In June of this year I woke up with a small lump on the bottom right of my neck. This, maybe 1cm lump did me a favour, we all get lumps, bumps, aches, pains and neuroses that could be something but generally never amount to anything. In this case I just didn’t feel right so I pushed for a meet with my GP. My surgery, thankfully, squeezed me in and my GP just took one look and said yeah, cancer pathway.
So we panic, right? Every useful and useless thought flies through your head. Within two days got to see an ENT specialist. They said ‘nothing suspicious, can’t be, cancer doesn’t grow that quickly.’
Wary but relieved, went home. Two days later it (lump) had doubled in size. Went back to my GP and they pushed and pulled and got me back in to see ENT. Same thing, can’t be cancer, doesn’t grow that quickly, but we’ll get an ultrasound and a biopsy. they still maintained, it’s probably a cyst, so don’t worry.
Ultrasound…….***, it’s not a cyst. Booked in for many scans whilst we wait for biopsy results. A CT and MRI later then a call from the ENG team, we need to do a PET scan. Didnt say why, but of course, by this stage we all have become experts at research on google, they only use PET to look for cancer, double ***.
Three days post PET scan ENT consultant called, this is ‘Primary Squamous Cell Carcinoma of the Thyroid’ (PSCCOT) - do what now!!! ‘And by the way we are going to operate next week’…..eeeeek.
One 9 hour operation later, woke up with many, many tubes including a tracheostomy. A week later, on the ward, surgeon who operated said we are going to treat this cancer like laryngeal cancer, even though the pathology shows PSCCOT, and we should probably think about removing the larynx……what?!?
This is where the, er fun, started.
Three more surgeons, two oncologists later and all of them have stated why would you treat your cancer in that way if it’s not all over your larynx?
They all agreed that because PSCCOT is so rare (and I quote) ‘one/two cases every three to four years’ there simply isn’t the data available to make that call, so why go launching straight for the larynx.
Honestly, alongside the physical changes required with a full laryngectomy the psychological impact of going backwards and forwards on this in the last few months have been horrible. Our sanity has been tested alongside the physical impact of the original operation.
I wonder, has anyone else been through something similar? Or in fact been diagnosed here with Primary Squamous cell carcinoma the thyroid?
thanks for reading and listening,
Ian
