hi everyone, i am a very concerned sister, just praying for someone to point us in the right direction.
Back in January, my brother in law was diagnosed with tonsil cancer and it was in his nodes and after much messing about with cancelled appointments etc, he started on a course of chemotherapy and radiotherapy, chemo was once a week and radio was daily.
He was fitted with a PEG feeding tube and started his journey, which was rough and harsh, he had the same symptoms that many on here seemed to have, dry mouth then excess saliva, loss of taste BUT it never stopped him trying to eat and he relied on milkshakes and soups.
He never used the PEG at all and a month after treatment ended they took it out, he had a camera look around and was told they could not see anything of concern in his throat or stomach. The following week he had a PET scan and after 2 weeks saw his consultant - consultant said there was no sign of cancer in or around his tonsil or throat but there was a glow on the pet scan that he was unsure of, he said he wouldnt elaborate any further but would arrange a further scan in 2 months to see if anything is active or any other reason to cause it, he added that such intensive radiotherapy can sometimes continue to work even after time.
BIL was shocked and has gone from positive feelings to being at the bottom of a pit.
please has anyone ever had this scenario before and can at least give a heads up as to what is occuring
many many thanks
please has anyone ever had this scenario before and can at least give a heads up as to what is occuring
Yes me. You can look at my blog where I describe my despair.
It’s actually not uncommon. RT does quite a bit of damage which takes a long time to repair and even my scan at 16 weeks showed a hotspot. My team decided to biopsy the area rather than re scan which for me was a blessing. It saved weeks of worry. Some trusts, like your brother in law’s, opt for repeating the scan.
99% of the time it is just residual inflammation
My oncologist told me that if he had his way he would put everybody’s PET back to six months for this very reason.
So, try not to worry. It’s likely residual RT.
Oh and welcome. I should have put that first.
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
Spider
If his consultant was really concerned your BIL would be seen sooner I’m sure.
A hotspot may be too small to biopsy if it was in his neck.
If you’re in England he might have access to his notes online. I suppose he could look there on his NHS app, he might have something to tackle his CNS with.
I wish consultants would be more forthcoming.
Whatever you do don’t Google. You don’t know what you are looking for and you’ll just frighten yourself.
Meanwhile all you can do is be vigilant for any new changes.
Dry mouth. A pocket water spray is good for frequent relief as us sugar free chewing gum. I swore by that in the early days. I also had a crack at acupuncture specifically for xerostomia and that seemed to kick start everything.
Has he tried xylimelts at night? They are a xylitol lozenge that stick to the gum slowly releasing through the night. Five years on I still use one.
Best of luck.
Keep in touch and let us know how he gets on xx
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
