all of this, the fact that the experts are offering different opinions is just a sign that there are 2 good treatment options with high success rates. What they are really considering is your side effects and long term impact.

the fact that you are so young will probably really help get you through treatment and recovery. 
Good luck with your decision, if you need anything just shout. I have an instagram page called tonsilcancertalk, where i have put a few posts as i went through the process. It seems like a mountain but you will get through it one step at a time!
Here if you need anything. 

Hi Anna, welcome to the group. I am also pretty new here and in a very similar situation to you where I have been given options re treatment. I'm 47, had a T2 tonsil tumour and I chose to have surgery first, so had the tumour and a selective neck dissection 2 weeks ago. I now need to decide whether to have radiation too. It's such a tough decision, I don't believe there is a right or wrong answer. Of course, there is tried and tested chemoradiation, but even then it can come back for some people. If you want to chat I would be happy to connect as sounds like we are in a similar position right now.