Hi everyone,
I’m new to this group but not new to the Macmillan support. In 2019 I was diagnosed and treated for Hodgkin’s Lymphoma. I had a large mass in my chest and some enlarged lymph nodes. One on my neck also so was classified as stage 2. I had chemo and was in remission in October 2019. I was gradually recovering from treatment however in June 2020 started getting short of breath and coughing, and then many other symptoms came. I was convinced it was the HL returning but a PET scan in November 2020 was clear.
My health has continued to decline, my ESR and CRP levels are high and I have had a daily low grade fever for the last year, sometimes by the end of the day it will each as high as 38.2. No tests were coming up with anything and my haematologist did another PET scan 3 weeks ago for “peace of mind” however, whilst he says my chest area is clear the scan showed uptake in my tonsils and larynx.
When I had a mid chemo PET in 2019, I had uptake showing in my throat then, however, at the time I had a throat infection and my throat felt like razor blades, so the consultant said the uptake was just the infection showing up. However, this most recent PET I didn’t have any pain in my throat at all. The last few days my throat has gotten a bit sore, and in the last year or so I do get a sore throat from time to time, usually I’ve associated this to when I’ve been coughing quite a bit or in my sleep I grind my teeth and have been known to get ulcers at the back of my tongue where I’ve chewed in the night, then my throat gets sore for a while also.
My consultant phoned me to tell me the results and said he was referring me to ENT but it’s nothing to worry about. However, I’ve just seen my copy of the letter he’s written to ENT saying URGENT REFERRAL and requesting the consultant to urgently review my PET scan images and whether an internal exam should be done. Now I’m getting worried. Does anyone have any words of advice please? Does anything I’ve mentioned sound like any sort of throat cancer? Has anyone had uptake in the throat for a PET when they’ve not had a sore throat but it turns out just to be an infection and no cancer?
Thanks
Kairen x
Hi Kairen and welcome to our little community
Anybody with a history of any cancer has to be followed up urgently. It’s something we all live with but the urgent referral is to by pass a non urgent wait of months. So it’s horrid and you know all about waiting buts it’s what has to be done.
By way of consolation I had an avid PET/CT after treatment but the biopsy revealed no malignancy so hold that thought.
I hope it goes well for you
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Kairen, there are no sure signs that indicate throat cancer, i have had scans that showed that there were no issues just scar tissue and infections or something swollen. Once you have been treated for cancer you will always be an urgent referral due to your history its happened to me quite a few times. Nobody can say at the moment if it's cancer so try not to worry just yet and see what the scan shows up. Its great that they are checking you out and normally if the consultant says nothing to worry about, it's a good sign. Fingers crossed it all works out ok. Best wishes,take care.
Chris x
Its sometimes not easy but its worth it !
