Tonsil cancer.

Hi bob 

sorry to hear things are still tough with dry mouth, I find drinking water to wash things down easier, 10 weeks now and taste is still hit and miss, hate picking up something I used to love and it not tasting right! I didn’t like the shakes so I just pushed myself to eat really and I fainted a few times where I was weak so I just thought right I need to eat! I’m so pleased I pushed myself I went out for a burger and chips the other day and with water ate the lot! Hope things have improved for you a bit more now, summers not helping with dryness is it! 

hope your well x

Delilah said:

I went out for a burger and chips the other day and with water ate the lot!

Oh Wow Delilah! The bun as well? 

I am still pretty reliant on the Ensure Shakes for nutrition as I can't eat much meats. The dietician reduced my intake of the Shakes from 3 to 2 on May 23rd and I have lost 2kg (4-1/2lb) in that time so I will need to speak with my GP on the way forward.

I am glad to hear that you are managing well as that gives me real hope 

I finished my treatment of 5 chemo sessions and 30 RT on 5/11/21 for left tonsil cancer which had spread to the lymph gland. My treatment was tough but I was lucky to be able to eat throughout plus continue with yoga. This and distractions from family and friends so helped me. I have had 2 checks at the hospital so far with clear results, it is nerve wracking though returning back to the hospital. My taste is getting better and I can now eat all my favourite spicy foods but can’t taste sugar and have some dry mouth but can do with out the dry mouth tablets at night now.. I try to drink loads, but it has to be fizzy water though ! I was thrilled to be able to go on a horse trail ride to Portugal for a week, riding is my passion and it really made me realise how far I had come since December. Recovery does come at its own pace, sometimes in very small steps but they all add up. Well done for getting where you are now xxx

Hi everyone,

I am new to the group, recently diagnosed (June 29th 2022) with oropharyngeal cancer. Stage 2, HPV +, on my left tonsil and 2 lymph nodes. I have been offered surgery, radiotherapy, chemo, mixture of. 

I felt quite sure I would have surgery at first, as I want to have it removed but on my first meeting with an oncologist last week, she queried why was I considering surgery, citing chemoradiotherapy would be sufficient to treat me and that having surgery, the neck area may be more affected by radiotherapy (due to neck dissection and scar healing). 

It’s a fortunate position to be in having options but it’s also quite overwhelming trying to figure out what to do. Has anyone on here been in the same situation trying to decide on whether to have surgery first? I was just hoping to get some insight into peoples decisions please.

My treatment is being handled in London but the oncologist I saw operates from a clinic that is an awkward commute. I’m considering seeing another oncologist who works out of clinic closer to the main station where I travel in to. Having been told that the further into chemoradiotherapy I get the progressively worse I will feel, I’m trying to think about my commute and whether I should be factoring this into my decision about a treatment clinic. 

Any advice on the above would be super helpful. 

Thanking you all in advance.

Hi Anna and welcome to the group. I had base of tongue cancer and no surgery. Lots of people here have had radiotherapy or chemoradiation only. I’m three and a half years clear. 
As for how you’ll be during RT. We all vary but it’s likely that you are going to need help in the last couple of weeks. Chemo days too are long and you’ll need a lift. 
You’re unlikely to see your oncologist once treatment starts but you will for check ups. So you’ll be based where your RT is. 

Hi Anna welcome from me as well I’m almost 4 years post radiotherapy for tonsil cancer with several affected lymph nodes. Chemo radiation is the standard good care that’s offered. I couldn’t have surgery as one if my lymph nodes was too close to spinal cord. I travel 90 min sone days as my journey was to Leeds cabs traffic could be bad. My blogs below might help any questions just ask. It’s not easy I was 61 when diagnosed if I can do it anyone can xx

Hazel xx

Hi Anna and welcome from me.  My initial diagnosis was sort of like yours, but after that it became a complex chase the primary game.  Anyway, I had my cancer diagnosed from the lymph node, HPV+.  Scans at the time indicated in the area of the tonsils.  I opted for surgery which eventually involved 2 neck dissections, tonsils removed and tongue operated on.  I did not progress onto radio (or chemo) as in my particular case there was no valid target for that treatment.  I am now 18 months post the last operation and absolutely living life to the max with side effects from the surgery that are quite liveable with.

Your oncologist is quite right that surgery MAY have more side effects than their proposed treatment.  However, it can easily be the other way around.  When you consider the options you have to remember that a surgeon is trained to cut to cure and an oncologist is trained to burn and poison to cure.  A bit harsh, maybe, but they are both specialists in what they do and not necessarily appreciative of the others skill sets and options.

Depending upon what the surgery finds you may still need the radio (and chemo).  What is essential are the "clear margins" around the tumour when they remove it.  If they are good then it is possible that will be the end of the treatment.  If not then you may need the services of the oncologist.

I think you need more information to make the decision and especially discuss the side effects - short and longer term.  Whatever you decide it is your personal choice based on a whole range of issues that impact you.  However, whatever option you choose generally has a very high cure rate even if the return to normal life can be a little slow.

PFJTHS said:

When you consider the options you have to remember that a surgeon is trained to cut to cure and an oncologist is trained to burn and poison to cure. 

Well I was a surgeon and sometimes cutting is worse than being burned. If my tongue had been cut I’d have lost the entire organ. Burning it has lost me only a small bit at the back which I don’t miss. 

Hi Anna, I was diagnosed with exactly the same in January, welcome to the club no one really wants to be in, and don’t worry about the panic and confusion everyone feels like that when you get that news. I’m in Essex and saw both surgical consultant and oncology consultant, luckily they made decisions for me and decided 6 weeks radiotherapy and weekly chemo was the way forward. I asked about surgery as like you my initial reaction was quickest way to remove it, my consultant said I would have to do radiotherapy anyway so why add a surgical procedure when I don’t have to. It made sense and I trusted the professionals. Maybe chat to your macmillan nurse about your worries and the consultant as they should offer guidance. I can’t talk about surgery, but I’m 3 months post treatment, just had PET scan so waiting results, the treatment is not the easiest I’m not going to lie but you will get through it, try and pump on some weight now and remain as positive as you can, try to take each day as it comes and by a wall chart and tick those days off, keep the end in sight! Everyone here talks of this treatment working, fingers crossed mine has too, everyone’s experience is different, I remained with a group of 6 people everyday having same treatment, we all had different symptoms and battles, so try not to listen too much to others stories. If you’ve had children it’s like when your pregnant everyone has their own story but yours ends up unique to you. I’m here and so are all the others, I found this site helped me just to know your not alone. Just shout or message anytime. X

Thanks Peter, I really appreciate your detailed reply. Having options is a good thing and as you mentioned and both my Surgeon and oncologist have both said the same, both treatments are highly effective.

My surgeon also explained that each Dr has a bias to their field of expertise and in my situation there is no right or wrong, it’s personal choice. 

I’m making this decision on my own and learning all the side effects of each it’s not an easy one to make. Not helped by the fact that both Dr’s are each on holiday for the next 2-3 weeks. Anyhow, will continue to try and navigate this new world. 

Big congrats on being 18months post op, wonderful news and very encouraging to hear your living a good life. 

All the best 

Anna