My Darn Tonsils!!
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5 posts since
4 Jun 2020
I have been suffering with an enlarged tonsil on the left side of my my mouth for 6 months. Which hasn’t responded to anti biotics. Along with this I’ve had fevers.
this month was the first month though that I couldn’t breathe in my sleep and I kept waking up. I had to eat soup for days because swallowing was difficult.
instead of anti biotics this time, my doctor referred me urgently the same day to ANE as he thought I may have “Quinsey…”
i arrived at ANE and waitied to be seen by ENT. They were very concerned. The asked me some lifestyle questions.” He had one lookin my mouth and told me it wasn’t Quinsey. And sent his assistant to fetch a camera.
after trying desperately not to swallow the lens from the camera that had invaded my nasal passage and my throat, he then proclaimed we need to send you for an MRI.
did he see something there that shouldn’t be?
why the sudden rush?
I had a phone call then whilst I was still at the hospital from MRI bookings to have an MRI the next morning. In which I was then admitted. But I refused to stay and asked to come back the next day. Which I did.
before I left, I asked the ent nurses assistant why I need an MRI and there she said it clear as it day. CANCER!
she didn’t actually say I have cancer. But that’s the only word I kept hearing over and over again. She said they want to rule out cancer. Well stop me if wrong….but usually cancer is the last thing that gets looked for….in my experience.
and then again I’m thinking did he see something on the camera? If nothing was there then why an MRI?
ive has loads of MRI scans before as I used to suffer tremendously with lower back pain, but this time was different. This time I had to to have contrast dye administered through a canular in my arm. Did they need the contrast dye to see whatever they saw in my throat clearer?
all too many questions. I’m still waiting for the doctor to publish his report on my scans. But I’m so worried. For my wife and my kids, I’m holding it together, I’m happy I’m smiling, I’m loving, on the outside. inside I’m a mess. Why did they have to mention the C word? For the last 6 months I thought I just had recurring tonsillitis. Ive gone from not knowin you could get tonsil cancer to staying up late research after research and knowing everything there is to know.
I guess my experience is like many others, albeit I do not have a diagnosis. But I’m sure they must be people on here that are in the same boat as me waiting for results? Or even anyone on here that had a similar experience?
I did call to chase up my scan results, the doctor I spoke to said the resulting image is here, but we’re not allowed to say anything. Same thing from the radiographers. Like it would be so helpful to put someone’s mind at rest if they just tell the truth.
How did you cope between scan/biopsy to getting a diagnosis? It’s probably the fact I haven’t stepped foot outside these four walls for 14 weeks.
13 posts since
3 Jun 2020
Hi there Kiernan
I can empathise with you on this one, I noticed one huge tonsil on my left side last October and then a swollen lymhnode on the right side a few weeks later. I saw two ENT’s and neither of them were that worried or concerned and this might be because I am only 27 but said they would removed the tonsil anwyays to be 100% sure (still waiting for surgery) and I just had an ultrasound on the lump yesterday (sonographer seemed a bit concerned about this but I will wait for report to see what happens next)
I think your ENT is taking the right approach, they would have mentioned the C word because I think the approach they take is ‘it’s cancer until proven otherwise’ they might not think it is actually cancer at all, but they need to treat it as so, so that they can carry out all the necessary tests to rule it out! And I’m pretty sure you’ve seen in your research that tonsillar cancer is rare and even when it does occur it’s reoccurrence is very slim.
I don’t know if any of what I’m saying is helpful but just know that you aren’t alone, I’m going through the same crappy time of in between tests and not knowing where I stand. We can vent to eachother here, try to stay of Dr google if you can!
let me know how you get on.
all the best
Patrick
5 posts since
4 Jun 2020
Hello patrick,
im very sorry to hear you are in the same boat. I’m am however glad to hear a reply, even if nobody replied I’m thankful just to get my words written down.
thebhardest part is not being able to talk to anybody. I don’t want to talk to my family because I don’t want to worry them.
i can’t talk to my friends because if turns out it’s not the big C then I’m afraid of looking like a tit.
its nice to know we have each other in our thoughts.
