1. < Head & Neck Cancer

Tonsil cancer?

Posted by pippa21972 @pippa21972, May 14, 2023

Hi all,

In January this year I developed a sore throat and noticed that a small hole had appeared near my right tonsil with a foul tasting discharge. My GP prescribed antibiotics which didn't help, so I returned and saw a different GP and was again given antibiotics. This cycle continued for 3 months and during this time the hole got bigger and pain has spread down my neck, to my ear and jaw and the inside of my mouth around the hole has become red, hard and raised, and swallowing is painful. I also have a painful lump on my neck on that side. I returned to my GP surgery and saw yet another GP who went mad because the none of the previous GP's had referred me to ENT. Anyway he sent an urgent referral to ENT, I was seen by them in less than a week, and within the next 10 days I had CT scan and MRI scan. Last Thursday (2 days after my MRI scan) the ENT consultant phoned me to say the MRI scan showed an area of swelling on my tonsil and neck area that he is "worried about". I'm booked in for surgery and biopsy next week and feeling terrified. I know I should be grateful about how quickly they are dealing with this, but equally the speed of the whole process has worried me. I'm so worried and keep getting upset. I know that this could be benign but at the same time I can't stop my mind running away with me and thinking the worst. I just wondered if anyone else has had a similar experience.

Thank you
Pippa

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smittyfromcuse | @smittyfromcuse | May 20, 2023
In reply to @slmoore0626 "I’m not sure. I think this was a very early detection and the primary was removed..." + (show)
@slmoore0626

I’m not sure. I think this was a very early detection and the primary was removed with the tonsil. He only mentioned one lymph node and no radiation following.

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Glad to hear it was caught early.

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winstonbuffy | @winstonbuffy | May 22, 2023
In reply to @jersey3422 "I did! In November of 2022 I had a lot of dental work done, including 3..." + (show)
@jersey3422

I did! In November of 2022 I had a lot of dental work done, including 3 extractions. I went back to the Periodontist 3x’s because I had a terrible sore throat. He gave me antibiotics and then meds for shingles. No relief. Then my PCP 2x’s and then to an allergist. It wasn’t until December that I was sent to an ENT. Within 2 days after I was in a surgical Oncologist’s office. She did a biopsy and even before it was sent out she was sure it was cancer. Then the holidays hit and I had to wait for appointments with 2 other cancer specialists. By the time my appointments aligned and my insurance approved my treatments it was now the end of February. I am now finally finished with radiation and chemo but the waiting was ridiculous. Still don’t know if I’m cancer free. I have a PET scan in July. I know the waiting is horrible, but keep pushing everyone to listen to you even if you think you are being a bother. You are your own best advocate.

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I hear you, I had four extractions done and two more tomorrow, going to get my mask fitted on Thursday April 25 and will be starting radiation and chemotherapy in two weeks
Thank you and keep faith

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jersey3422 | @jersey3422 | May 22, 2023
In reply to @jersey3422 "Start using Aquafor as soon as your radiation treatments start. My neck suffered trauma, but not..." + (show)
@jersey3422

Start using Aquafor as soon as your radiation treatments start. My neck suffered trauma, but not nearly as severe as it could have been without it. Praying for your healing. Don’t give up-it gets better after a lot of rest and time.

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Spelled it incorrectly-Aquaphor.

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pippa21972 | @pippa21972 | May 23, 2023

Update: had my surgery today and they didn't take my tonsils out in the end, they've took several biopsies as once they got me under they've confirmed the swelling they had seen on the MRI is definitely a tumour. The surgeon who performed the operation is the ENT head and neck cancer specialist and he is in no doubt that it's cancer I'm afraid. I've got an appointment in derby with him and the oncologist on 9th June and by then they will have biopsy results and treatment plan for me. I feel like this isn't happening to me, I feel like I'm on the outside watching it happen to someone else.

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3 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | May 23, 2023
In reply to @pippa21972 "Update: had my surgery today and they didn't take my tonsils out in the end, they've..." + (show)
@pippa21972

Update: had my surgery today and they didn't take my tonsils out in the end, they've took several biopsies as once they got me under they've confirmed the swelling they had seen on the MRI is definitely a tumour. The surgeon who performed the operation is the ENT head and neck cancer specialist and he is in no doubt that it's cancer I'm afraid. I've got an appointment in derby with him and the oncologist on 9th June and by then they will have biopsy results and treatment plan for me. I feel like this isn't happening to me, I feel like I'm on the outside watching it happen to someone else.

