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Recently diagnosed with tonsil cancer.

2 Apr 2018 17:45

Hello everybody .

Sadly, I'm now a member of the club nobody wants to join .

I would appreciate some advice if possible from those who have been through this and/or understand the process .

I was diagnosed, (after being messed about for a few months by doctors and consultants), with stage 1 tonsil cancer a few weeks ago .they gave me the choice of an operation or radiotheropy and I chose the surgery. They don't seem to be rushing to operate, (I've been given a date four weeks from now), and I'm worried the cancer will spread  in that time. 

My questions are: Is this wait for treatment usual? Should I have opted for radiotherapy? Would it increase my chances of being cured?

 

Recently diagnosed with tonsil cancer.

4 Apr 2018 14:15 in response to Gazzer

Sorry to hear about your diagnosis. Obviously, i know nothing about your condition other than what appears in your post. However, i was in a similar situation about 2 and a half years ago and my experience was pretty good. I had cancer in my tonsils with some spreading to the lymph nodes. I was put on a 6 week programme consisting of 5 day a week radiotherapy with weekly chemotherapy (Cisplatin). There was still some dodgy stuff in my throat after that so I had surgery to remove it. The histology report from that was still not entirely clear so i had another op in June 2016. I got the all-clear after that. I am on 2 monthly check ups at the moment. Continuing side effects of the treatments include dryness in the mouth and a loss of taste, both of which are improving as time passes. I was told that my sense of taste would take 3-4 years to fully return and it feels like that's on course. I also have loss of sensation in my extremities - hands and feet - and, unfortunately, that doesn't seem to be improving. That was the result of the surgery so not an inevitable effect of RT and/or chemo.

Described like that, it probably sounds a bit grim but, in almost all respects, I'm back to normal and I couldn't praise the team around me - oncologists, Head and Neck surgeons, nutritionists, specialist nurses, radiotherapists etc - too highly. They were fantastic - a miracle that they were able to deliver that quality of service despite all the NHS cuts. And such side effects as I still have are all a great deal better than cancer! Also, bear in mind that cancers in the throat area are among the easiest to treat and have a high (80 odd %?) success rate. Good luck!

Recently diagnosed with tonsil cancer.

4 Apr 2018 21:45 in response to Malcdp

Malcdp. 

Thanks so much for taking the time to post your experience with tonsil cancer. I will keep my fingers crossed for your continuing recovery. Despite the negative aspects of treatment people who been through this tell me about, it's personal stories like yours that lift my spirits. I hope the loss of sensation in your extremities isn't too bad. Was that caused because of the surgery that had to perform on your neck?

I was at the hospital today for a pre-op appointment. As it stands at the moment they are just going to perform the surgery, no radiotherapy or chemo, which I must admit I find a bit surprising. My operation isn't until 4 weeks time, which to me seems a long time away when you've got cancer. I guess I just have to put my trust in the experts at the NHS .

I found people like yourself on this forum to be helpful in improving my understanding of the process I'm about to go through. One member here called Vatch has written a very informative blog about his cancer journey .

Recently diagnosed with tonsil cancer.

4 Apr 2018 22:48 in response to Gazzer

 

Hi there, 

I'm quite new to this page and i've come across your post (and its reply that has touched my heart). Firstly i am so sorry about your diagnosis, from having been on this page merely one night I reckon this will be a good place for family, friends or patients to come for support, advice. 

My father is currently fighting throat cancer (and he's packed a punch!). I'm so glad that they have diagnosed you earlier, as they did with my father. Unfortunately as my father had an earlier brush with cancer when I was two years old he was quite familiar to the process and when they diagnosed him two months ago with the NHS, he initially was to have his surgery in a month like you. But he had the same worry and kept ringing and pushing for doctors to reconsider. Placing the operation in two weeks. I'm wondering if maybe this approach may work for you to put you at ease? 

 

All the best, you have a strong support system online. 

donya, daughter of a cancer fighter and survivor

Recently diagnosed with tonsil cancer.

5 Apr 2018 19:50 in response to donnie1

Hi Donya

Thanks for your post. Stories like yours about you father wining his fight with cancer help me face my situation in a more positive way, thank you for sharing. I'm sure your father will beat cancer again. Especially with your support. 

They've managed to bring the operation forward a week so it's in must under three weeks now. I'm still worried about the delay but all the advice I've had says it won't make that much difference. 

All the best for the future. 

Recently diagnosed with tonsil cancer.

7 Nov 2018 07:54 in response to Gazzer

Hello,

 

can i I ask how this was diagnosed? I have recently had a biopsy to test for it and it’s been five weeks since my op and still no results and starting to worry now!

Recently diagnosed with tonsil cancer.

8 Nov 2018 13:30 in response to Gazzer

hI Gazzer

HOw are you getting on ?  my partner has the same diagnosis and has just had chemo and is now going through radio, .

Recently diagnosed with tonsil cancer.

8 Nov 2018 16:08 in response to TALLULA

Hi Gazza,

Am sorry to hear of your diagnosis and can understand your concerns re wait.

I too have throat cancer stage 1 and had tonsil removed via surgery and am currenly nearing the end of 4th week out of 6 weeks of radiotherapy,

The fact you are just having surgery and no radiotherpy has to be a good sign and would take it they are happy that able to remove completly by this method alone.
I wouldnt worry too much, although I understand you are concerned re wait, but the medical staff will not be concerned about cancer growing in such a short space of time.
I had symptoms as far back as Jan and took 3 GP appointments before referal and took until 2nd referal to diagnose then was immediately fast tracked. So really am saying from diagnosis until final  treatment took around 4/5 months so I wound not worry about growing in the next 4 weeks.
There is no point in going through the radiotherpay treatment as you are not going to get but if you do the treatment is fine itself and just the side effects and assoaciated treatments that cause little bit of angnst.

That said, the whoile NHS team from consultant/advanced nurse practitioner/radiotherpay/support team and everyone involved has been absolutely wonderful and gives your great faith in theor care and in the NHS itself.
In your case Gazza, like myself there is a high rate of cure and although you will have appropriate treatment you are in good hands and your prognosis is good long term.

I wish you the very best and its a good sign that stage 1 and caught soon and fact medical team deem only surgery for you necessary is a further good sign.

Please let me know if I can help in anyway at all, even with tonsil removal and any questions you have or even if you just want to chat, please feel free to do so.
You are not alone and plenty of support both here and in all of your NHS treatment team.

Stay strong and positive and keep us posted on how you get along with your journey.

kind regards

Ian