New Diagnosis

Hi Chrissie and welcome. Sorry to hear about your mum. There are indeed a few people here who presented with lymph node involvement only and I’m sure a few will respond shortly. 
Surely your mum would have to have radiotherapy on both sides if they didn’t look for it at all so no wonder you are all confused. 
I had base of tongue cancer no surgery and radiation to both sides of my neck though less on the unaffected side. 
Im three plus years out and well. 
Hope this helps 

Hi Chrissie and a welcome from me.  I was/am similar to your mother.  Cancer in the lymph but no primary.  Scans indicated tongue, tonsils or nasal passage.  In my case I had various biopsies - tongue and tonsils, full tonsillectomy and all the lymph nodes around the cancerous one removed.  No cancer detected anywhere.  My clinical team agreed with me that there was no value in the trauma of bilateral radiotherapy with no target.  I went onto what is called watchful waiting.  After 15 months they observed a very slight abnormality in my tongue.  Biopsy, and it was a tiny tumour.  A few weeks later I went for a partial glossectomy and the tumour had gone.  Again we decided on no further treatment.  I am not 18 months past that decision and feel absolutely fine, but am followed up religiously.

To have, or not have, further treatment after inconclusive surgery is a very personal decision.  I am comfortable with my choice and the care I am now receiving.  Only your mother can make that decision based on the facts of her individual case.  After the first CUP I was given a 60% chance of a return, but still opted to go without radiotherapy.  As I have said it did return - or at least make itself known for a short period.

I am really well off the well trodden treatment pathway so don't take my story as the safest or best way forward for your mother.  I am not advocating any option, but I think you are doing the right thing to examine the options and potential quality of life post treatment. Happy to have a further discussion if that helps via private message.

Thank you for your reply it’s much appreciated! My mum has decided to go with surgery and hopefully they source the primary, however she will still need radiation and chemo. The risk factors are scary, feeding from a tube and losing your speech etc. fingers crossed is all we can do.

Good evening ChrissieRav, im pleased your mum has decided to go for the surgery, please do not read to much into the risk factors as every procedure carries certain risks but it does not mean everyone will suffer from them. I have had three surgeries with radiotherapy and chemo. Its not going to be easy but take each day as it comes and tackle any problems as they arise, your mum will be in good hands with skilled surgeons and nurses. Your mum will become used to the feeding tube and realise it will come in handy if swallowing becomes an issue. Its still early days for your mum at the moment but im sure with your support she will get through it . A great reply from Peter who has experienced similar. Wishing your mum and yourself all the best for the surgery and treatment afterwards, take care.

                                                                                           Chris x

Hi Chrissie. Remember we don’t get all the side effects it’s just that we have to be told about them. Keep off dr Google stick with us in here we will always try to help..Even though your mum smokes  and drinks has  HPV 16 been ruled in or out as cause if her cancer ? It unusual, to loose your voice during treatment u less they are looking at the larynx area ? Have yiu been told she will loose her voice i had a n g tube it was my lifesaver. treated it as part of my treatment and recovery nothing to be scared about  

Hazel 

ChrissieRav said:

My mum has decided to go with surgery and hopefully they source the primary, however she will still need radiation and chemo. The risk factors are scary, feeding from a tube and losing your speech etc. fingers crossed is all we can do.

That sounds sensible to me. Try not to worry about the effects of the treatment. Yes your mum will need a lot of moral if not physical support but these side effects though tough are manageable. For me I made my mind up to do as I was told by my team. I had nothing to prove by fighting the inevitability of the discomfort I was going to endure. I took my pain relief and laxatives, had an NG tube when I needed it and used it. Yes I felt jolly sorry for the situation I was in and I had a few midnight wobbles on the bathroom floor but I did it day by day and time passed. I leaned heavily on my husband who was my rock, uncomplaining all the way.

Your mum will HAVE to stop smoking. If she doesn't it will affect her outcome. As for the booze but the end of week three she won't be able to and it's a feeling that will likely persist for months after...which will do her well.

Hang on in there, tell her she'll get through.

Stick around. Ask anything as you need to and somebody will help

Thank you so helpful much appreciated 

Thank you so much. Truth be told she is an alcoholic and is also going to need medication to help her with the withdrawal of the alcohol before surgery etc. fingers crossed she comes out the other side of this sober and a new life to look forward too.

Hi! Thank you so much for your reply. HPV ruled out at present and been advised it’s due too life style. At present diagnosis is TxN2M0 Squamous Cell carcinoma and primary unknown / CUP which is why the surgery has been recommended to find the primary which at odds there is a 7 out of 10 chance they will find it . 

Thank you.