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Tonsil cancer

3 Dec 2017 20:47

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

Re: Tonsil cancer

3 Dec 2017 22:41 in response to DebsP

Hi Debs,

I tripped over your profile whilst replying to someone you had responded to, so a belated welcome from me to the forum that no-one in their right mind would wish to pass the membership test for!

I'm not a doctor or a nurse, but as a cancer patient my advice would be to choose whatever option you think will give you the best long term outcome.

Put even more bluntly - choose whatever you think is most likely to see you alive in five years. If you are around in five years you will be advising other people that side effects are usually only temporary. I had chemo in 2013/14, but the lousy side effects are a fading memory,  I just remember being told that I might not see Christmas 2013 and being adamant that I would be around long after that!

On a lighter note - my oncologist said I should eat whatever I could keep down. Luckily, as well as the boring power shakes, fruit smoothies and soup, this included cake, chocolate and ice cream! 

Best wishes

Dave

 

 

Re: Tonsil cancer

3 Dec 2017 23:06 in response to DebsP

Hi Debs

Welcome to the group no- one wants to join but hopefully you will find plenty of support here. My hubby was diagnosed with tonsil cancer in December 2015 and has been in remission since July 2016 so we’re here to say there are positive stories and we are hopeful for a continued recovery. 

My hubby had a FNA on a lump in his neck that came back as scc on December 8th 2015 and from there on I have to say iur lives changed forever. We went for tonsillectomy and biopsy of all nasopharyngeal areas, chemoradiation- 30 fractions of VMAT radiation over 6 weeks with concurrent chemotherapy- 5 sessions of Cistplatin. Unfortunately the cancer had metastesised to his lymph nodes in his neck so he had a neck dissection in the July - 12 days before our wedding. 

I would suggest that Davek is right - we went for the throw everything at it approach as 18 monthd down the line the side effects are dissipating and we can look to the future.

Wishing you loads if luck and best wishes and Im happy to answer any questions or chat just pm me.

Emma xx 

 

Re: Tonsil cancer

4 Dec 2017 03:03 in response to DebsP

I had robotic surgery July 19th to remove the stage 3 tonsil tumor then 7 weeks (33 sessions) of radiation starting August 21. I was told protocol of these 2 gives a 92%+ prognosis if HPV derived. I think if people skip surgery then the protocol is chemo and radiation. I did not have chemo. I have 2 friends who did not have surgery and they had chemo and radiation, worked all the way through it and lost a lot of weight because it is tough to eat. The radiation disintegrated their tonsils so they did not need surgery. I do not think radiation on its own is too tough but combined with chemo it is difficult. I lost about 13 pounds is all. One guy had a tough case of an intertwined tumor around arteries and the other guy was nervous so he wanted the whole regiment. I was at UCLA. The surgery is tough for about 10-14 days. My radiation symptoms fluctuated. Some naseau. Metallic taste. Tough to swallow.Some thickened saliva. All would come and go. To me the worst was the metallic taste and most prevalent. 

Re: Tonsil cancer

4 Dec 2017 09:03 in response to davek

Thanks Dave,

glad your doing ok! In a plus note your diet sounds good to me .

i wish Thursday would hurry up so I know what’s in store for me. At least we can then plan xmas around it.

Debs

 

 

Re: Tonsil cancer

4 Dec 2017 09:05 in response to buck42

Thanks Buck42,

I just wish Thursday would hurry up so I have a plan!! 

Im ready for anything and gonna beat this,

Debs x

Re: Tonsil cancer

4 Dec 2017 09:08 in response to Newlymarried

Thanks Emma,

i appreciate your reply!

Think it’s going to be a long journey but the sooner I start it the sooner I can beat it!!

Debs x

Re: Tonsil cancer

7 Dec 2017 22:32 in response to DebsP

hi be posative it will work wonders been through similar to u finished on sept1