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Tonsil cancer

DebsP
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Newly diagnosed Tonsil Cancer - sorry it's a long one !!!

I am 46 years old and my world was been turned upside down.

I found a lump on the right side of my neck, now this lump had appeared back in May 2017 for about 2 weeks but disappeared as quick as it came. Therefore I left it and typically ignored it. So NOW this lump is back........I waited two weeks it didn't go, attendedGP's advised to have antibiotics for one week if still there to come back at get referred for ultraseeound.

November 15th 2017 - Attended clinic, had ultrasound and fine needle aspiration, left clinic with doctor saying he thinks it suspicious  of Lymphoma or brachial cyst.

November 16th 2017- Telephone call to attend MRI on 22/11/17.

November 17th 2017 - Telephone call to attend PETCT on 21/11/17.

The telephone call for the PET scan came late on the friday evening, this scan request worried me. Its a PET scan I couldn't help thinking they use this test to STAGE!!!! OMG this means ive got cancer!!! I got to prepare my family for this!!!

MY MIND WAS ON OVERDRIVE.

Anyway i'm the type of person who likes to protect everyone else's feelings even if it means neglecting mine.

I attended both Scans not the most pleasant experiences but hey ho needs must!!

D-DAY 22nd November 2017 (my husbands birthday)

I went to clinic with my husband and son as I knew it was bad news!!! (don't get me wrong I'm not a quivering mess or woo me). They are both trying to be positive. The clinic was delay by an hour due to delivering bad news to another patient...... my son (26) bless him said oh that means your ok! I explained its doesn't quiet work that way.

We went into the room and there was my answer right there!!!!!! .......... The cancer diagnosis........the BIG C and no one had even said a word. ................The Macmillan nurse sat there in the room!!!

The consultant examined me and then said unfortunately I had cancer, the fine needle aspiration of my neck lymph node had shown cancerous cells. The MRI scan had confirmed my Right tonsil to be the primary.

The PETCT results are not back!!!

The likely pathway as explained that day in clinic is.

Biopsies under GA and remove any problematic teeth.

Surgery then to remove tonsils etc and radical neck dissection.rest for 6 weeks then 12 weeks of radiotherapy (mon-fri)

This is if the PET hasn't changed the outcome. The results are back but the consultant has to tell me and that will be biopsies surgery day.

So fingers crossed it has spread anywhere else.

Is my planned pathway much different to anyone elses?

I will update with staging !

On Thursday 30th November I was admitted to theatre for a biopsy of my right tonsil, examination of throat and mouth and extraction of 1 tooth that had root damage.

I was very nervous but this is the easy step....... RIGHT?

I feel a little rough following this surgery...... very tired, but then was very tired before so think that do with the cancer not the surgery!! Throat is a little tender but nothing that has stopped me eating!!! Making the most of it while I can.

The good news I woke up too is that they were no signs the cancer had spread in my mouth and that my PETCT scan was clear.

So left hospital with an outpatient appointment for December 7th.

My biopsy results, scan etc will be discussed at Aintree Head and Neck MDT on December 6th.

So The 7th should be bring some answers to my treatment plan. My consultant has asked me to consider my options and think about questions for the outpatient appointment.

Options prior to MDT:

Radio chemo therapy no surgery

Surgery tonsils lasered, radical neck dissection then radiotherapy

As above with chemo/radio

My first thought is take it all away and blast it with everything they can!!! But in relatity it's not that simple is it!! I need to consider side effects and complications.

The specialist nurse has said to increase my calorie intake prior to surgery but being on the chunky monkey side I don't feel I need to do this..... I have enough padding to be able to lose some through the treatment.

If we can all support each other we CAN and WILL beat this.

 

Bcsp

  • Offline in reply to Leeangela

    Hi 

    yea would be lovely to keep in touch xxx

  • Offline in reply to Mariag123

    Him maria Oh dear not a good start sending hugs , let me know when you feel up to it. 

