Hello - waiting on scan results, tonsil cancer

Hi Coco Cat.  So sorry to hear your news. Good that they have found it so quickly.  It is a hard wait until you have your next appointment to find out your diagnosis and treatment plan.  Before my actual diagnosis I had no clue as to what it actually was and frantically turned to Google. Not a great idea.   All I had been told was that they could see a tumour. I hadn’t found this amazing group then.  (I found it shortly after diagnosis). When I went for my appointment to get the results of the scans and biopsy, the room was quite busy.  I know all Trusts are different but just be prepared for that. Take someone with you to really focus and listen. There’s a lot of information to take in and for me it was all a bit of a blur. I took my husband.  There were about six medical professionals in the room including my CNS nurse, two speech and language therapists, the consultant, a nurse and another member of the ENT team. they told me my diagnosis and all the things that would happen pre treatment (mask making, Peg, teeth etc).  And where I would be having the treatment.  My care was and is amazing. I am now 10 months on from treatment and doing really well. But it was a very hard journey. This group was an amazing support for me. Sending strength and wishing you well.  
SCC T3 N1 M0 right tonsil hpv +

Thank you for your reply. I'm really glad I have found this group as I feel a bit more prepared for the meeting and have complied a list of questions to ask. Glad you are doing well.x

Hi Coco Cat 

So sorry to hear they have found cancerous cells… this is such a horrible and scary time for you and your family.

Im sure your team will act quickly and formulate a suitable treatment plan asap.

My advice is stay off google, keep your anxious brain bisy, do all the things you love to do walking shopping seeing friends/ family and eat all of your favourite foods.

I was diagnosed in August last year at 55 ( have two boys) gelt like my world was ending ….. but thanks to Hazel , Dani and other wonderful people Ive made it through treatment( end of nov) and now in recovery stage. It is brutal but as everyone says its doable xx

Make sure someone can right down things for you at your appointments , me and my husband would leave and both of us couldn't remember a thing!.

Once treatment starts the anxieties and fear of the unknown( which we all had) seem to go and your focus will be on getting through this xx

Thinking of you

Debbie

Thank you Debbie, just trying to keep busy and get my son organised for joining the Navy. I'm hoping he'll be in basic training by the time the treatment really kicks in. I'm glad your through your treatment and hope it keeps away. Jacky

Hi Jacky 

Thats a good focus for you, how exiting for him

I didn't tell my sons till week before I started chemo/radiotherapy   as my youngest had his 18th birthday party coming up and week after his driving test … I wrote them identical letters with the basics and focused on the high cure rate (for hpv driven Head&neck cancers).Youngest asked loads  of questions then we all cried and hugged each other!! 

I was so sad and worried about telling them but they were so resilient.

They have both been amazing through this and continue to love and support me every day x

Im sure your sons will do you proud through this tough time .

Stay on the site and post whenever you have a question or just need some support 

Debbie 

Debbielouise said:

They have both been amazing through this and continue to love and support me every day x

How we underrate the resilience of our children! My first thought on finding my cancer was that I had really seriously let my family down and that all I was going to be was a huge burden till I died. 
My husband wrapped me up and kept me wrapped till I got better. My daughter told me I was beautiful with a nasogastric tube stuck up a nose surrounded by a haggard face. 
Kids are amazing ! 

How come you didn’t finish the chemo

whst happened 

Hi nothing happened I responded extremely well to the treatment and by week 5 my large lump in neck had gone. I had no side effects eg no tinnitus and in joint consultation with my oncologist we decided not  take the 3 rd chemo. I was hpv positive and the chemo in total adds around 6% to the final results. What chemo does is make the tumour more responsive to treatment. Someone going through it when I did  had 1 chemo he was affected with tinnitus straight away so he took decision no more. My oncologist in 2018 said around 60% of his patients don’t complete the full chemo. But once radiotherapy starts that must continue. I’ve friends who contracted Covid in 2020 but continued they weren’t allowed to stop used to be the last person at the end of the day. 
Hope this helps. 

Hazel 

Were you still able to speak

Hi yes all the way through treatment I never lost my voice. I’ve been on here over 6.5 years and can’t think of anyone with tonsil cancer who has lost the ability to speak. I was hoarse occasionally but that was more lack of saliva in a morning.

my singing isn’t great but it wasn’t before so no loss there. . 
Hazel x