Hypo-pharyngeal cancer

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My husband was diagnosed this time last year. He’s had all treatment Chemoradiation although one dose of chemo gave him an AKI (acute kidney injury) it had spread to his lymph nodes in his neck so they have been removed. Ist Pet scan showed a high uptake 3 biopsies were negative although the consultant wasn’t convinced! He was eating well so it was a case of management 3 weeks ago another Pet scan was performed it still shows a high uptake so a MRI with contrast has been scheduled this week. He seems to be now struggling to swallow his voice changed has a lot of mucus in his throat so coughing etc & losing even more weight. He had another nasendoscopy examination it showed again no evidence of cancer. One of his vocal chords are damaged through the tumour. It seems to me that we are going backwards there is talk of removing the larynx. Does anyone think that they just can’t find the spot where the cancer could be? It’s the waiting for results that drives us crazy & now Xmas is on the doorstep so I doubt if we’ll know anything until next year!

Beesuit over 3 years ago

Hi Hip and welcome to the community. So sorry you’ve found yourselves in this situation.
I had a PET hotspot after treatment and biopsy revealed nothing so it’s not uncommon. The loss of weight and coughing are alarming though but maybe it’s down to functional changes in his throat. Radiation damage … that sort of thing.
The waiting is awful I know. Could you contact his CNS to see if anything more can be done?
I hope you get to the bottom of this.
Best wishes

Dani

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

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RadioactiveRaz over 3 years ago

Hi hip sorry you’ve found yourself and hubby back on the merry go round of hospital waiting. Hope the mri with contrast csn he arranged soon and results preferably before Christmas. It’s the not knowing that sends yiu inti overdrive. Try chasing U.K. with his cancer nurses. Unfortunately we have to be proactive even more in these COVID times .

Hope you hear soon Hazel

Hazel aka RadioactiveRaz

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PFJTHS over 3 years ago

Hi Hip. The short answer is Yes. They searched for over a year for my cancer. 5 operations and eventually they found a primary in my tongue - only for it to have disappeared when they went to remove it properly. Initially PET scans did give an indication, but latterly in the search all scans were clear. It was only a very observant surgeon during a scoping that found a slight swelling that was then biopsied to determine primary.

It is a worrying time when they are searching and fully understand that. My only advice is trust your clinical teams, but be prepared to challenge their assumptions to get the answers you both need to be sure of the process.

Peter

See my profile for more details of my convoluted journey

Queeny123 over 3 years ago in reply to PFJTHS

Thanks for all your comments - this is my mum who posted. Unfortunately dad couldn’t have the contrast for his MRI due to his poor kidney function ‍. So now we wait… we’re hoping the MRI will give us some answers . Crazy that this time last year he was first diagnosed and once again it’s going right upto Xmas

RadioactiveRaz over 3 years ago in reply to Queeny123

Hi everythjng x for both your mum snd if course dad. Hopefully they will have results before Christmas for you.
Hazel