Hi This is my first time posting and was hoping for a bit of advice and well, reassurance !
My partner, Rob was diagnosed with SCC on the floor of his mouth in October last year, had op to remove it. He finished 6 weeks of radiotherapy on 06/03/24, he coped very well and only suffered from it in the last week and about 2 weeks post radiotherapy but he managed. Then we started the road to recovery, beginning to start eating food again (he has a PEG tube).
He saw his consultant on 03/06/24 who ordered scans, which came back clear, but it was that week he caught covid, he became very poorly and stopped eating, mainly because he was like Rip Van Winkle and slept the whole time but as he still has his PEG tube we was able to keep him fed etc.. anyway when he recovered he went back to eating, like horse really, stuffing lots in (although we were PEG feeding his weight did drop to 8st 7lb). After a week of this his mouth became painful. He began to eat less, so we went to his GP on 28/06/24 for better pain relief (he was on Oramorph and he was already on pregabalin for a pre cancer complaint, 150mg a day). His GP had a look in his mouth and said to increase his Pregablin gradually to 600mg a day, she also prescribed a strong dose of antibiotics, for inflammation.
So this is what we did, but it made no difference apart from making him absolutely off his tits (apologies for uncouth description !). The pain was increasing and watching him try to eat was like watching someone eat glass. Then the pain got so bad that he could barely talk. Again we are back to being entirely PEG fed. I will add at this point that he can drink normally, so still has swallow reflex. So I said right we are going back to the GP as this pregabalin has done nothing but turn him into a bear like creature that just sleeps and then gets up, growls a lot and then back to sleep ! But Rob said I think I need to go back to the hospital because the pain feels the same as the pain pre cancer operation. I looked under his tongue and there's a mass under his tongue !!! So I took a photo of it and I made an appointment with GP for better pain relief and emailed for an appointment with his CNS, dietician and speech therapist ( we see them all in the room at the same time) sending the photo in the email. The doctors appointment turned out to be a nurse appointment and she asked me to send the photo to her so she could see the GP but urged us to get appointment with consultant. His CNS said they would make an urgent appointment with consultant. Then I get call from the Nurse at the GPs saying she showed the Dr. and that she saw it there when we went there on 28/06/24 but it has since grown considerably bigger !!!! Which frankly left me speechless as it's in the exact same place as where his cancer was and cant understand why she wouldn't have urged us to get it checked out there and then ! Anyway what's done is done, so the nurse said we need to make the consultant aware that in a month it has "grown considerably bigger". She said the Doctor had also prescribed 20mg of Zomorph twice a day to help with the pain (on top of the 600mg of pregabalin). This just made him even more high as a kite but the effect wore off within 6 hours. So when we saw CNS she upped the dose to 30mg twice a day ... and yes it is like living with a permanently drunk person but still it doesn't last the 12 hours but at least for most of it he is not in so much pain but not enough to allow him to eat. So we are still entirely PEG tube fed.
We saw the consultant last Monday, she said that he needs to have blood test, and a contrast MRI of the neck ( he has also been complaining of neck pain) and CT scan of the mandible and once these are done she will do a biopsy, she said to rule out cancer due to his past history. So I asked her, if it isn't cancer then what could it be, she was rather non committed to saying what she thought it may be but did mention it could be a post radiotherapy ulcer.
We had the blood test on Tuesday and the scans on Friday and Saturday. Now waiting for appointment for the biopsy.
Now Im the type of person who needs to know and I know it's not advisable but I googled options of what it could be. I need to know what options it could be if it isn't the cancer which im trying to convince myself it isn't because he only had clear scans beginning of June and then GP saw it on 28th June and surely it couldn't grow that quick ?? and obviously I googled the recurrence rates and times and he only finished radiotherapy in March. Surely it's too soon for recurrence ???
Has anyone else had post radiotherapy ulcers this long after completing radiotherapy ??? It's such a devastating step backwards as we had got to the point that they were thinking of removing the PEG tube, he was eating, minimal pain etc and now its the worst it's ever been.
Sorry for the long post ... Any advice or experiences gratefully received... Thank you
(Also hope all what Ive put makes sense ! )
Hi Evo58
as you say “what’s done is done” but it’s good now that your partner is back in the care of his oncology team. You have to wait till the biopsy results are back which I know must be awful for both of you but really you don’t know till you know.
Waiting for results is the second worst torture when we are on the cancer roller coaster. The worst torture is second guessing through Google.
I wish I could reassure you with a personal experience but all I can do is give you both a hug and wish for the best.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Good evening Evo58, indeed what is done is done but i think its been handled the wrong way, in my opinion he should have been seen by his consultant at the nearest possible date other than pump him full of drugs. I had the same cancer as your husband which involved surgery and skin grafts with radi/chemo afterwards. Unfortunately for me, it returned a year later to a slightly different area. Looking on Google certainly does not help matters, all you can do is wait for all the results and tests,etc so they can get on top of it straight away. In most cases, they cure the cancer the first time, so let's hold onto that for now.I wish you both all the best and fingers crossed its nothing sinister, please feel free to contact us at any time, My last cancer was in 2010 and all is good now. Take care
Hugs, Chris
Its sometimes not easy but its worth it !
Fortunately after posting yesterday we got a call for the appointment for the biopsy, which is today. Fingers crossed don't have to wait too long for the results.
Fingers crossed for you
Im not an over catastrophiser (not a word, I know !)
It its here....a lot
Hugs
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
Thank you 
Thank you x
Yes I think that's a good idea
