Lucie, I had a phone call yesterday to say they had accelerated testing and nothing was showing up on slides to indicate that they had found the Primary.  I now have an appointment at Poole on Tuesday as that is where I have elected to go for radiotherapy (it's the closest).  I should know more about next steps after that.  

I met another lady on Thursday who got the same diagnosis on the same day and is also going to Poole so we are going to support each other through treatments.  It will be a big help to not be doing it alone.

Still positive.

Thanks for the update tuffcookie and good luck with your appointment on Tuesday. Let us know what the next steps are if you get a chance.

It's great that you have met another lady who got the same diagnosis at the same time. It helps to feel less alone to have someone else near you who is having the same treatment too. She's welcome to join this forum too :p

We're pleased to see you are feeling positive!

Best wishes,

Lucie

Update:  Saw Consultant at Poole and she has recommended that I have a neck dissection to take out more nodes for biopsy.  She is also re-running histology on the original node.  I learnt I was HPV which is apparently good news as it's easier to combat virus source than hereditary etc.

We discussed removal of base of tongue at a later date but she is not yet convinced by the evidence.  There is a possibility that I won't need radiotherapy immediately which would mean that it can be held in reserve for the future.

Although the thought of a third surgery so soon is a bit alarming when I am still struggling to swallow from the last lot,  I felt like this was a positive outcome from the day.  I really liked the Consultant too.

Update on my Cancer Buddy; her Primary was located in her tonsils and she is starting down the Radio/Chemo route.  It's a shame that we won't be together but we are still going to support each other and compare notes.

I have also been put in contact with a colleague working in Germany who has had almost identical path as us with a positive outcome.  This lady has been so supportive and helpful and generous with her time.

One of the things she highlighted was that in Germany they make gum shields to protect teeth during radiotherapy.  This seems to be a relatively low cost option and I would like to understand why it is not common in UK.  Losing my teeth is one of the side effects I would most dread.

Hi tuffcookie

I replied to your post about unknown primary in a separate thread but just catching up on this one as there is more about your 'diagnosis journey'. I think it is a positive sign they are holding your radiotherapy back. My doctor did so and it has turned out to be the right decision for me. However my cancer is a different type and SCC is treated differently to MEC, so not necessary the right approach for everyone. Just trust in your consultant's guidance. 

My primary has never been found so there is no guarantee there actually is one. I think that from everything I've read its more likely that there is a primary and people like me are the exception - but the more scans and ops you have without finding anything, I would say the more that chance increases.

Its such a huge thing that you really like your consultant - being able to trust them and to feel like you are in the right hands helps you so much mentally. Being honest my ENT Consultant (when they were trying to diagnose me) was rude, dismissive and arrogant and had terrible people skills - and that was part of the reason I struggled through that part of my journey. His technique of breaking the news that I had cancer was an absolute disgrace; he sat my wife right over on the other side of the room nowhere near me and tried to dazzle me with the technical name Mucoepidermoid Carcinoma without mentioning the word cancer. I think he was more upset about the fact that he had been wrong all along than me actually having cancer. He just wanted me out of the door so someone else could deal with me. Bear in mind I was 33 and my kids were 6 months and 2 years old - it was a scary thing for all of us.

But after the cancer diagnosis my Head & Neck Cancer Specialist was absolutely amazing - from the first time I met the Professor I knew I was in the right hands and I trusted him every step of the way. I knew that he saw me as a human being rather than just a number, and his choices were made not just on the safe or 'easy' option for him, but to best maintain my quality of life as well as keep me safe. He got everything right - I love that man!

Sounds like you may end up watching and waiting too. Certainly from my experience yes the surgeries are tough (one of mine was 6 hours long) but you will be surprised how quickly you recover. And if your consutlant decides you should just have surgery for the time being, then I am living proof that can be the right approach and well worth trying if it even gives you a slight chance of avoiding the rigours and effects of radiotherapy.

Good luck with your next steps!

Leo

Thanks Leo,

Things have moved on.  Further tests revealed that there were cancer cells outside the node so Radiotherapy and Chemotherapy the best option, and on the plus side I won't have the Radical Neck Dissection.  Radiotherapy starts tomorrow for 6 weeks with Chemotherapy on Thursday for 5 weeks.  I am at Poole Hospital which has an excellent reputation for Head and Neck Cancer and I have been pleased with most of the team so far.  I will be glad when the treatment starts as that means it will be over sooner.  I know the side effects and will do everything I can to mitigate them.  I have excellent support from family, friends and colleagues.  I also have contact with survivors of the same treatment which has been a huge help.

I am 3 days in to treatment.  I appear to have reacted well to Chemo as no ill effects like nausea, tiredness or diarrhoea.  Problems with radiotherapy after chemo as I was so hydrated.  Took 2 hours altogether but Day 3 was much easier.  I feel so much better now it's all underway.  Doing all the oral routines, drinking plenty, creaming my neck etc.  It's early days but so far so good.  Only sign is red wine doesn't taste right!

Hi there tuff cookie

so how many radiotherapy treatment are planned?

i also found chemo ok,  but I think it was the amount of steroids I got, taking all that anti sickness stuff 5 times a day was a real pain, but I did it and never got sick with it

make sure that you are not applying a lotion to your neck, use a water base cream, I stuck with e45 think cream ... e45 do do a lotion, but stay off it

feel free to ask anything as you go through this

keep going

vatch

Hi I have just caught up with your thread and my husband had chemoradiation for tonsil scc this time last year. We were lucky to have an ourtstanding ENT surgeon and Oncologist who we now class as friends after the year of treatment. Paul found the chemo ok but always had a massive come down from the steroids on the days he didnt take them so if you get this it may be worth speaking to your CNS or Oncologist as to whether you can take half doses and extend the days you take them. We found this helped with the exhaustion. 

The radiotherapy side effects didnt really kick in until about 4 weeks in and were at there worst 10 days after the treatment finnished. Paul got extreme nausea and a horrible burn on his neck so ended up in hospital. I would suggest :

Use your PEG to keep hydrated and so you are used to it when you really need it.

Try swishing mannuka honey 15 and above medicinal 3 times a day round your mouth and swallowing.

Try Sorbaderm cream for your skin its really kind and hydrating.

Definitely use the Caphasol mouthwash along with Durophat toothpaste and Fluroguard mouth rinse.

Dont skimp on the pain relief - no one gives you a medal at the end for enduring the most - ask for a Morphine patch when you need it - they work.

We used Seabands - the ones for motion sickness to help with the nausea - they might have been a placebo but they helped.

the local cancer care group may offer complementary therapies- acupuncture can aslso help with the nausea.

When your body tells you to rest the do !!!!! Its healing itself.

You will probarbly completely loose your sense of taste - Paul could taste nothing at all - and this can be difficult but it has come back though a little different.

Unfortunately the chemoradiation didnt completely clear the cancer from his lymph nodes so he had to have a radical neck dissection but he is in remission ,back at the gym and we are living life to the full.

Anyway Im sure Vatch has given lots of useful tips as well so good luck and keep in touch letting us know how its going or if you have any questions.

Emma

Emma

glad your hubby is well on the mend and some great advice given hear too

im just over two years post treatment now and I would say my taste is where it is going to stay now

- I still can't do chocolate .... it's too sugary for my teeth and I've just gone off it

- I can enjoy a good fragrant curry but for some unknown reason a korma just tastes like cardboard

- sandwiches are a thing of the past so I have turned to wraps, only due to the lack of saliva

i can deal with all this, we just move on and adapt

happy post treatment days

vatch