Good morning
firstly some good news I have heard about my pet scan and its tomorrow, bit of a mixed bag of emotions as happy to be getting answers soon but equally terrified of the procedure and the answers it brings!
also have got myself into a tizz as my consultant has not called with my biopsy results. They were taken last Monday and made urgent. She said she is sure it's cancer so isn't waiting to get the tests but equally said she would phone with the results. I am now stressing as she hasn't called and am thinking all sorts of sinister reasons why she hasn't been in touch, help!!
finally ive noticed a wee hard bit in my groin which I have convinced myself is a node, did anyone else have this stress, also are nodes treatable? I know u had node involvemeant Rachel just am not sure how that effects Things. I know I'm flying massively ahead of myself I suppose in absence of hearing anything my worrisome mind has gone into overdrive.
Kimmy
Kimmy,
Firstly, PET scan is fine you'll not feel a thing. They inject you with a radioactive glucose solution, the cancer will absorb the glucose and the radioactiveness makes it glow. Once injected you have to lie around and do nothing for an hour to allow this process to take place. Muscles absorb the glucose too so no reading etc. Have a wee sleep, i did!!!
In regards to the biopsy. It is possible they are not back yet. Urgent in the world of the NHS is 2 weeks, although mine were much quicker than that. You could always call this afternoon and see if they are back. Be prepared for them not to want to tell you over the phone though.
In relation to the possibility of node involvement. I do indeed have a couple of pesky little critters. Yes, they are treatable. My treatment is largely exactly the same as those without node involvement except they are going to give some boost radiotherapy to the nodes at the end. I also think that because they have slotted my brachytherapy in once a week (weeks 4,5&6) they are planning a total of 7 chemo so the radiotherapy is always getting that boost.
Try not to get yourself in a complete tizz again. Enjoy the sunshine and take each day as it comes. We can't change whats happening right now but we can make it the best experience possible in such circumstances.
Rach xxx
Cheers Rachel
i know I'm just working myself up and upsetting myself and I need to just reign in the wild thinking a bit. I think this process is a nightmare if you are a control freak like me as like you say I can't change anything!
i just wish I would stop dreaming up hospital conspiracies etc!
Thanks for for replying im off to bake in the sun and try and chill out a bit!
one wee question its prob random but at the pet scan I assume u don't seE yourself glowing or anything??
Kimmy
Hi Kimmy
Hope pet scan goes ok, I know exactly what you mean by mixed emotions. I was almost excited to get my date through, like they were telling me that I had won a holiday lol but 10 mins later I was feeling anxious again. I am a control freak as well I think ans it's difficult to relax but try if you can.
Try and call them for results maybe. Big hugs again and remember we are all here for you. xxx
No you absolutely don't see yourself glowing. Just makes the nasty cells show up better on the images obtained.
Enjoy the sunshine but don't forget the sunscreen!!
Xxx
Hi Rachel and Sarah
things have moved along today so feeling much better. The consultant called today with my biopsy results. I have moderately differentiated squamous cell, which I'm surprised with as that's the one normally picked up in the smears so bit worried about that but the lady did say it makes treatment options more straight forward.
i also have my MRI tomorrow as well. There is a MDT meeting every wed so I'm hoping I'll get discussed next week and then know what I'm dealing with.
How do they normally let u know the MDT outcome and how soon is it??
i just want to say thank you to everyone who has taken the time to be nice and put my mind at rest re numerous concerns, including glowing during the pet scan!!
Kimmy
Should I have had a PET scan?!
Glad things are starting to move forward for you Kimmy, biopsies do take a while unfortunately. Hopefully you'll have news soon X
Thanks sweet pea how are u getting on? How quickly did u get the outcome of ur MDT ??
Kimmy
They had the meeting in the morning and I was called about 1:30ish by my cns xx
Hi Sweet pea,
It seems that NHS areas differ greatly in terms of what scans are offered and how soon you get your results. Of course I am not in a NHS region at all (and may even be outside of Europe after Sunday) but the point is this. I have never had a PET scan and whilst they are extremely good and the new best-thing-ever, that does not mean that doctors cannot make an accurate diagnosis / staging without them.
Be lucky :-)
Tivoli
My consultant called me as my cns nurse wasn't able to call me until the following day and he said he would call me as I seemed very anxious apparently.
You could ask your consultany to ring you, when is the meeting Kimmy?
Hope you are ok xxxxx
Sorry you already said next Wednesday xxx praying for peace for you in the meantime
Hi Sarah
im doing a bit better now. It's prob a rubbush analogy but it's like an exam I've sat it now and no matter how I will the results to be good and sooner they will b what they are regardless if I put myself through hell or not!!
i was wanting some advice I don't know to call or not. My fear is either they don't tell me then I fear the worst and agonise until they see me in person or it's a stage four and if rather I got told in person as it would be alone with the treatmdnt options. I'm so confused I really want to know what I'm terrified so not sure to ask when they call me, assuming that's what they do.
ah help anyone!!!
Kimmy
Aw Kimmy, I wish I could help but I find it the same, panicking over news and meetings. Just to say we are with you and fingers crossed.
Thanks Mitch
its the weirdest feeling I want to know what I'm facing but I'm terrified of what they are going to say. Everyone here has helped though.
kimmy
Kimmy,
I would say call but that's my personality I kept ringing all the time chasing my lletz results, as for me I would rather know than wait.
Big hugs Hun it is like an exam isn't it.
praying for you xxx
Hi Kimmy,
I'd be really stunned to hear if they'd ever tell anybody they'd got a stage 4 over the phone. I'd be almost equally stunned to hear you'd got a stage 4. I'm pretty patient and passive and therefore expect that in your shoes I'd be waiting for them to call me, but that's just me.
Be lucky :-)
Tivoli
