Hi, I got my diagnosis of cervical cancer this week.
I feel like I shouldn’t be here, clear smears for years, negative HPV from my smear in January ’23. Only real symptom was bleeding after sex, which I mention to my smear nurse. She saw a patch an my cervix and booked me an appointment the very next day with a GP. GP took my blood pressure and said we will test you for STD’s and wait for your results. Why didn’t she look? Obvs STD’s came back clear, so did smear. So that’s it. But I was still bleeding, and I’m (was 
) getting married in June, and I don’t want to be bleeding, so I went back to the GP, as first one mentioned there’s a procedure for cervical erosion bleeds. This different GP actually has a look at my cervix then boom, 2ww referral, biopsies fast track, telephone call for urgent appointment and the awful words ‘sorry it’s cancer’
It’s like a bad dream. They’re doing an audit on me. The nurse actually saw something but the smear didn’t pick it up. Why not? I’m angry that the first Doctor didn’t look. I was menopausal surely she should have looked? I’d be still planning my wedding if she’d looked back in January.
I think I’ve gone through every emotion these past few days, and I’m fuming at the unfairness of it all. The receptionist who made my diagnosis appointment even forgot to ask me to bring someone along. That’s how much of a farce I felt this has been.
Any other no issue ladies out there been thrust directly into CC?
Thanks for reading xx
I am sorry you are in this position. It’s perfectly normal to be angry. Your history sounds like you possibly have adenocarcinoma rather than the more common squamous type. That can be missed on smears and some types are not HPV related. It might be worth finding out what type you have as it may make you feel a bit better.
That said, the GP not examining you is inexcusable. I think you should put a complaint in about that.
The main thing now is to focus on getting better. It’s the beginning of a journey but you will emerge from it and you will be stronger than ever.
Karen
Hi @Petesdragon i asked what type it was, it is the common squamous one, this is why it’s so confusing. I’ve got my MRI and chest XRay appointments I’m dreading staging. I’ve had a post covid cough for eight weeks now so in my head that’s obviously something more sinister!
Thank you for replying, i may complain to my GP, she should be doing better. X
Unfortunately smear tests aren’t totally reliable. You may well find you are at an early stage. It’s very easy to link all sorts of symptoms that are completely benign when your mind is going into overdrive. Even later stages are curable. Good luck with finding out. You will feel better when you know what you are dealing with.
Hi @leigh, so sorry that you are going through this.
I went for my routine smear in November, it picked up HPV and CIN2 cell changes, colposcopy and lletz before Christmas and diagnosis with SCC in January. My previous smears were all fine. There will also be an audit, I just have to send the forms back to request to be told the results of the audit.
I actually had several viruses and sinus infections with a persistent cough from Oct - feb so also thought the worse. My chest scans were clear and the cough did eventually clear up
Hi @alwaystheweekend. I’m hoping my cough is just a cough. Hopefully I won’t cough during the MRI!
How are you doing now? X
@leigh Do you have dates for your scan? I’m 8 weeks post radical hysterectomy now, still have some discomfort, but better than a few weeks ago x
This Saturday, I’m having the X-ray as well.
Good to hear you’re on the mend x
Hoping you get on ok and get an update quickly x
Im in the same boat, I was diagnosed Stage 1A1 just 2 weeks ago. The receptionist also didn’t tell me to bring anyone and said she couldn’t tell my what the appt was about so I naively assumed I would be ok. I have been having annual cervical screening due to being HPV + with low grade cell changes for the past 2 years and I also had a colposcopy with a biopsy just 12 months ago but nothing came up then. I had mentioned for several years that I’ve had severe pain & bleeding after sex as well as some other symptoms however I was told this was caused by something else but turns out the information I was given was wrong. I went for my annual smear again with no worries this time round however it showed high grade cell changes so I was booked in for a colposcopy however when I got there they told me straight away they were going to do a lletz procedure and the consultant told me that everything looked ok so the diagnosis was a massive shock. It’s been a whirlwind since being diagnosed the lletz treatment removed all the cancer with clear margins. I’m just waiting for an appt with my consultant to discuss next steps & a possible simple hysterectomy but I also will have an audit done. It’s so hard to know what to feel and also to believe it’s all gone as it wasn’t picked up. It’s been a rollercoaster and I don’t know what to feel. I’ve been reading the forums to see if anyone else has had the same experience and found your thread but I know how your feeling, I just don’t know what to believe hoping the audit gives some answers xx
Hello @Aries its like a nightmare isn’t it. One minute everything is ok and then it isn’t. We paid off our honeymoon, booked hotels and airport parking once I’d got my smear back ok. It feels like someone’s playing a huge trick on me. I’m hoping it’s just the op for me, I’m sort of relieved and yet anxious about how fast the MRI has been booked.
