Just diagnosed 3C1

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I’m 35 and just been diagnosed with 3C1 cervical cancer - 7cm tumour which has spread to lower part of the uterus, parametrium and pelvic lymph nodes.

Feels very strange to be writing about it in the open like this, as I’ve always been a very private person and deal with things on my own - but I’m hoping that other ladies who are/have been on this same path can provide me with info/support to help me on this journey I’d rather not find myself on!

Sometimes I think it’s easier to open up to strangers who have no emotional connect to you, than to family who are (understandably) emotionally involved.

Particularly as I’ve always been the strong one.

I lost my husband nearly 10 years ago and have a 12 year old daughter - she’s my motivation to get through this as her sole sieving parent!

Treatment will be radical chemoradiation

Have to have PET-CT next week and then will meet consultant oncologist - until now I’ve been seeing a gynae oncologist, but as surgery isn’t the best way forward I won’t see him again.

I tend to compartmentalise things (coping mechanism I’m sure) so haven’t cried or been upset (yet!) have just tried to absorb as much information as possible at this stage. I’m sure that will change, and they’ll be emotional days ahead. I don’t underestimate how challenging the treatment will be. One thing I’m particularly dreading is if I lose my hair. Does this normally happen with the chemo they use for CC?

Anyway, thank you in advance for any advice!

  • P.s. apologies for typos! Just re-read it and there’s loads! 

  • Hi   and welcome to our group.

    I’m sorry to read of your diagnosis, and understand it’s a lot to take on board. It’s especially challenging not to have the support of your husband going through this, but I agree it can sometimes be easier to open up to strangers who have no emotional connection to you but who can understand what you are going through and have been there, done that! 

    Once you have some spread, as you have indicated is the case for you, surgery is not possible so the standard treatment is chemoradiation and many of us have successful come through that.

    Hair loss will depend on the type of chemo used. Typically it is Cisplatin, which doesn’t cause hair loss, but other types which can be used for some ladies does cause hair loss, so it will depend on the specific chemotherapy which will be used for you. I had Cisplatin for my first line treatment of stage 2b cervical cancer so didn’t lose any hair.

    Treatment is pretty intense but over a relatively short period of time, and how it affects you is different for everyone. Some ladies sail through with no side effects, some of us have some side effects, but I don’t think I’ve ever seen anyone have every potential side effect which they have to warn you about so you can give informed consent to the treatment. It can look scary to see the potential side effects listed, but it’s best not to assume in advance you will have them. We are all unique and react differently to treatment.

    The main thing to note is that if you experience any side effects you let your treating team know, and they will be able to help. For example I suffered with cystitis bad diarrhoea from about 3 weeks into radiotherapy treatment-this can be very common with pelvic radiotherapy. I was given immodium and tried several different potions to help with the cystitis. The side effects for me disappeared very soon after treatment ended. 

    The main thing for me was fatigue, and I was exhausted by the end of it. I’d advise just taking a day at a time, and resting when you can. Have you got some good support around from family  and friends to help with lifts to  treatment etc? That might be very helpful if you find yourself feeling tired or unwell, but lots of ladies do manage to drive themselves to appointments. 

    If you have any questions at all, please feel free to ask away. There’s a lot to absorb at the start of this process, so ladies in the group will be happy to help with anything they can, based on their experiences. You are very welcome to be with us and I hope you’ll find it informative and supportive as you go through your treatment.

    Sarah xx

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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Sarah

    Thank you so much for replying, I honestly really appreciate it.

    I’ve been reading other posts in the forum and can see how much help and support you give to others.

    Having read your profile, I just wanted to say you’re truly inspirational and I hope I can channel some of that strength in the months ahead.

    It’ll be good to get the PET scan done and meet with the oncologist so I can find out exactly which chemo drug they’ll use etc and then be able to mentally prepare for it.

    With anything, it’s always good to know you’re not alone and despite having an amazingly close family & friends who I know will be there for me and help with logistics etc I imagine it’ll also be super helpful having this community who can understand what I’ll be going through.

    Thank you again x

  • Hi  

    I love your username by the way! I think you will find the strength to get through-we find it from somewhere even when we don’t realise we have it. 

    Once you’ve got the PET scan done and met with your oncologist, treatment should hopefully start soon after and then you find your focus to get this done. I found the hardest part to be waiting around for results, and then waiting for treatment to get going. I didn’t cry when I got my diagnosis, or get upset..I think I’m a fairly pragmatic person so it was just a challenge to be met, like all the others I faced afterwards! 

    I didn’t have very much support except for my partner and a close friend when I was first diagnosed and came to this community much later. With everything I’ve experienced and gone through, I hoped to be able to support others so that they didn’t feel alone, because having cancer can be a very lonely place to be.

    Having a positive mindset can really help, though it can be hard at times! I broke things down into chunks-the next day, the next treatment, the next appointment, and tried not to look too far ahead and let my mind run away with itself.  Focusing in the moment was a good strategy for me-I prefer to deal with one thing at a time to be able to cope better. 

    I’m going to tag a couple of other ladies who have successfully come through Stage 3c treatment and hope they'll pop in to say hello!   

    Keep posting in the group whenever you like and with any questions, or just to let us know how things are going. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much Sarah!

    Oh definitely, it’s the wait that I find the most frustrating - the unknown!

    Ironically I hadn’t been sleeping well last week, whilst waiting for scan results, but last night after the staging confirmation - despite it not being what I’d hoped for - I actually slept like a baby!

    Probably because at least now I know what I’m dealing with.

    Thank you for your words of wisdom, I too am a pragmatist and aim to tackle this one step at a time.

    Hope you have a lovely rest of the weekend x

  • They say knowledge is power! I think it helps us to know what the staging is, regardless of the number. I’m not one to focus on a number as the focus should be getting through treatment and I’ve seen such huge variations in responses, regardless of a stage number. But we need to know what we’re dealing with. 

    I think you sound as if you have the right attitude to tackle this, and that’s going to serve you well.

    Been a busy day in our house today with various unpleasant tasks to be completed including the fireplace cleaning ( I love having a proper fireplace but not the stuff that falls down the chimney!), so I’m freshly showered and we are treating ourselves to a small drink to say “job well done”! 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Enjoy that well deserved drink! X

  • It was very nice thank you! Joy

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Aquabambi and welcome but sorry you find yourself here.  I am 20 months post treatment for 3C1 and so far so good.  I was exactly the same at diagnosis - I felt so much more able to cope when I knew what I was dealing with and especially when the treatment plan was in place.  I didn't lose my hair and I had the Cisplatin chemo.   As Sarah has said the treatment is perfectly do-able and the medical team will help with any issues you may have.  Please let us know how you get on and try to do everything in your power to help your body.  Sarah is the font of all knowledge so you are definitely in the right place and we will help you any way we can, even if you just need a good old rant!  xx

  • Hi Snobird

    Thank you so much for replying, and such great news that 20 months on you’re doing well :-) so pleased to hear that!

    And also thank you for sharing your experience with Cisplatin. I don’t yet know my exact treatment plan (other than it’ll be chemoradiation) but that’s one thing I’m hoping for, is not to lose my hair (sounds daft I know, when there’s so much going on!) but I have lovely thick long hair and it’s always been my “thing”!

    You guys are all amazing, taking the time to reply on here even after you’ve finished treatment - a huge thank you to you and Sarah in advance!! 

    Hope you have a fab weekend. I’m off to play mums taxi to my daughter today, trying to keep things as normal as possible.