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cant believe I’m here - surely not me - no one in my family gets cancer … this can’t be happening…

 I had an mri scan to check out my fibroids and they found a worrying lesion on my cervix .

The consultant examined me but said my cervix looked healthy so I’m really confused …

MDT meeting this Wednesday .  How long after do we generally hear what the next step is?

Since the examination I’ve had a lot of pelvic and back pain.  Although it strangely does seem to move around all on my left side.  I’ve also got spotting since the examination.

Feels so unreal, I’m weirdly quite calm most of time but night time is hard .. wake up unable to sleep, mind whirling.

Haven’t told anyone else apart from hubby.  When did you tell family ?  Should I await official diagnosis? 

Is there anything I should/ shouldn’t be doing, whilst waiting?

I work long hours, should I rest more? Should I exercise?

sorry for rambling post and sorry that you are also hereDisappointed

  • Hi  and welcome to our group.

    We’re here to help, so I’m glad you’ve found us. First of all, from what I can understand from your post, you haven’t had a cancer diagnosis yet? You have just had an mri and it’s found something that looks unusual but no other tests except a physical examination? 

    It can be quite common when having a scan that it picks up something else which might need to be checked out. When I had my first mri as part of my diagnosis, it picked up the fact that I had gallstones, and also something that looked strange on on my hip. Neither of those things was cancer-they were just called “incidental findings”. 

    The mdt will discuss what has been found and decide on any other tests needed, and typically cancer is diagnosed by a biopsy. You don’t have cancer until the doctors confirm that you do was my way of thinking, so personally I didn’t tell anyone until I had 2 pieces of information-a confirmed diagnosis and a treatment plan. If you tell people now, without knowing anything for certain, this will lead to worry for others and questions which you can’t answer yet.

    In my own situation I carried on completely as normal-I did have symptoms of pain and a lot of bleeding, but it’s a kind of limbo time while you’re waiting to know more. It’s very common for our minds to be on overdrive, imagining things, and this can make us believe we have all sorts of symptoms which were not there before. However, a useful piece of advice I learned is to concentrate on facts and not thoughts. 

    It depends on your particular hospital when you’ll hear the decision of the mdt, but typically it’s fairly soon after the meeting. Some hospitals will call you, or you might get an appointment for a further meeting with your consultant. It’s a positive thing that your cervix looks healthy, but the mri should have identified the position of the lesion that’s been found and from there it would be usual to have a biopsy, taking a small piece of tissue for analysis. This wouldn’t give you an immediate answer, as it is sent to the lab, so there’s typically another wait for this.

    While you’re waiting I recommend not using Google to diagnose yourself, as it can’t do this, and it only serves to increase anxiety.  Google gives general information, much of it having no bearing on your situation. Other than that, there’s nothing you need to do or not do so if you want to exercise do so, and if you need to rest if you’re finding it hard to sleep do that. 

    I hope you don’t have too long to wait to hear what will happen next, but in the meantime you are welcome to be in the group and ask any questions. I hope you don’t get a cancer diagnosis, but if you do there is support in the group to help you and I hope you’ll let us know how things go.

    Sarah xx

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    Cervical Cancer Forum

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

  • Hi Sarah

    Thank you for your prompt reply and sound advice, it is really helpful and reassuring.

    I have not yet been diagnosed and hoping that it isn’t anything but lesion was 2.5 x 1.7 and bilateral parametrium fat stranding was seen.  Consultant states lesion maybe in pelvis involving upper vagina but wasn’t sure so couldn’t take biopsy.  Hopefully the MDT will e able to figure it out !

    Anyway as you say I just need to put my big girl trousers on and try not to worry and hang in there ! 

    Thank you again Grin and yes hope it’s not too long await - I think !

  • Thanks for the extra information-I understand now why your consultant wasn’t able to take a biopsy. It might be that you will need to have this done under a general anaesthetic given the location of the lesion, because even if the assumption from the mri is that it may be cancer, the cells will need to be tested to identify which type of cancer it is.

    There are a number of different types of cervical cancer, and treatment might depend on which one it is, if it is cancer. It may be that it isn’t cervical cancer at all but something else, so things are very much up in the air at the moment. 

    Personally, I did find it better to know exactly what I was dealing with-you can’t change what is there and while it is shocking getting a cancer diagnosis, you know for sure what it is and how it will be treated so that gives you a focus. 

    Hope to hear back from you soon.

    Sarah xx

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    Cervical Cancer Forum

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

  • Hi

    Just an update my MDT meeting which took place last Wednesday, just asked for a colposcopy to be done - my consultant called me Thursday, the day after to let me know.

    The earliest they could fit me in on an urgent referral was the following Thursday.

    The wait has been horrendous with me over thinking a lot and worrying about every little twing!

    Today was the day of my colposcope.  We arranged to go out with friends the night before who were unaware what was going on.  That was a good distraction.  
    This morning I was a shaking wreck but managed to calm myself by convincing myself we were going to see the accountant rather than hospital! And I just tried to pretend that and it did help.

    In the appointment I had a consultant and 2 nurses who were lovely and tried hard to relax me.

    The consultant couldn’t see anything on my cervix but said had to go deeper and do a lletz as that’s what mdt requested.  When she did the lletz I bleed a lot so she said it’s a sign it’s something there but could be a fibroid but she couldn’t tell. 
    Now for 4 week wait for results although I feel relieved the colyposcopy is over and quite reassured that as far as doctor concerned my cervix looked healthy.

    Fingers crossed x 

    Just thought I’d update my timescales and experience incase it helps anyone!

    Hope you are all coping ok ! X 

  • Thanks  for the update.

    Waiting is awful-that’s for sure. It’s a long wait for results-it always is- but at least the consultant didn’t see anything of immediate concern, and even the consultant doesn’t know anything for sure yet, as many ladies do bleed, so hold onto the thought that it’s nothing till you’re told it is! Let’s hope it’s nothing of concern, but please keep us posted. 

    Sarah xx

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    Cervical Cancer Forum

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

  • Thanks Sarah your replies do really help and I do feel quietly confident that it’s nothing sinister but at least it’s getting checked properly Grin

  • Absolutely! I always encourage everyone not to think the worst in advance, as it’s such a waste -worrying when there are no answers at this point. Fingers crossed all is ok.

    Sarah xx

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    Cervical Cancer Forum

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