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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

Recently diagnosed with tonsil cancer.

17 Dec 2018 22:43 in response to Gazzer

Hi .my brother just diagnosed stage 4 neurondocrine tonsil cancer which spread to lymph node.has to have 4 sessions chemo and 6 weeks radiotherapy after that.is there any hope of a cure does anyone know. Thanks 

Recently diagnosed with tonsil cancer.

2 Feb 2019 23:00 in response to T.fisherman

Hi!

I am 58. In November 2018 my GP noticed my enlarged tonsil & urgently referred me to hospital & removed both my tonsils in December 2018.

After the surgery the doctors told me that the biopsy showed them nonspread tonsil cancer which mostly appears only in salivary gland.

Finally, the doctors gave me a choice to treat me by Robotic Surgery or Radiotherapy. My choice is a Robotic Surgery & it Will be performed after a week. I will let you know the result.

Thank you!

Recently diagnosed with tonsil cancer.

3 Feb 2019 18:31 in response to Tad

YHi Tad

 

giod luck keep us posted I too had tonsil cancer am now 22 week s post radiotherapy still,recovering. 

Inhave written a blog www.radioaciveraz.wordpress.com giving more detail of the type of cancer h p v 16+ plus the radiotherapy and chemo that I had.

 

best wishes 

Hazel 

Recently diagnosed with tonsil cancer.

18 Mar 2019 21:16 in response to RadioactiveRaz

Hi everyone, I do hope you are all well and would love to hear from all you guys who wrote on this thread if possible.

 

My Story is this. On 13th February 2019 I had my tonsils removed. I also had a growth in my throat/base of tongue removed as well as the abnormal channel thing in my mouth also removed.

 

On 27th February 2019 I was told that I have Stage 2 Squamous cell carcinoma of the right tonsil.

 

I had an MRI scan & a CT this week again, last time was in November 2018.

 

On 13th March I was told that I will need Chemoradiotherapy for carcinoma of the right tonsil for 5-6 weeks. So a combined treatment.

 

On the 14 March I had to have an ultrasound even though I had one 2 weeks ago. However this time I also had to have a FNA. After the scan the radiologist told me the result was in the middle or in other words No. 2 between 1-3. Hopefully I’ll find out more on Monday.

 

From what I’ve read here others seem to have had radiotherapy only so I’m wondering if it’s different where you guys are? I’m in the UK.

 

I have an appointment to see an oncologist on Friday to be told about the suggested treatment and I don’t mind telling you all that I am absolutely totally terrified beyond belief.

 

Has anyone looked at alternative therapies, i.e. cannabis?

 

I hope to hear anything from you guys.

 

Thank you for reading

 

Phil

Recently diagnosed with tonsil cancer.

18 Mar 2019 21:57 in response to phil777

Hi Phill

welcome to our small and exclusive  club that no one really wants to join.

I To was diagnosed  TN2N2NM0 diagnosed June last year 35 radiotherapy sessions and chemotherapy   Cisplatin 

am niw 7 month starts post radiotherapy and was given the all clear 14  January with check ups for the next 5 years. Are you h p v 16+ or haven’t you had your MDT meeting yet ? 

The treatment is  brutal no point beating abiut the  bush the recovery varies person to person but as a 61 year old female if I can do it anyine can amd living my life rising my bike and have some my first 2 hill walks.

your mind will be all,over the place once you get treatment plan and wheels are in motion it does all fall into place .

i ave a blog www.radioactiveraz.wordpress.com give it a read latest post is first so scroll to bottom for  beginning. It’s had over 4000 views and it helped me to do it and hope it’s helped other people from the comments  I have  had.

the is also an link to Anchor  1707  blog on it.

 

any questions just ask a few if us in here will get back to you.

 

hazel aka RadioactiveRaz 

Recently diagnosed with tonsil cancer.

18 Mar 2019 23:40 in response to phil777

Hi Phil,

I had surgery 27th feb 2019. I wont know my treatment plan untill end of next week. Its a bit up and down as my cancer had spread since CT scan in Jan so TNM been reviewed. I was to have surgery only but further tests revealed neck nodes involved, so I had neck dissection too.

Its not where in the country that decisions for chemo are based but are a team decision with oncology. Some cancer types respond better to RT when combined with chemo some dont.Some people are not classed as fit for chemo (like myself).

CRUK has some interesting info on Cabinoids. Its worth a read. Its not a cut and dried any cannabis oil will do, and there is more research being done on the subject.

Some great support on here,so no need to suffer terror on your own.

 

All the best x

Recently diagnosed with tonsil cancer.

18 Mar 2019 23:51 in response to phil777

Hi Phil,

Sorry you are joining our club but there is plenty support and help here to get you through this and I have just updated my initial reply so I could answer you and also include blog link.

I was diagnosed with throat cancer , basically right tonsil last June and had 30 sessions of radiotherapy but no chemo. This will depend on size/location/spread and consultant will assess and go over treatment plan in full with you.

It's pretty rough all said and done and although treatment itself is not as bad as sounds, the challenges are the side effects, espacially after treatment stops.

I started a thread on here under Living with Cancer and its titled Radiotherapy for Throat Cancer.
It's a good supportive thread with many of us pulling together to help one another and all at various stages.. Please feel free to join in and also keep us up to date of your progress here.

I have also written a blog, warts and all, and logs my journey from start to date and there is a good section on helpful tips. I was given all clear on 5th March after my PET/CT scan and will now have regular check ups, so the light at the end of the tunnel does exist.

Have a read of my blog and ask any of us anything at all as we are al willing to help.

https://radiotherapythroat.home.blog

kind regards

Ian