Tonsil cancer

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

  • My treatment is at the well known hospital in Leeds. X

  • Oh ok shame not same one haha 

    maria

  • Hi Caroline

    This is Emma aka newly married! Just to say there is definitely light at the end of the tunnel. My hubby was diagnosed with squamous cell cancer of the tonsils and lymph node tunours in Dec 2015 and after 5 cycles of chemotherapy and 30 fractions of VMT radiotherapy plus a neck dissection he has been cancer free fir 3 years on the 8th July( you will remember all the important days as they will be indelibly etched in your brain) 

    Its definitely true that the treatment is gruelling and terrible at times not only for you but fir those supporting you too but the dark days are definitely worth going through to achieve a successful outcome.

    3 years down the line life is pretty much back to normal for us. We have had to make changes but we are both non smoking, minimal drinking, vegetarian gym goers anyway. 

    Paul can now eat anything even the holy grail of crusty french stick ! so long as he has water - his saliva has returned but in smaller amounts. He does have silent refux from the radiotherapy damage to his throat and the radiation has also damaged his thyroid gland so he takes thyroxine. He has difficulty with dry mouth in air conditioning and if he talks for long periods of time and The Voice are not going to be calling him anytime soon re his singing prowess! There is residual fatigue but it’s manageable. All of these things he says are worth it to be here and living life to the full .

    Try to stay positive- it will be hard but you will get there - take each day as it comes - have no expectations and don’t measure your progress on that of others as everyone is different.

    As Hazel says onwards and upwards - this is just a turn in the road - an inconvenient one but one to be travelled at your own pace.

    Best wishes and good luck - were here to support you along tge way.

    Emma xx

     

  • Hi Emma, 

    Thank you so much for your reply., it's so lovely of you to take the time to reassure me. I'm still in disbelief mode but with the treatment starting this week it is all becoming a bit too real. 

    Caroline