I have seen a few people mention that the ENT will treat it as cancer until lproven otherwise.
i have the HPV infection too, which only adds to my paranoia.
the ent doc did say inevitably the tonsils will be removed but only after tests. It’s just the not knowing that is killing me. My father died of cancer, my Nan died of cancer, my grandfather is currently battling cancer and so is my father in law….. there seems to be a lot of it going round.
I too wish you the best of luck, and I will come back here to post any such updates from the hospital.
thank you Patrick,
kevin
13 posts since
3 Jun 2020
Hi Kevin
Yes the hardest part is not being able to talk about it to family and friends, I almost feel if you mention it to them it’s a bit too real or something.
i am so sorry to hear there has been so much cancer in your family, it is frightening that half of us will probably have it some time in our lifetime.
can I ask how did you find out you had HPV? I remember asking at an STI screening if they tested for it and she said no that there isn’t a screening for it. I have heard that HPV related cancers respond very well to treatment though.
at least you you are getting all these tests done really quickly! For me it’s been a drawn out process since October, I think because I am in my 20’s they assume it won’t be cancer but of course it still does happen.
You are in my thoughts anyways and I hope all goes wel for you. Try to keep strong for your kids and family
Patrick
5 posts since
4 Jun 2020
Hey, I’m only 32 myself. My HPV “diagnosis” was from my GP years ago relating to warts on my knuckles.
i cannot ever remember having any tests though….
i think the fact I went down on a same day referral has sped things up a bit. Had I left hospital , then tried to arrange an MRI they would have put it on the back burner, same with the had the GP just sent me off for a routine referral it would have taken months just like you.
maybe I’m kinda lucky that the GP suspected it was something else (a pus filled lump) to get me seen quicker.
hopefully my luck continues and I can share some with you
13 posts since
3 Jun 2020
Hi Kevin
I was led to believe that the strain of HPV that causes the warts was different to the strains linked to cancer, maybe I am wrong!
Yes I think the same day referral was the winner for you, when I had the ultrasound yesterday he said we would do the report up that evening, so he must have been concerned but then again the radiographers always have such a poker face. I think they are limited in what they can tell you.
Do you have any other symptoms like night sweats or fatigue?
Best wishes
Patrick
5 posts since
4 Jun 2020
I always find it funny that the radiographers “just operate the machinery” nothing else’s…. I’m sure they know if you have or you haven’t. It baffles me why they don’t learn the ropes of what’s what and have a consultation with you right there and then.
I wasn’t aware of the HPV being different so I’m going to research into that, thank you.
I have very very extreme fatigue. Since November. Sometimes I would come home form work around 6 and simply crash out and not wake up again until the next morning…and still be tired.
but I can’t be sure if that’s a symptom or simply working to hard at work, and then renovating my house on the weekends and having no downtime.
eorher way it’s definitely unusual for me to be this fatigued. I’ve finished the renovation works in April and had a newborn baby boy that same month too, so everything is up in the air regarding sleep patterns so it’s difficult to judge.
i also have night sweats and fevers probably only one week a month
5 posts since
4 Jun 2020
Hello @NallyP I hope you are well.
my MRI report came back to day and the doctor has referred me for an ultrasound scan.
didnt tel me anything about the MRI
which is annoying … was there something there that they need to see on a ultrasound close up?
or was there nothing there and they want to double confirm this with an ultrasound?
the waiting game!
13 posts since
3 Jun 2020
Hi Kevin
Sorry I had been meaning to reply to you!
I am not too sure why they have referred you for an ultrasound now, it’s the opposite to me as I’ve only had the ultrasound so far??
is the MRI where they put you into the big scanner tube? I would have thought that would give higher quality images, unless as you said they saw something and need a closer look with an ultrasound.
do you know is it your neck they want to do the ultrasound on?
13 posts since
3 Jun 2020
Hi Kevin
how are you doing? Do you have any update so far?
i have my ultrasound results Friday so I’ll pop on and let you know what is happening.
all the best
Patrick
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