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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 RadioactiveRaz

    Hi Hazel 

    once again thank you for your kindness , well it’s helped me and I appreciate that , that’s good news about the nodes thanks for that , yea I will be dreaming of my next holiday to Rome my fav place , that I’ve had to cancel for this year so that’s my place to go in my head 

     

    thank you again maria

  • Offline in reply to Mariag123

    Hi Maria no problem,anither tip ask if like my hospital they have CD players then make up a playlist .i had several on the go and mist if them were 15 min long and I never got to the end of the tracks used the have Queen blasting out or Springsteen thu i the radiotherapy team liked them coz when treatment finished I left them with them for other patients to use. 

    remember  eat and more eat while yiu are waiting I put 11 lb on and to be honest was glad I did has I lost over 2 stone even with feedingbtube 

     

    h x

  • Offline in reply to RadioactiveRaz

    Hi Hazel that’s actually a really good idea , yea once my stomach settles ( they still don’t know what’s wrong) I’m gonna really build myself up , not really looking forward to having a peg to be honest but I suppose needs must

    Maria

  • Offline in reply to Mariag123

    Quick update had peg fitted Wednesday morning and as by my usual standards ended up having to stay in high temp really low blood pressure , but anyway all done only problem I’m in bloody agony with it feels like half my bloody belly been ripped out , did anyone else have a lot of pain ? Hope everyone ok

    maria

  • Offline in reply to Mariag123

    Hi Maria 

    sorry cant help he has no,peg fitted for me. But reading  of other people’s experiences the pain doesn’t last forever. 

    If you haven’t read gamma ray Gary’s blog give it a try he has a peg plus from memory there’s a link to a hospital in Birmingham that gives more info.

    www.gammaraygary.wordpress.com

    good luck and like you say you don’t do things by half !!!! 

    keep in touch

     

    Hazel  

  • Offline in reply to Mariag123

    HI Maria,

    I was offered and had a PEG fitted prior to my chemo/radiotherapy.  This was last December.
    Insertion was no problem at all. However I did find it quite uncomfortable for the first week or so. I cannot say it was painful but felt that having my stomach and skin brought together (by stitches) felt 'wrong'.
    When I ate it felt much better as if things were better placed. The PEG was uncomfortable at night and had to sleep on one side to ease the discomfort.  It all improved after a few weeks but, and to be honest, did not like the PEG much at all. I was glad to be rid of it about a month after radiotherapy. I was told if I maintained my weight okay it could be removed. That set a big target for me and I jolly well met it.
    Maybe not relevant but a medic told me that  PEGs were less well tolerated by people with a little extra to spare around the site.
    I hope the pain with yours resolves quickly. Despite disliking the PEG intensely I am most grateful for mine and very much appreciated the advice from the cons. oncologist to have it fitted. For almost two weeks my PEG did its job VERY well and if anything enabled me to maintain my weight, hydration and nutrition really well during the worst of the treatment. That also meant I could be rid of it pretty quickly once out of treatment.. :)

    Hope all goes well.

     

    Paul x

  • Offline in reply to PlumB

    Hi 

    thanks for reply , I’ve got a really good pain threshold usually but bloody hell this is painful , but I suppose if I need it I need it , are you still having treatment ? 

    maria

  • Offline in reply to Mariag123

    HI Maria.

    I finished my treatment in Cambridge mid January. Another 6 week post treatment check coming up on Wednesday at the ENT clinic.

    What has the medical staff told you about the pain? 

    I recall having a very small umbilical hernia defect repaired under local years ago. The same day I skipped out of day surgery and cycled home. :) The local worked great. When that wore off by the next day I felt like someone had kicked me in the stomach.. as if  I was a rugby ball and they were trying for goal. I was  bent double for almost a week. Jeeeee!!  I just hit the paracetomol and it resolved ok.
    I had none of that from the PEG insertion but naturally was worried it may have resulted in the same.

    Hope you feel better over the next few days and all the numbers improve.

    Paul x

  • Offline in reply to PlumB

    Glad you’ve finished treatment , they said it’s gonna hurt ? But I wasn’t expecting this , that’s exactly how this feels it’s horrible

    maria

  • Offline in reply to Mariag123

    Hi Maria, 

    I'm also recently diagnosed with tonsil cancer with squamous cell secondary spread to lymph nodes in neck. Have 7 weeks of radiotherapy and 2 rounds of chemo starting next week. Having a PEG fitted on Tuesday and I'm just so frightened as having an endoscopy has always been a phobia of mine.

    Have you had the PEG fitted yet? 

    Caroline 

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