Hi I’m new here and feeling very anxious. My husband was diagnosed with a SCC on his tongue in May 2022. Not HPV positive. At the time it was very small, they operated and thought they had good margins so did not require further treatment.
However, in nov/Dec that year he could feel an enlargement in one of his lymph nodes. Biopsy was positive so had a partial neck dissection Jan 2023. When they went in there was also a small patch on his jaw which they removed. He then had radiotherapy and 6 rounds of cisplastin in March April 2023.
Was doing well until around Dec 2023 when he started to get pain again. Has had multiple scans/biopsies and it has come back at the base of his tongue. It’s very deep and near blood vessels so can’t operate at the moment. He’s due to start more cisplastin, plus 5 FU and cetuximab on 14th.
I suppose I’m wondering if anyone else has had a similar experience and can throw me some positivity. We’re only in our early 40s, never smoked and only drink normal amounts. We have 2 young children and our eldest son passed away at 6yrs old almost 5 years ago from aplastic anaemia so things have been really hard for a long time. I feel like I’m living in a nightmare that I can’t wake up from and just feel so terrified about what the future holds for us.
Thank you for listening.
Hi KiKat. So sorry things have turned out this way. What sort of prognosis has your oncologist given? They will be bluntly honest.
There are a few members here receiving similar chemotherapy so hopefully they will pop on with some advice.
Have you explored immunotherapy with the team? That’s another treatment that might be possible.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Depending on how things go I’m going to see if they will let me give the cetuximab in the longer term as I’m a nurse and so very used to giving IV drugs.
It’s given as an iv infusion and they have to check his haematocrit and do KFT and LFT before each one so maybe that won’t be possible but it’s good that they have suggested you can take a break.
Hugs
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
