Stage 2B question

I was just after a bit of advice really. My story has been clear smears for the last 13 years, most recent clear one was January 23. I found out I’d got stage 2B squamous cell CC after investigating post coital bleeding last month. Big shock.
At my smear the nurse saw what she thought was erosion, but as I was HPV negative my sample obviously didn’t get looked at any further. I’d say this bleeding had started 8 months ago.
So at my first meeting with my consultant I asked the question, how long would it have taken this cancer to develop? The reply… well as you’d had a negative result from your smear maybe 2-3 months. :flushed: this can’t be right? Everything I’ve read points to this being a slow growing cancer. The nurse saw it at my smear! It’s 4cm now. Well it was back last month when I had an MRI. Is it going to be a couple of extra cm before any treatment starts? I’m shocked that the consultant thinks it’s appeared that fast?

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Hi Leigh

Before HPV primry screening (which started around 2019), anyone who was up to date with their smear tests and who went on to develop cervical cancer would have an audit done by the lab to check if abnormal cells had been missed. I’m not sure how that works for HPV negative samples but I suggest it’s worth finding out. Maybe your pre 2019 samples can at least be audited?

x

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Thanks for replying. There is going to be an audit from the last ten years, which would make sense, but it was just the consultants comments that this had been a recent in the last few months thing. I thought ‘you’re joking right?’ This comment and the fact I’m bleeding daily now from just occasional bleeds before my biopsies has really scared me x

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I’ve always understood that cc is slow growing so I would also question what your consultant said. Might be worth ‘asking the expert’ on this website:

https://www.jostrust.org.uk/get-support/ask-expert

x

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Hi @leigh.

Sorry to hear what you are going through. Sounds like you’ve done all the right things and pushing for answers and you have been let down through the process.

Do you know when you will find out the results of the audit?

When do you start your treatment?
Wishing you all the best with it.

I’m currently pushing for answers for my post coital spotting that I’ve noticed for past 8 months. I have a history of CIN 3 and CGIN and can’t seem to get answers and I know it is not normal.

So far 2 smears clear and ultrasound clear. So back to my doctor this week to get another referral to gynaecologist.

Please keep us updated with how you are going xx

Hi Leigh, Sorry you are going through this, I’m sure its a terrible shock and you want answers how this could have possibly happened. I had a 4.9 SCC tumor was told it had probably taken from 8 years , up to 20 years for it to develop. I hasn’t kept up with pap smears for many years, so totally my own fault, but treatment worked well for me and that was 7 years ago. I had no symptoms and felt fine, then one day started spotting very slightly, and being post menopausal i went to the Gynecologist. I wish you the best going forward with treatment, you can do this !

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Thank you for your replies ladies, I think I will ask the experts. My partner thinks they may be playing down how long this has been missed.
@Leelee09 i’ve to have a CT scan and planning before any treatment starts so I’m looking at possibly another 3/4 week. I didn’t think it would take this long to be honest. I got my GP referral in March so I’m on day 71 of the 62 day guideline for treatment starting.
They said my audit would take a year. X

Hi Leigh, can I just say I went through an almost identical experience to yourself last August except I had a HPV positive high risk smear result in the previous April.( which said to repeat test in a year) I also had an examination the previous November to that at my colposcopy clinic in which I was told every looked normal and it must have been my HRT that was coursing my bleeding. After the bleeding was getting worse in August I went back to GP who insisted it was still my HRT but after stating I wasn’t happy she referred me back to colposcopy. After initial examination ( again stating everything looked fine) they decided to fit a minera coil. When trying to fit it I started to bleed quite heavily. It was only then and after having another look she decided my cervix all of a sudden didn’t look right and decided to take a couple of biopsy’s. Two and a half weeks later I was diagnosed with CC. After my scans and an examination under anaesthetic I was told I had a 5cm tumour. I had chemoradiotherapy and brachytherapy starting in November last year and after only a couple of minor side effects I have come through this and given the news that the treatment was successful in April. I’m still waiting for the results of my audit and have been told it could be another couple of months till I get them. I’m the meantime stay strong, you will get through this and if you have any questions fire away. Good luck xx

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Thank you for sharing your story. It’s shocking isn’t it that we got missed! I’m still angry about it. I feel I should have been given a chance at the early treatments rather than thrown straight into Chemorads. I’m starting treatment next week, which is scary, but I’m so glad to hear you came through this ok. Xx

I’m sure you will too. A bit of advice. Drink loads, ( it’s very dehydrating ) and get plenty of rest. Good luck and go smash it xx

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Hi Leigh,
So sorry to hear your story. I remember asking the doctor the exact same question at the start of this journey about why the smear hadn’t indicated anything wrong and i remember thinking i couldn’t believe how fast it had grown in just 1 month! My tumour grew from 6cm when first finding out to 10cm by time i started treatment. I have neuroendocrine cervical cancer but told it’s not large or small cell ( so basically undefined). At first they thought i had adenocarcinoma until they saw the properties of the tumour and how fast it was growing. I was 2b.
Way later on, i was told that i may have had the tumour before my smear but it might not have been picked up because mine started higher up than where they go to in smears.

What has helped me with being scared about the unknown of what each treatment is going to be like, is thinking, any treatment you get is what a human can cope with. You will cope with it! Imagination and the unknown is worse than the actual treatment itself. Like all the other ladies have said here, it is def easier once you start treatment knowing what to expect and having a plan in place!
This is the best place to ask for help with any worries as it’s certainly helped me for sure!

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