High grade cell changes with symptoms. Worried.

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I went in for my first pap smear at 32 (not smart I know) because I was having bleeding after sex, followed by spotting for a few weeks, followed by heavy bleeding with clots on and off for a month, backache, and yellow watery discharge. The bleeding stops for a week or 2, then starts again.                                                                                      When I got my results back it said I have HSIL which is high grade cell changes. I had an ultrasound as well that came back saying that the bleeding was coming from a vascular area in my cervix. I don't have my colposcopy for another month and a half, and I am terrified I am going to have late stage incurable cancer. Has anyone else had a similar experience and turned out to be fine? I am terrified because I have 2 little girls I have to take care of and I am so scared of leaving them.

  • Hi Momof2 

    I am so sorry you are going through this and can appreciate how terrified you must feel. My situation was different to yours so I cannot advise on what the outcome might be but I have some advice I thought might be helpful.

    I was terrified of the wait to see a consultant so I could know where I stood. My husband recognised this and reached out to a contact in the dept (he searched on the hospital website and found an email for the Head of Dept) and emailed with a plea for some support as he was so worried about how anxious I was - she was great got back in touch and put me on a cancellation list should any app pop up.

    Not saying that was exactly what helped speed it along but what I will say is I was advised a waiting time of up to 12 weeks for an appointment and I got a phone call 3 weeks later inviting me for an appointment the next day after a cancellation.

    Hope that helps in some way and I wish you the very best.

    Take Care

    Jen xx

  • Thank you for replying :) my appointment is only a couple weeks away now so I know I have to be patient. I have pretty bad anxiety so the waiting is just making me catastrophize and think the worst. 

  • I am exactly the same as you so in that respect I completely understand where you are coming from. It’s a completely natural reaction and exactly what I did before the wait.

    I hope it passes quickly, try and keep busy if you can. Easier said than done and not exactly something I accomplished myself I am happy to admit!

    xx

  • Hi  and welcome to our group.

    I haven’t had the same experience as you as I went straight to a cancer diagnosis from the start, but I had a tumour which was visible to the naked eye.  It was “locally advanced” cancer, which is not the same as late stage incurable cancer. 

    HSIL is not cancer, but of course until you have a colposcopy and a better examination of your cervix it’s impossible to speculate what your final result will be. However if there are been concerns about cancer it would not be typical to wait weeks for an appointment for this, at least not in the UK. 

    I can feel the fear coming from your words, but your anxiety will likely be making things worse for you. Waiting for further tests and results is extremely stressful, and we all hate that, but you just need to hang in there a bit longer. 

    I hope your results are nowhere near as bad as you are imagining, and that you’ll let us know how you get on.

    Sarah xx


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  • Hi  and welcome to our group.

    Would you like to tell us a little more about your story and what has brought you here? Do you have a diagnosis, and can we help in the group with anything? 


    If you’d like to introduce yourself you can make a new post by hitting the “+ New “ button at the top right of the screen.

    Sarah xx


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  •    If I do end up having cervical cancer is it treatable and survivable? I am so worried all the time because I have 2 younger children and I am so scared of them growing up without me. I have every single symptom of advanced cervical cancer so I'm almost certain they will tell me that's what it is. My appointment is a month away so the being in limbo and waiting to find out is awful and stressful.

  • Hi   

    What do you believe are “every single symptom of advanced cervical cancer”? The symptoms you have mentioned in your original post? 

    One of the reasons I ask is that you haven’t mentioned pain. In my personal experience because I have been through advanced cervical cancer as my cancer recurred, it involves a great deal of pain.

    Over the years in various cervical cancer groups, I have seen a number of women self diagnose themselves with advanced cervical cancer, but none of them actually ended up with this diagnosis. Are you using dr Google to diagnose yourself? If so, I’d like to recommend that you don’t as it increases anxiety but doesn’t provide answers. 

    You would not be left waiting for an appointment for weeks if cancer were suspected, and you would be quickly sent for scans rather than a colposcopy.

    Advanced cervical cancer is cancer which has spread, and can typically be seen. Your cervix for example would look very abnormal, and the tumour may be very evident on examination.

    Cervical cancer is both treatable and survivable, depending on the stage of diagnosis. I was originally diagnosed 4.5 years ago and I’m still here! Not all stages are survivable but it’s a huge leap from pre cancerous cells to stage 4 cancer for example. 

    It’s not possible to say that you won’t get a cancer diagnosis on further tests, but it seems you are letting your mind run away with worst case scenario without a diagnosis, and that must be causing you a huge amount of stress. It’s way too early to be having thoughts of leaving your children-I never once thought of that happening. It’s best to concentrate on what you know at the moment rather than speculating. I try to think that the time to worry is when there is something to worry about. At the moment you have a diagnosis of precancerous cells, and until you are told anything different you should try to accept that’s what it is. 

    Sarah xx


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  • I have pretty bad back and thigh pain but I suppose it could be completely unrelated. I was on google a lot before I found this forum so I guess I probably have been reading to much google. The biggest worry for me is the constant bleeding and being told it's coming from my cervix after a transvaginal and pelvic ultrasound. Your right though.. I don't have a diagnosis yet so I will wait to see what happens.

  • I would have expected that a transvaginal and pelvic ultrasound may have picked up any serious issues like a tumour but it seems that’s not the case. And there can be reasons other than cancer for bleeding.

    Can you contact your clinic and ask if you can go on a cancellation list for an earlier appointment because of your high levels of anxiety? That may get you seen quicker. 

    Sarah xx


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  • This is what worked for me - cancellation within two weeks possibly less.

    Can I ask who you have seen so far was it a GP or consultant? When I met with my consultant (having being referred by my GP after initial exam) he indicated what he thought but they had to carry out tests to confirm but that didn’t slow anything down. I was pulled in for an MRI under a week later and that was in between Christmas and New Year and a PET CT as soon as they could after New Year so I agree with SaranH21 if they suspect it they don’t hang about.

    I hope you get an appointment soon and it is news that well help relieve all this anxiety and stress

    Jen

    xx