Changed staging after PET scan

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Hi

i have previously posted about my journey so far and the last update i gave i had been waiting for a PET scan. MRI suggested no lymph node involvement 

I had an appointment with my consultant yesterday who then told me that PET has revealed it is in the para-ayotic lymph node and have now staged me at 3c

I just froze and my brain switched off, whilst he was talking all i heard was white noise. Not sure what all of this means and could do with a little info from someone who has been in this situation.

They have said that i need to be referred to another hospital for treatment and this could take 2-3 weeks for an initial  appointment so still have no details of treatment plan apart from it will be chemoradiation. Is my situation now more urgent? What does it mean if it has spread to the lymph nodes 

I have so much going through my mind at the moment as well as dealing with hospital/needle/vein phobias from past trauma. 

any support, advise or suggestions are welcomed as i feel backed into a corner and quite alone at the moment.

Thank you x 

  • Hi all

    just a quick update

    I have received my initial appointment to meet the team and sign consent forms (as my original diagnosis was at another hospital and the surgical team) this appointment isn’t until 7th Feb and then will have to wait for a planning meeting and then find out when the treatment Start date will be.

    I am feeling very anxious and frightened as now its spread to lymph nodes that its going to spread further and feel that all this waiting is increasing the chances of this. 

    I feel like i have been stuck in a nightmare since the original diagnosis back in November 

    Hope you are all well x 

  • Hi  

    I’m glad you’ve got your appointment set up but can appreciate you are worried about the wait. Unfortunately waiting is a big aspect of the whole diagnosis and treatment process and we’ve all experienced this. We all worry too that the cancer is going to spread like wildfire in the meantime, but typically that’s our minds working overtime and not the reality.

    I waited from my diagnosis in mid September until the end of the first week in November to start treatment for example, and that seems fairly typical. We all want things to move much faster of course. 

    The multidisciplinary team needs to meet to confirm your exact treatment plan. These are all the specialists involved in confirming your exact treatment-while it’s fairly similar for everyone, there may be individual tweaks as it’s tailored exactly for us each.

    You will need a planning scan, which is the Ct scan which enables tiny tattoos to be marked on your skin in preparation for the radiation to target the precise area where it’s required, and then you will get a schedule of all your appointments for treatment. 

    It seems an endless wait, I know, but they need to make sure everything is exactly correct before your treatment starts. It will be absolutely impossible not to be anxious while you do wait, it really is very hard. 

    Try and just hang in there, and please feel free to keep using the group when you need to. We understand£ what this is like. 

    Sarah xx


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  • Hi NicNak....It sounds like you are now going through the final stages before treatment begins.  Your cancer will not be spreading and as Sarah says, it is so important that they know exactly how and where to treat you.  I first saw my GP with symptoms in October 21 and didn't start treatment until January 22.  You are nearly there and will feel so much better when you have your plan in place and it won't be long now.  Good luck, and please keep us updated xxx

  • Just a quick update……

    Had appointment with new hospital team and consultant yesterday.

    Planning scan Monday (13th)
    Pre chemo assessment 27th Feb
    Start treatment 1st March
    5 chemo, 25 radiotherapy & 3 brachytherapy

    The planning scan is with contrast, is this normal?

    I am absolutely terrified of the brachytherapy and that will be done as a day patient so thats 3 lots of aesthetic (not sure what the time frames are for that either)

    Hope you are all well

    Nic x 

  • Hey NicNak, thanks for the update and wow!  Things are happening fast now aren't they.  I can't remember whether I had contrast for my planning scan but believe me they know what they are doing.   I would leave the brachytherapy where it is for now and concentrate on getting through the next weeks.  The brachytherapy sounds as if it's the same as mine, three separate trips but it really is nothing to be worried about and the staff are great.  They will babystep you all the way through the whole treatment process.  They are so lovely.  Please let us know how you are getting on and ask us anything you are unsure of.  We are all here to support you.  Good luck and well done! xxx

  • Hi All

    Hope you’re all well x

    I went last Tuesday (7th) to meet the team and signed paperwork. I was told i would hear something in around 10 days with dates but by the time i got home my phone had not stopped ringing! I had my planning scan Monday (13th) and was told my treatment had been brought forward by a few days, start date it 27th for radiotherapy and 1st Match is my first chemo.

    unfortunately they could get a vein for the contrast dye and it took around two to get one. They have said my right arm is useless as the damage to veins from pregnancy and my left side is very spidery and unpredictable. They said i will need a picc line for treatment. My anxiety is through the roof again

    I have left a message for the specialist nurse to call me and I'm waiting to speak to her. I had hoped that having a clear treatment plan with dates would focus me but with the way the planning appointment went i feel even worse than before 

    I just wished this was over xxx

  • Hi  

    Good to hear from you with an update. 

    Hopefully you will find that having a picc line in will make things much easier for you during treatment. I’ve not had major problems with my veins before but have just spent 9 days in hospital where it was an absolute ordeal every day trying to find veins for bloods and cannulas. My veins are now apparently very difficult to find. I was in a lot of pain with repeated attempts, and getting contrast dye for a scan, so anything that would make that easier should really be a bonus for you. 

    What has made you feel worse than before? Is it just the anxiety about getting a picc line in? Most of us find that getting a firm treatment plan is definitely helpful to focus on, so it’s sad that you don’t feel that has helped in calming you a little. Is it fear of the treatment itself, or anything else that we might be able to help with? 

    Hang in there, and take care of yourself. Not too long now until you can get started.

    Sarah xx


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  • Hi again NicNak.  When I was having my Chemo there were some ladies having picc line treatment and they didn't seem phased by it at all.  But I do know that if you don't have picc line treatment, the search for the vein can be very tough and I think they can only have so many attempts in one day.  I have good veins but still ended up black and blue one day when it took three attempts to find the vein.  So who knows which is the lesser of the two evils?  I can very much identify with your anxiety but whichever method is used surely it is worth it for the big picture.  Please try not to worry - the staff are so lovely you'll be fine and once treatment starts, although intense, it is soon over.  Good luck and keep us posted xxx

  • Hi everyone. I have just been diagnosed stage 3c1. Never been so scared and worried. I will be starting chemo and radiotherapy within next two weeks and I’m just so scared but reading what you said above has gave me a little tiny bit of hope. 

  • Hi  and welcome to the group

    You may want to make a new post in the group to introduce yourself as posts can get missed in a long thread like this and then not so many people will see them. 

    At the top right of the page there is a button “ +new”. If you click on that it will allow you to make a new post to tell us a little about how you got to this point. This thread is about staging changing after a scan, but it is equally possible that your stage was 3C from the start. 

    Several ladies as you’ve seen have been diagnosed at stage 3c and have successfully completed chemoradiation, and many of us at other stages have also been through this treatment so hopefully we will be able to pitch in and offer help and support for you as you go along. It’s natural to be scared of the unknown, but for now just try to take things one day at a time and try not to think too far ahead. 

    Sarah xx


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