Mother diagnosed with Head and Neck Cancer of unknown primary.

Hi Herbo and welcome. 
Sorry to hear about your mum. 
PFJTHS Peter is on a similar road. 
Click on his name in my post and you can look at his profile where he has a few details. 
Im sure he’ll be along soon with his wise words. 

Hi Herbo as Dani said that is me.  Very similar to your mother in symptom and diagnostics.  It can be quite worrying and trying being CUP, but the clinical teams are really good at making sure you are safe.  After having tonsils removed as well as all the lymph nodes on the side where they found the cancerous one and multiple tongue biopsies they could not find my primary.  Scans clear as well as scoping every 2 months until around 15 months after I went to the GP with the original lump.  At that appointment my consultant noticed a very small area of concern.  I did not know there was anything there.  Biopsy found a tiny tumour - probably too small to see on any scan.  I went in for a partial glossectomy and the tumour had gone!  It has now been 15 months since that event and I am still here and living a great life.

I elected not to have "preventative" radiotherapy after the surgery (both first and second time around) as there was no target or good evidence to say I would benefit from it.  That is held in reserve in case the cancer reappears.  That route is not for everyone.

If they suggest your mother goes onto "Watchful Waiting" then that may be the most appropriate route - it was what I was on.  That said make sure that she is comfortable with that approach.  Happy to discuss in more detail if you want - just private message me.

Hi welcome From me as well sorry you find yourself on here on behalf of your mim. I too only had a lump in my collarbone no other symptoms I could swallow eat and drink. It’s possible the pet ct even May pick up the location or the investigation while she’s being looked at. 
Mine

was in my tonsil soft palate and lymph nodes.

Any questions just ask ,of she is CUP we have Peter who is a fountain of knowledge.

Hazel 

Dani/Peter/Hazel

Thank you so much for your time in responding to my post. It is greatly appreciated.

I will be spending some (not all) of the extended bank holiday weekend educating myself and reading your previous posts/blogs etc. 

Thank you also for offering to answer any questions I may have and I will be in touch as soon as the final diagnostic tests are completed.

Herbo said:

I will be spending some (not all) of the extended bank holiday weekend educating myself and reading your previous posts/blogs etc. 

Knowledge is power but beware Google, please. It's a really useful place to look but it's also full of outdated information, alarmist stories and statistics that are largely meaningless as they are so retrospective. The best places to find out things are your mum's support team and folk on here. Don't hesitate to ask about something you don't understand. There is a CUP forum here on Macmillan but head and neck CUP tends to be somewhat different from the others so probably best stay here...but that's not to say you shouldn't post there. It's HERE

Best wishes and let us know how she gets on.

Dani

Thank you for your reply.

Must admit Dr Google alarmed me quite considerably in the beginning and then I realised like you said outdated information and alarmist stories. 

I will certainly keep this thread updated with my Mothers progress and how she is getting on. 

Kind Regards

Alas the CUP forum is rarely utilised.  I check on it every week just in case but it must be at least 2 months since there was last a post.  As Dani says - best raise the issues on here.

Hi All.

Just a quick update. The PETSCAN which also scanned the abdomen has the found the primary location.

The primary site is base of tongue and we have been told it's in the early stages and very treatable. The size was described as very small.

A biopsy under anaesthetic was taken yesterday.

Likely treatment will be 6 weeks of radiotherapy. But treatment options will be discussed at her next appointment. No mention of neck dissection which did surprise me.

Interestingly my Mother told me yesterday that for approx the last 3 years that every now and again she has coughing episodes when food catches her throat in this area. Not sure if this a sympton of the primary, but it may have been a subtle clue.

Hi Herbo

Pleased for your mum they have found the primary. Neck dissections aren’t always offered I never had one. I had 7 weeks radiotherapy and 2 out if a planned 3 chemotherapy.One question to ask  is your mum h p v positive e has that does effect Hiw the tumour reacts. That’s a question for when you meet the oncologist. Your mums almost 4 years behind me  in treatment terms. I had my biopsy 19 June and treatment started 14 July. These next few weeks will be a whirl of appointments mask making dieticians etc.  i was 61 when diagnosed and fairly fit.Am now happily living my life. 
best wishes Hazel x

Glad they have the primary.  Although any treatment options for these cancers are really quite rubbish in their side effects at 76 it is probably best to keep away from surgery if she can.  Keep with us for tips and tricks on how to help her and support yourself as she goes through and beyond treatment.