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It sounds like the surgery wasn't as extreme as it possibly could have been, which is good. And personally I think it is wise to hold on to your tonsils as they are a collector of bad stuff rather than to allow it to drift through your entire body.
Now you get to wait and see what the next step is and then take it from there. Yes, it does seem surreal this is happening and not to someone else, but to you. But we are going to beat this because you have living to do. I am here for any questions or concerns. Can you let me know your plan as it develops please? Pippa, we will get through this. Courage!

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smittyfromcuse | @smittyfromcuse | May 24, 2023
In reply to @pippa21972 "Update: had my surgery today and they didn't take my tonsils out in the end, they've..." + (show)
@pippa21972

Update: had my surgery today and they didn't take my tonsils out in the end, they've took several biopsies as once they got me under they've confirmed the swelling they had seen on the MRI is definitely a tumour. The surgeon who performed the operation is the ENT head and neck cancer specialist and he is in no doubt that it's cancer I'm afraid. I've got an appointment in derby with him and the oncologist on 9th June and by then they will have biopsy results and treatment plan for me. I feel like this isn't happening to me, I feel like I'm on the outside watching it happen to someone else.

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If you have any questions along the way please ask. I had the same feeling when first diagnosed that it was surreal and should not be happening to me. Now I have a similar feeling after treatment that it was so strange that all that happened and 6 months later I'm back to "normal". You will get through this.

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winstonbuffy | @winstonbuffy | May 26, 2023
In reply to @pippa21972 "Update: had my surgery today and they didn't take my tonsils out in the end, they've..." + (show)
@pippa21972

Update: had my surgery today and they didn't take my tonsils out in the end, they've took several biopsies as once they got me under they've confirmed the swelling they had seen on the MRI is definitely a tumour. The surgeon who performed the operation is the ENT head and neck cancer specialist and he is in no doubt that it's cancer I'm afraid. I've got an appointment in derby with him and the oncologist on 9th June and by then they will have biopsy results and treatment plan for me. I feel like this isn't happening to me, I feel like I'm on the outside watching it happen to someone else.

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Pippa it was a definite reality check when I was told the same prognosis and yes it took a bit of positive thinking and realized that it was discovered and that someone is doing the best they can to bring you back to normal life. Thank God that technology has advance allot in this field. I start my 7 weeks of radiation and chemotherapy on June 8 , secured my saddle well and ready for the ride of my life.
Stay positive it will get better.
God bless and good luck

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1 reply
slmoore0626 | @slmoore0626 | May 27, 2023

I was also just diagnosed with tonsil cancer. I’ve had 10 biopsies, and a tonsillectomy. A tumor was found in my right tonsil. I cannot begin to describe how painful a tonsillectomy is at age 70 bit I’m 12 days out and mending. About a 5 pound weight loss so far. I am now waiting for a call to schedule robotics surgery to remove the rest of the primary. I’ll also have the lymph node taken out. I will not need radiation or chemo so I feel extremely lucky that this was caught very early and the primary was located and can be felt with through robotics.

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1 reply
winstonbuffy | @winstonbuffy | May 27, 2023
In reply to @slmoore0626 "I was also just diagnosed with tonsil cancer. I’ve had 10 biopsies, and a tonsillectomy. A..." + (show)
@slmoore0626

I was also just diagnosed with tonsil cancer. I’ve had 10 biopsies, and a tonsillectomy. A tumor was found in my right tonsil. I cannot begin to describe how painful a tonsillectomy is at age 70 bit I’m 12 days out and mending. About a 5 pound weight loss so far. I am now waiting for a call to schedule robotics surgery to remove the rest of the primary. I’ll also have the lymph node taken out. I will not need radiation or chemo so I feel extremely lucky that this was caught very early and the primary was located and can be felt with through robotics.

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I don’t know if I’m fortunate or not but at 68 I do not need surgery so far so time will tell after several session of radiation and chemotherapy.
Keep the spirit up and praying all continues to go well for you.

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thebgyn123 | @thebgyn123 | May 29, 2023

Better that they use urgency. I had same thing with urgency after finding lump at back of tongue.. Awaiting pathology
With you in spirit my friend

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