Newly diagnosed

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Hi all,

Heres me and my background…

On Thursday I was diagnosed with cervical cancer stage 1A after under a lletz procedure on the 9th January for severe CIN3.

I got the call  2 1/2 weeks later and a different consultant to who I’ve been seeing explained that they had found more than just the CIN3 despite my consultant being very positive in that all of his career it didn’t look like it would be cancer,I also had an ectropion cervix which he thought along from my first punch biopsy the week before my lletz was all I that was wrong with me.

All of my previous smears have been clear and was due my latest in January 2024 but due to bleeding after intercourse/between periods etc I got checked out in August 2023 and had an internal scan in October in which that made me bleed and was told I had a small fibroid and then referred back to gp.November 2023 I had to chase up where my gynae appointment was as I hadn’t heard anything.Ive also been having lower back pain for the last 2 years but put this down to my job as a gardener and cleaner.

So all I know now is that I have to have another lletz procedure and a hysterectomy.My case will be talked about with mdt in the next 2 weeks along with having an mri and ct scan.I was told a cancer support worker would ring me Friday,the day after diagnosis but that call never came so left now feeling alone with my diagnosis.

I am 46,live in West Sussex on the coast.My children are 22,20,18 and 10 with only my 2 youngest living at home.My partner doesn’t live with me.

  • Hi  and welcome to our group.

    Gosh you’ve certainly had a lot of going back and fore before this was found, but the good thing is it has been and it’s at an early stage. It’s horrible to have any sort of cancer diagnosis, but you’ll be glad you got things checked out last year so it’s been caught in time to have surgery. 

    It may be that a further LLETZ could remove the cancer as it’s very small, but if you also have a hysterectomy, there are a number of ladies in the group who’ve had this surgery and will hopefully come along and say hello.

    It’s unfortunate you didn’t get a call back-do you know if that should have come from your cancer nurse specialist? Normally you are assigned a named nurse on diagnosis and you should have been given a number for them. If so, I’d give them a call on Monday-they typically work normal working hours. It’s not a very good start to the process for you not to have had an introductory call though. 

    It’s standard process for the scans to be done and then the results to go along with your other tests to the mdt, just to confirm that the plan of action won’t change, and will be as you have been advised. Hopefully everything will come back as expected and you’ll move forward with your surgery.

    It’s hard to be going through this on your own-have you got some good friends around for support? Please feel free to post and ask questions in the group and we will be here to help you through, for advice from our own experiences or just a handhold if you need it! You are very welcome to be with us and I hope you’ll find it supportive and helpful.

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Thank you Sarah,no I wasn’t given a nurses name or number either.This is why I’ve taken it upon myself to try and find some support as the groups I found on Facebook aren’t that great for replies or ladies are elsewhere rather than UK.

    I don’t really have much support where I live as I moved away from my Mum and sister 6 years ago so they are in the midlands and I’m in the south coast.I do have a partner but he doesn’t live with me or drive.My oldest 2 daughters don’t live with me either and don’t drive.I have an Aunty and Uncle 35 mins away and literally one friend who also lives 25 mins away so it’s pretty lonely.

    Im happy to have the hysterectomy but just worry about aftercare as I have no one to help with school runs for my 10 yr old and I have a 4 1/2 month old puppy too x

  • Sorry to take so long to reply but I’m away on holiday and was out with no internet! 

    You really are having a tough time of it..I’m so sorry you’re so much on your own with all this. It’s very difficult not to have a partner with you or family near by. I was very lucky to have my partner, though there were just the 2 of us. 

    You can phone your consultant’s secretary and ask for details of the cancer nurse specialist who will be your named nurse/key worker- the secretary should be able to provide details for you. Sometimes you have to leave a message as they are involved in clinics during the day, but this should prompt her to phone you back. Usually they are really good-for advice and reassurance, and keeping you posted about appointments and results. Mine phoned me weekly as I was going through my first lot of treatment. 

    She might also be able to give you advice about other support available when you explain your situation and that you will be on your own with your children. Typically, the stay in hospital is short for a hysterectomy-a couple of days-but you will need to take things very easy when you come home and that is going to be difficult. 

    You will not be able to drive or lift things for a while, or be able to walk the dog initially in case he/she pulls on the lead. You’ll have internal healing to do and it’s important that you give yourself the time you need to recover. 

    I’d also recommend giving the support line a call-the number is in my signature. They are lovely on there, and so helpful. They may be able to suggest resources for help for you and are also a good listening ear when you’re worried. You can also get all sorts of practical advice on finances, work and benefits from their advisers if that is something you would need. I’ve used them myself, and they are they to help with all the things we are worried about.

    Please keep talking here in the group too-I’m normally around much more often than today and will look for any posts. I’m happy to chat with you-I’ve been through surgery, including an attempt at a hysterectomy, so I do understand what it’s like. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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