Head neck scc oropharynx HPV pos 16 unknown primary

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I’m not getting satisfactory answers from the drs. 
has anyone had this?  My husband completed ,chemo and radiation last month. We are waiting now for pet scan in April.  The unknown primary is worrying me. Drs say it has to be in the oropharynx are but even having the tonsillectomy, nothing was found.   now thanks to this treatment he has no taste so he is only drinking boost.   I want him well and am so worried I hope I can get some reassurance.   

before he began treatment they did another ct now he has a 2-3 mm lung nodule.  I cannot live w this worry.  They will check that at his pet scan in April.  

  • Hi 

    Primary sites can be notoriously hard to detect.

    Recovery does take time....I finished chemoradio in Sept 2023....taste and appetite slowly returned...20 months on it is about 90% and still improving.

    I ended up in hospital cancer ward for 12 days to stabilise my weight due to inability to eat/take supplements....I now have a healthy BMI

    Our mental health does take a lot of punishment ...for patients and carers...Macmillan has support teams for this....How cancer may affect you emotionally | Macmillan Cancer Support

    Try to stay off Google

    Peter

  • Hi  

    What questions are you asking and what answers are you getting?

    Hopefully you might find some here.

    Very often the only indication that there is throat cancer is a secondary cancer in a lymph node. It will originate from the tonsils, either palatine or lingual, most often the palatine ones in the throat rather than the tongue. Sometimes it is so small even histology doesn't find it and if it's in the base of the tongue, where mine was, a biopsy of the tonsils will fail to find it. Occasionally the body's immune system e system has dealt with it but not before it has spread to the neck.

    Your husband's radiotherapy will have been targeted widely enough to destroy any cancer cells lurking where they couldn't find them on biopsy.

    As for the lung nodule they are very common as we age. I have two that were found on pre treatment CT and like your husband I was rescanned three months after that. No change so labelled benign. PET was clear on those too

    I hope some of this puts your mind at rest

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • now thanks to this treatment he has no taste so he is only drinking boost.  

    I'm presuming he had radiotherapy? 

    Taste will return but it takes time. If he can swallow soft food try things like scrambled,  poached eggs. Pasta. Soups fortified with cream and butter (not tomato) Shop bought puddings and trifles. Ice cream. It's a question of eating anything you can swallow. Eat to live and get better.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi

    I was Cancer Unknown Primary (CUP) for quite some time before it eventually decided to show itself.  Emotionally it is quite difficult to reconcile treatment vs not knowing if the cancer has been fried and poisoned effectively.   In my case for the first few years I had surgery when I was CUP and refused RT - choosing to wait for a "real" target to zap.  I can't say if that was a good idea or not, but it was the choice I made with the full support of my clinical team.

    Eventually my primary cancer decided to show itself a year ago and was effectively dealt with by CRT.  Prior to that I was kept under monthly heavy scrutiny by my clinical team and if I was in the least unsure they got me in between reviews to check me out.  That really gave me peace of mind that they were all over my CUP and allowed me to live my life without being paranoid about every little lump and bump.

    You husband is in the very early stages of recovery.  Things will improve.  I am nearly one year post treatment and have a good quality of life.  I still worry about lumps and bumps, but have learned to recognise what is "normal"  for me now. 

    I can't say that is the same for my wife!  Partners always have it worse than us patients as there is little they are in control of.  At least as a patient I know what my body is telling me and have a degree of control.  As a partner you are just "along for the ride" trying to your your best in a very difficult and distressing situation.  Be kind to yourself.  Find some time for yourself and trust in the clinical team.  They are very experienced and will do their very best for your husband.  If you have a Maggie's nearby you could try and speak to them.  My wife found them a great comfort during a post treatment and thus they backed a lot of pressure off me as i went through recovery.

    Peter
    See my profile for more details of my convoluted journey
  • Hi it’s not unusual for primary’s not to be found in oropharyngheal cancers. So put your mind at ease  trust the treatment it’s brutal but effective at killing our cancers. We have a very good cure rate in fast porosching 7 years this year snd ouving a good life. After treatment is the worse time I started introducing soft foods supplemented by the high calories ensure drinks. At thus stage it’s about calories by any means poached eggs were my go to food soft tinned peaches tcustards ( home made ones were good ate the inside but not the pastry ) I aimed for 2500 calories a day and 2-3 litres of water every day  my ng tube was my lifesaver during treatment  

    Some  weeks 2 steps forward and one step back but there will be light at the end of the tunnel  as many of us in here are proof of that  recovery can be a marathon and not a sprint take everything day by day  I found 6 small plates of food or an ensure spaced through the day was easier than 3 meals a day .

    Blog below might help  

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • What cancer did you have and what stage?  We’re you a smoker?  Ty for your info god bless. 

  • Click on Peter’s name and you can read his profile which has details 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • The thing that scares me is the unknown primary. Can it travel to a new spot when it’s not found?  I worry because pretreatment they saw a 3mm lung module that wasn’t there    What size was your nodule and we’re you a smoker?

  •  I worry because pretreatment they saw a 3mm lung module that wasn’t there

    How do you mean it wasn’t there? Do you mean there wasn’t one on a previous scan? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  •  What size was your nodule and we’re you a smoker?

    I had two 5mm and 9mm

    I was an ex smoker having given up ten years before I got cancer. I also had two bouts of childhood pneumonia which likely caused them. The usual cause is a chest infection in the past 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge