New member - referral appointment next week.

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Hi all

Ive been reading through recent posts and so glad to have found this group - so much 1st person experience and empathy together with real practical advice.

I had a smear last week (4 years since last one but as I’m over 50 I hadn’t been called for one) and nurse immediately told me she was going to ask the doctor to “come take a look”. I said I would prefer female doctor and when she saw me she said my cervix looked very “friable” and asked me to come back next day to see a more experienced Dr. The next day I saw 2 Drs at the GP surgery and they again took smears and made an urgent 2 week referral, saying that what they could visibly see, together with symptoms I’d described, could be cancer.

Of course, having now googled more about cervical cancer I feel so foolish not to have realised the symptoms. Each one I had explained away…. irregular heavy bleeding …just getting my HRT right…watery discharge for over 18 months…just bought various treatments over the counter for thrush etc (none worked)….lower back ache…assumed herniated disc and saw physio regularly…

Even last week when I bled as soon as she started smear, I just said…oh that’s normal for me. I always bleed at every smear and have been told for years that I have an erosion or ablation on my cervix.

Now of course I realise each one is a classic symptom of cervical cancer and have convinced myself that I’m late stage…with potential tumour pressing on my spine…(really hoping not but have the dread). This is why I’m wide awake at 4am posting on here. 

my referral appointment is next week. Im dreading it. I’ve been bleeding heavily and quite sore since smear last week. Im not sure what to expect next week and worried how painful a biopsy might be…Im going to a concert same evening and wondering if im being a bit naive thinking I will be able to go/enjoy it. 

Im done with Google…sticking to more helpful resources like this. I see from others posts that it’s potentially weeks more to go until I get a diagnosis. As many others have said, every day of waiting feels like a week…but I see from this forum there’s a lot more of that to come.,

Im grateful for all the helpful posts I’ve already read and see the range of diagnosis and treatments people are having which gives me encouragement that there are others who have been through much more and understand. 

  • Hi  and welcome to our group!

    Take a deep breath and try to relax. It’s a massive jump in your mind from some gynae symptoms and a friable cervix to advanced cancer with a tumour pressing on your spine, but the mind can make us think all sorts-none of it usually correct thankfully! 

    Glad to see that you’re going to keep away from Dr Google-he is definitely not your friend right now and will not help. You’ll only serve to frighten yourself and increase your anxiety. 

    I didn’t find the biopsy at my referral appointment at all painful-it’s a punch biopsy they did for me and I can’t say I really felt it. However I was bleeding a lot at that appointment and afterwards, so I wouldn’t have been able to go out to a concert that evening. I’d had a lot of poking about at that visit and was a bit uncomfortable and crampy that night with the bleeding. Might not be the same for you though. 

    The gynaecologist will assess your symptoms and do biopsies and have a good look at your cervix. He/she is the expert rather than the gp or surgery nurse, so I don’t think it was particularly helpful for you to have been told it could be cancer. There are so many gynae issues can cause us problems which aren’t cancer, but the definitive answer will come from the biopsy.

    If it is cancer, then it can be treated and that’s the good news! Lots of tests and scans to go through first as you have seen, and it does take a while for all the results to be collated. But it’s important that your doctors have a full picture to make the decision on whether a radical hysterectomy might be possible or whether chemoradiation is needed and surgery is not possible. We have experiences of both surgery and chemorads in the group so plenty experience to help support you. 

    The waiting is awful and it happens at all stages of the process to diagnosis and treatment planning. All I can suggest is trying to keep yourself busy and not spend every minute in a state of anxiety before you know anything. It’s actually a relief to get a final diagnosis and plan, because then you get back some control and focus to deal with this. 

    We do have lovely helpful ladies in the group so please feel free to post any questions, vent away or share your worries. We’ve been there and understand and are here to help you through if you get a cancer diagnosis. Lots of us have come out the other side, and you’re very welcome to be with us. 

    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 - all very sound advice that I will take on board. Also, taking a deep breath! It actually felt helpful to just write down all those runaway thoughts that I have been swirling in my brain since last week but unable to say to anyone!
    But now I’ve done that, and with your helpful advice, I feel I can get to next week without upping my anxiety levels and jumping 10 steps ahead. I think the junior Dr had such a panicked look about her and did a bit of a “let’s sit down I need to let you know this could be cancer” that her anxiety increased mine. 

    Its helpful to also understand what might happen next week - the letter said absolutely nothing about the appointment and only about Covid risk prevention - so thank you so much for that.

    I’m going to keep myself busy over the next week, keep deep breathing and not be pessimistic letting my head run away with me. 

    Thank you. 

  • Our minds can go to crazy places when we don’t know what’s going on but I know how unhelpful that can be from experience! We tend to rush ahead with our thoughts but sometimes just need to try and take a step back. I just asked at my referral to do everything he could at that one appointment to get as much information as possible, but it turned out I had a visible tumour so I’m sure he knew what he was seeing. However he still didn’t mention cancer to me, so I didn’t overthink before I went back for my biopsy results. I didn’t even take my partner in when I got my results! I didn’t know either what would happen at my referral appointment-they give so little information in letters-but I was lucky enough to see a kind gynaecologist, who took his time and did as much as he could on the day. I had my biopsy results back in a week, but this was pre covid. I hope you don’t have to wait too long for yours.

    Use the group to write down any fears or worries-other people don’t really understand if they haven’t been through something similar, but we all do, and it’s good to have that extra support I think. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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