    Try and keep,positive hard I know

     

    Hazel x

  • Offline in reply to Leeangela

    NHi Lee This Is Hazel I am niw 9 month post radiotherapy for tonsil cancer right side 35 radiotherapy 2 chemo Don’t be afraid of the mask making look at it this Way it’s going to hurt  the mask more than you mind set. I personalised mine gave it a name spoke to it every session mad I know but mynway if dealing with it. Brought it home after treatment she’s in the garage waiting for Halloween to scare the kids  lol  

    i have a blow by blow blog at www.radioactiveraz.wordpress.com with it being a blog scroll down to the bottom for the beginning 

    anyway welcome to the club that none of us want to join but here we are a tight little bunch who try and help each other out 

    take care 

    Hazel 

     

  • Offline in reply to RadioactiveRaz

    Hi all so scans came back clear no spread thank god , have appointment at addenbrooks on wed ( still in bloody hospital though) to discus treatment but have been told there standard is 6 weeks radiotherapy and six chemo sessions , also got to have a peg fitted, so if anyone has any questions I should ask on wed fire away because I think I’m gonna be in a bit of a daze haha 

    maria

  • Offline in reply to Mariag123

    Hi Maria,

    good news abour scans.

    Appointment 

    Just general but I would suggest you ask to get radiotherpy appointments first thing if you can. It gets them out the way and leaves you rest day to recuperate / take meds etc..

    Ask about back teeth extraction and whether this is going to have to be done before radiotherapy and will you have appointment with dental consultant.

    Obviously ask when treatment likely to start.

    Pain management / medications and intention

    Make sure weekly appointments with medical support team are factored in

    Imagine you will want to know more about the ins and outs re peg. I didnt have one fitted so cant say, but I'd ask about in general terms what processs is.

    Has mask been made yet and if not when ?

    Only my view but I would suggest you take someone with you along with pen/paper to write things down. Have all your questions written down as well and take in to make sure all what you want to ask is covered.

    If I think of anything else I'll PM you.

    Best of luck and my good wishes to you.
    As always here if you need me for anything

    Try and stay as positive as you can and remember that I have said here many times that the light at the end of the tunnel actually exists.

    Onwards & Upwards

    Ian

     

  • Offline in reply to Anchor1707

    That’s great thank you so much will start jotting all those questions down 

    thank you

    maria

  • Offline in reply to Anchor1707

    Hello all I decided to have my scan on Monday an had my results Thursday and and it was good news im so happy thanks to you all for your support xx

  • Offline in reply to Mariag123

    Hi Maria once again can only echo Ian’s comments take someone with you to take notes. Don’t be intimidated ask if you don’t understand anything or want it clarified. Anything u want to know just asknon here. 

    Inecwuestin ssk what your status is ie h p v 16 + plus sizing. I was T 2 N2 NM

    whichvwss tumour size between 2-4 cm was nearer to 2 plus no was 2 lymph nodes but by time treatment started it had gone to several more nodes. 

    Nm was no metastasis 

    good luck hazel xx

     

  • Offline in reply to RadioactiveRaz

    Had meeting yesterday, not what I expected really , just a quick chat with main man then taken away by another Dr (who was lovely ) to explain the treatment I will be having , having mask made next week , then my treatment starts 3weeks on Monday , worries me a bit because I have it in my node in my neck what if it starts to spread by then ? Got given loads information that I’ve not looked at yet such a lot to take in , but take comfort from everyone on here that have got through or are going through it , proves it can be done , once again thank you to everyone that has spoke to me and will keep updating as I go along , might even try a blog like Hazel and Ian because that has really helped me , thanks again

    Maria

  • Offline in reply to Mariag123

    Hi Maria 

    the blog for me was therapeutic it was the only thing I felt in control of what in reality was an uncontrollable situation on my part  now this year I’ve had 4600 views last year 3500 so if I’ve helped one person all the better . Plus I found it helped family n friends in trying to understand a little part of what was happening  

    dont worry re nodes the treatment for me was similar to you I had originally 1 lymph node then at my last pet ct scan just before first radiotherapy another few lymph nodes had started to catch the dead cells. My oncologist explained it was perfectly normal as they were doing the job of catching the dead cells from my tonsil and the radiotherapy plannwas twesked to take into account   The way to look at it is they lymph nodes are like a waste disposal unit holding the rubbish. True to his words byvweek 4 of my treatment the big node in the space above collar bone had gone which bode well for the others. So my advise eatcas much as u can in these next few weeks . Remember the crucial thing is the treatment plan getting that right 

    get your mind in gear for what’s to come. I had in my head a selection of bike rides or favourite walks that if I lied down let my mind run through them time uo to 15 mins n on the treatment table when mask on re run them

     

    good luck keep in touch H xx

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