Newly diagnosed Tonsil Cancer

2 minute read time.

FormerMember

26 Nov 2017

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, attended GP's advised to have antibiotics for one week if still there to come back at get referred for ultrasound.

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 !

FormerMember over 6 years ago

Hi bcsp,

Your story sounds very similar to mine. I had a lump that kept going away on the right side of my neck for months and months and figured ah if it's gone away again it's nothing serious.

I was diagnosed with thyroid cancer on Monday.

How are you feeling about the diagnosis? My fine needle biopsy results came back in August and suggested cancer, my surgeon told me he was 90% sure it was cancer, I then had surgery to remove half my thyroid for testing before I could be officially diagnosed. It still hit me like a ton of bricks.

I will keep an eye on your blog for upddtes, take care.

Lindy x
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FormerMember over 6 years ago

Hi there

Mine is a similar story, found a lump on the right hand side of my neck, went the doctors who then fast tracked me. Seen the consultant who carried out an ultrasound who stated it looks normal and don't worry. He then stated he wanted to take a biopsy which he failed to do so 4 times. Then went to have CT and MRI scan and a day case for an IT scan.

As you can imagine mine and the families heads were everywhere.

Got the results back to state it was an unkown primary carcinoma.

Then had a PET scan which pointed to the tonsil having the primary cancer.

Had more biopsys taken to confirm this.

11th September 2017 and the tonsilectomy and neck dissection to remove lymph nodes and glands.

Started my radiotherapy on the 31st October and have 9 sessions left but got admitted to hospital today due to the side effects and weight loss. Side effects of blisters ulcers and throat bleeding and can't take the pain killers . Weight loss just through struggling to eat loss of appetite etc. Lost about a stone in weight. The last thing i wanted was a tube up my nose and down my throat to feed me.....at this moment in time I am absolutely devastated Sat on a hospital bed again waiting for this feed as they call it

Steve@45
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FormerMember over 6 years ago
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.

Anyone else attending Aintree for surgery and Clatterbridge for radiotherapy.

@Lindy: Devastated is the best word to describe how I'm feeling, but positive that I can beat this!! I have a fabulous family and friends who are standing tall with me. We can beat this Lindy, let's kick its ass.

@steve@45: Your story is very similar to mine. Sorry your struggling at the minute, hope things improve soon. I am a little behind you on this journey as I still need my surgery! But I am trying to remain positive as I said to Lindy above.

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

Bcsp
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FormerMember over 6 years ago

Hi guys . I'm a 44 year old male and have just had a biopsy on a lump on my neck. Test results came back as a u3 whatever that means and have been sent to a medical meeting at the QMC Nottingham. My head is all over the place.
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