Posted By: Mandy scared - 05-23-2014 10:37 AM
hi just an update on my situation,have just finished 6 weeks of radiation on my neck because of spread to lymphnodes,4 out of 27 had cancer present,1 node had more than the other 3,they only had 1 cell in each,my original surgery for buccal mucosa was nov 2013 it turned up in nodes only 8 weeks later,had a selective neck dissection,cant have my first scan until end of june,i am so frightened that it has spread to other parts of my body,i had all clear margins from first surgery and ct and mri showed noe node involvement ,for it to reappear only 8 weeks later is scarey,forgot to say it was stage 2 until it spread to nodes,now I think it is stage 4
Posted By: davidcpa Re: scared - 05-23-2014 12:31 PM
First off CONGRATS for completing the radiation. I know how tough that is smile. Next, calm down, waaay down as it really does not do you any good to worry about things you can't control. The job of the nodal system is to do exactly what they did, filter out the cancer cells and stop them from spreading and in most cases that's what's happened. Your cancer had probably already spread to the nodes before the surgery and was just not detected or undetectible initially. The radiation is designed to kill this cancer and in most cases it does so calm down and I'm sure they will scan you in a few months to make sure it's all gone.
Posted By: Mandy Re: scared - 05-24-2014 12:06 AM
thankyou for your kind words,all this is just so scarey and sudden
Posted By: davidcpa Re: scared - 05-24-2014 01:29 PM
Yeah I know but leave that to us, you just think positive thoughts.
Posted By: Cheryld Re: scared - 05-24-2014 03:27 PM
Hi there the numbers are scary - but remember you are not alone and a lot of us are a few years out and doing ok. Chances are that the cancer was in the nodes before your original surgery. Often this cancer seeds to the nodes but sits dormant until the primary is removed then they become active, so your story is more common than unusual. Most ENTs remove a selective grouping of nodes when they are removing the primary tumor - this is preventative with this type of cancer. (Non HPV) but that is up to the discretion and experience of the ENT.
Bottom line is you are done, you got through radiation and chemo, and now you are healing - try to focus on that. Your scan will come soon enough and I know when faced with this we all want assurances and definitives but sadly this is one of the mental games the C word plays with you. It really just reinforces the reality all of us live by - there are no guarantees in life. Tr to put the fear aside - acknowledge it then ask yourself have I done all I can do at this point to fight this? (You did treatment - you followed your drs advice) if the answer is yes then focus on healing and living your life. Everyday people leave their home intending to return that evening and don't make it back - car accident? Shooting? All we have is now - so don't let the cancer steal your joy and live your life. Give it it's due attention - take your meds - see your drs. Go for scans but then do what you can to move on. Hugs...
Posted By: Mandy Re: scared - 06-25-2014 10:17 AM
my first scan is tomorrow after finishing radiation 8 weeks ago,i have convinced myself that the cancer has spread because I have upper back ache,i am terrified and no amount of reassurance is helping,i am snapping at everyone,crying for silly reasons,i hate what this has done to me and my life
Posted By: Cheryld Re: scared - 06-25-2014 01:06 PM
Hugs - everyone gets stressed at scan time...
Posted By: OzMojo Re: scared - 06-25-2014 02:33 PM
Hugs and prayers for you and your family. Let us know how you go Aussie girl, we'll be here.
Posted By: Gabe Re: scared - 06-26-2014 12:08 AM
Best wishes for your scan today Mandy.
I know you are stressed and hope you do not need to wait too long for the result.
Gabriele (Sydney)
Posted By: msmac Re: scared - 06-26-2014 02:29 AM
Hang in there, Mandy. Waiting for scan results is the worst. I hope your doctors get back to you quickly and ease your worries.
Posted By: Mandy Re: scared - 06-26-2014 09:32 AM
scan finished,,,no evidence of disease,i need a PET scan in 3 months
Posted By: tamvonk Re: scared - 06-26-2014 02:47 PM
Great news. Relax and live a bit now.
Tammy
Posted By: Gabe Re: scared - 06-26-2014 10:21 PM
Great news on the NED result on your scan.
Time to breathe and smell the roses a little.
Gabriele
Posted By: OzMojo Re: scared - 06-27-2014 03:49 AM
Great news Mandy, good job! smile
Posted By: PaulB Re: scared - 06-27-2014 04:18 AM
Congratulations!
Posted By: Cheryld Re: scared - 06-27-2014 08:50 PM
Yeah!!!!
Posted By: davidcpa Re: scared - 06-30-2014 12:29 PM
It took me 3 post Tx scans to finally get NED so congrats.
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