I hope your next appointment with the consultant goes well. I’ve been told ours have the meetings on a Monday and we’ve two bank holidays coming up 
x
I feel there doing this to often now its frightening i really do feel for you i feel like im banging my head against a brick wall not many know my situation ive gone worse there doing nothing because im only 2nd year positive but im waiting an op. I really wish u well and hope and pray for you xx
If it helps, I had my MRI and CT scan the same week I was diagnosed x
Reading your post has really touched me and made me feel less alone. Thank you for sharing your experience. I have been in and out of my GP surgery for the past 18 months with spotting, passing large clots and bleeding after sex. I attend my smear tests and all results have come back clear. My doctor told me the symptoms I was experiencing are firstly because of my contraception ( cerazette) and suggested I change to the depo injection, which I did. Bleeding continues as does bleeding after sex. I go back to the doctors’s pretty much every 4-6 weeks about this. I am told it is early menopause/ side affect of the depo injection. I change back to cerazette after 6 months of the injection. Symptoms continue. Back to the doctors, I am sent for blood tests which find me anaemic due to amount of blood lost and I am prescribed iron tablets. I have not been examined at all, no referral to gynaecology, they look at my all clear smears and see nothing to worry about. By February 2023 I am passing huge clots and end up in a and e. I am assessed by a gynaecologist who says my cervix appears abnormal. I don’t know what this means. I am referred for a colposcopy and biopsy of my cervix and womb and an mri scan. The surgeon tells me I have a large mass at the top of my cervix and that I bled a lot during the procedure. On 14th April ( almost 3 weeks after biopsy- delays due to strikes) I get my results and have that awful meeting with the consultant and macmillan worker where they tell me the news I was praying wouldn’t happen. I am referred to the marsden in Sutton for radiotherapy and chemotherapy( surgery is not an option as it has spread to outside of my cervix but not lymph nodes). Due to more strikes and issues with the marsdens booking system I have my first initial appointment on 4th may. I have a 7 year old daughter. My father has stage 4 lung cancer which has spread to his lymph nodes. I am meant to be his carer. I do not have the words to articulate what I am feeling right now. If there is a God, he must be on holiday. My macmillan nurse and consultant at the hospital have told me they believe this to be a case of medical negligence. I don’t know what I do about this, I just wanted to change GP before I end up putting a brick through their window. My macmillan nurse says it is not wise to make this change at this point in my diagnosis. She advised me to speak to the practice manager at the surgery to simply make them aware of what has happened. They are avoiding me and not taking my calls. The practice manager has told me she needs to go and speak to the directors and that the surgery have no confirmation in writing of my diagnosis of cervical cancer. I have emailed her hospital letters setting out my diagnosis and treatment. She told me I can change practice if I want and explained what this process would be. I know we have had covid/lockdowns/gps not being able to see us face to face which has added to an already difficult situation. Thank you for letting me share my truth. I feel better for getting this out there. I have been told smears are only 70% accurate in detecting cervical cancer. Any advice or suggestions as to how I get my head around this complete mess of a situation would be greatly appreciated xx
Hello @Kate2901
I’m so sorry to hear your story, it sounds absolutely horrific. I can imagine what you’re going through but you must feel a thousand times worse as you’ve been battling your GP and getting nowhere. I’ve actually witnessed this ‘I’m right, you’re wrong’ mentality with my GP and I’m taking this further once I’m better.
I can’t offer any advice really, I’m still in shock myself, but it’s comforting knowing we’re not alone here. Please keep in touch, the more support we have for each other the easier it will be.
Thank god for this forum xx
Hi Leigh,
Im in New Zealand and was diagnosed with stage 3c last December. I had exactly the same experience as you did with hardly any symptoms, only a bit of bleeding after sex. I am through menopause so thought the bleeding must have been something to do with HRT. I had had normal smears too , so never suspected Cervical Cancer !! I too felt so let down by the health system. I have since found out that there is a high mis-read rate of High grade cell changes … its a shame that this is not common knowledge ! There is an enquiry into my case here in NZ too, but unfortunately too little too late. It is important to move on and to try and be as positive as possible. Waiting for the Staging is the most stressful part. Once you know what stage you are and get a treatment plan you will feel somewhat better.
I finished my treatment 6 weeks ago and am feeling good ! I was told repeatedly that I was receiving a curative treatment so I am feeling really positive for the future. Stay strong 
I’m so sorry what you are going through. There are several options as to why your smear came back negative.
Either your cancer is not hpv related, or your body has already cleared the hpv but cancer had already developed, or your smear test was t reviewed properly. You could have a revision done , several ladies here have done so and found out their test was actually positive instead of negative.
For now
I wish you all the best of luck with your treatment and hope you are at a very early stage so treatment will be minimal invasive 
Hi Tiggy, thank you for your story, I’m glad you shared it. It’s good to hear you came through all this, I’m trying to think positive but the dark clouds still creep in. My review of all my results is Friday so fingers crossed it doesn’t change the staging.
I can’t believe there’s a few of us missed by screening. I’ve been trawling through my NHS notes and I’ve seen that the nurse had made notes on visual appearance of my cervix back in 2017 and 2020, but I’ve been HPV negative so no further investigation. So now I’m worried I’ve been ticking away for years. This is definitely the worst part of it all. You think the wait for the appointment for colposcopy then results is hard don’t you. This is next level. X
I can hear and understand your anger. I have found this forum to be a great support, though everybody story is different. I wish you well as you question and unravel the diagnosis process. I can remember when I was doing my initial tests imagining all sorts of things. It isnt easy but I try now to stop those thoughts. I am fortunate now to have a go-to oncology nurse that helps with information I need. Wishing you the best.
