Hi Nel88.

My husband was diagonosed in may with tonsil cancer (contained) , hpv related which radiotherapy responds really well to, his treatment was 30 rounds on radiotherapy over six weeks. Today his appointment went well with no visable tumour there now but will be having a pet scan in 6 weeks time to check.

I can completly understand your panic i was beside myself.x

Laux

Hi Laux,

Thank you for your reply. Did your husband have any positive lymph nodes or other organ involvement at diagnosis? We're still at the staging process with my dad but from his CT we know he has a large thyroid tumour, a large tonsil tumour and heavy lymph node involvement. Still waiting for biopsy to find out if the cell origin is thyroid, lymphoma or tonsil squamous cell. Also can I ask how your husband was diagnosed? My dad had a small neck lump which grew rapidly over a couple of weeks.

Hi Nel88

I have been diagnosed with throat cancer stage 1 and am currently going through radiotherpy treatment.

It took quite a few trips to GP then twice to consultant to finally told cancer despite being told all fine and just virus. Started with sore throat in January and discomfort when swallowing and although I thought something was more than virus, kept being told otherwise. I knew there was lump in neck but GP felt nothing! but eventually referred.

First ENT approintment referal, consultant told me tonsil was little inflamed but nothing to do with cancer.
Next appointment, picures taken from scope into throat and biopsy then was told cancer and had to have tonsil removed asap and then 6 weeks radiotherpy.

My prognosis is hopeful and i sincerely hope that is the same final diagnosis for your father.

Treatments are quite advanced now and hopefully there is a successful treatment plan for your dad.

I'm not sure if my reply helped, but ask away and I can share anything I can with you with my own personal journey if helps.

Best wishes
Ian


 

Hi,

Thank you so much for your reply. How fast did your symptoms progress from when you noticed a lump?

My dad has multiple lumps, all appeared in the past 3 weeks, a few are very large and hard and involving blood vessels so it's unlikely surgery will be possible. What worries me is the rate at which things are changing with him, it's all very quick which worries me about his prognosis. 

Did you have any positive lymph nodes in the neck? How are you finding the radiotherapy? experiencing any side effects?

Hi Nel88

My husband was diagnosed with squamous cell cancer- primary tonsils with lymph node metastasis in December 2015. He had a cold about 5 weeks before which was when we originally noticed a lump in tne right side of his neck. As a nurse I felt terribly guilty that I didnt insist he went to his GP tben but as he didnt mention it again it was 5 weeks later before he said it was still there.

After an USS ,FNA and biopsy under GA we got the SCC diagnosis.

After seeing the Clinical Oncologist his treatment began in February 2016 - quite a wait as he had to have 4 teeth remived( in the line of the radiotherapy beam , a PICC line inserted and a RIG for feeding.

He had 5 cycles of Cistplatin and 30 fractions of VMAT radiotherapy concurrently over 6 weeks - quite a trial! At his 12 week PET CT scan it was found that the tumour in his neck lymph nodes had not been cleared so he slso had a Neck dissection and lymph node clearance. 

Luckily hes been in remission since July 2016 and we are now on 4 monthly check ups.

As for side effects where do I begin !

The chemotherapy was the easiest part of the treatment- extreme nausea,extreme  lethargy, upset stomach and agitation from the steroids.The radiotherapy was a different matter -in the beginning- loss of taste , lethargy-as the treatment goes on -my hubby had excessive salivation though most people get sa dry mouth,thrush, sticky saliva , radiation burns, inability to swallow, vomiting, weight loss , severe pain requiring morphine. 

The treatment is long and difficult but we made it through and 2.5 years later are living our lives with the long term side effects- nerve damage following the surgery,last week diagnosed with radiotherapy damage to his tbyroid ,permanent changes to his taste and lack of saliva making it hard to manage some foods.

I so feel for you as I have sat and held the hands of tbose receiving bad news and there I found myself on the other side.I wish you and your family luck and am srnding ositive tjouhjts to you all. Please feel free to ask any questions you nay have and Im sure thise here on the forum will do their best to offer support and advice.

best wishes

Emma

Hi,

Well i started noticing myself around Jan.

From initial ENT consultant to saying nothing to second follow up appointment suspecting cancer was around 6 weeks or so.
Im not sure I took in re lymph nodes and told stage 1 cancer, needed operation to remove tonsil then another op to remove back teeth before radiotherapy treatment.

I have just finished week 2 today and so far so good apart from little more tired.

Will post weekly update on my other post as I go on good and bad as aware some more side effects will kick in soon enough.

again, best wishes for you dad and hope you get results soon.

kind regards
ian