Newly diagnosed, have some queries please

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Hi Everyone, 

I was told recently that I have CC.  As most of you know the CC diagnosis along with waiting for scans etc. is an emotional rollercoaster you just can’t get off, I’m ok one minute and the next I’m a blubbering wreck. I’m trying to be normal but feel in a complete limbo state, sometimes feel like I’m outside my own body, I’m still working full time and my body is in the office but my head/mind is wandering down all sorts of roads.

From everything I’ve been reading on other posts after a diagnosis things move pretty quickly.  I was told that I couldn’t have an MRI until I had healed from LLETZ so my MRI has been arranged for around 6 weeks after my LLETZ  so still have 2 weeks to wait but majority of people seem to have their MRI within 2-3 weeks. 

Has anybody else had to wait to heal from LLETZ before MRI?  If so do you know the reason?

Ive had a chest X-ray but there’s been no mention of ct or pet scan and a lot of people seem to have ct/pet and MRI but not chest X-ray.

Has anybody else just had chest X-ray and MRI?  

I’ve been given an initial staging of at least 1b1 but I don’t understand why they do this when it depends on scans it’s giving me hope but that could all change once scan completed.

My appearing to be treat differently is playing havoc with my thoughts and just wondering if anybody could shed any light, I haven’t had a call yet from my hospital team so had no opportunity to ask the questions but I don’t want to alienate any of them before my treatment has even started.

Also, did anybody start feeling all sorts of aches and pains after they were diagnosed or had usual aches/pains that started feeling much worse?  I’ve turned into a stress head and hypochondriac since I was diagnosed.

If you’ve got this far thanks so much for reading and sorry it’s a bit scattered, any insights would be appreciated so much.

I’m happy to answer any questions.

Thanks

  • Hi  and welcome to our group!

    You're right in saying this limbo land between diagnosis and knowing your stage and getting a plan is difficult-things become much better mentally when you know exactly what you’re dealing with.

    I’m not sure how many ladies in the group got their diagnosis after a LLETZ, but hopefully any who have will come along and share their experience. I didn’t have one as I was diagnosed right from my initial appointment with a more advanced stage of cancer so a LLETZ was never part of the equation for me. I imagine that you need to heal from the LLETZ before the mri so that the images from the scan are more accurate, but I can’t be certain on that.

    Not every hospital does the same scans in every case, so I had an mri and Ct scan but no pet scan for example. I also didn’t have a chest xray, but did have my abdomen and thorax scanned at my pelvic mri. The provisional staging you have been given is their best guess for now, but the final staging will only come after any scans, and yes, it could change but hopefully won’t. The different scans produce different types of images, so the mri will be able to give the location and size of the cancer, and the Ct is usually to check to see if the cancer has spread anywhere away from the cervix. 

    The staging needs to be confirmed to assess which treatment is most appropriate as a radical hysterectomy is a possibility with a stage 1b1 diagnosis but not higher stages, so they need to be absolutely certain their assumption is correct.

    Our thoughts can go crazy at this stage and we are very conscious of every little ache and pain but it’s usually just our imagination running wild and our anxiety making us imagine things-the mind can be very powerful! Although you are having to wait longer than some of us for the mri, this is highly unlikely to have any effect on the ultimate stage and plan-cervical cancer is typically slow growing and doesn’t spread like wildfire from the start, no matter how much we might imagine this to be the case! 

    Please keep in touch and let us know how you’re getting on. We have a lovely group of ladies here who understand exactly how you’re feeling and we will offer support, advice and encouragement as you navigate all of this. You are very welcome to be here with us.

    Sarah xx


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  • Hi

    I am virtually at the same stage as you and yes your mind plays crazy tricks on you. I can feel every twinge deep in my body and everyone of them is like.. oh no this must be cancer symptons! I was told its probably stage 1 and need mri and ct to assess before they commit to hysterectomy. 

    I was diagnosed privately after nightmares with GP from a peace of mind biopsy of small lesion which gynae thought most likely inflammation. 

    Luckily I went to a Senior NHS gynae oncologist and she will still oversee my treatment. Only got diagnosed on Thursday but going today to see local consultant and possibly have a loop biopsy. The nurse says they think they may well get the tumour out but I will ask as I don't want to delay any follow up.

    So hard to keep going forward but we can fight this and win so hang on in there!

    Mas xx

  • Hi SarahH21,

    Thanks so much for your very thorough reply.  I read it after you had posted but couldn’t respond as I had forgotten my password to log in and have only just now reset it.

    You did put my mind at ease slightly because you know exactly where I am coming from and had the same worries and fears that I’m currently having.

    You were right about the wait after the lletz, a nurse from my team rang a few days ago and said I have to be fully healed before mri so that all that is scanned is the cancer and the size/ placement isn’t over exaggerated by taking account of the healing (not quite word for word but along these lines)

    I read your story and my goodness me what a hell of a road you have travelled, I only hope I have half your strength and pragmatism as I start my journey.

    Im still having odd days where I’m scared and thinking the worst, I know this is what most people feel at this stage, I really hope I stop feeling like this once I’ve been told the stage and treatment - which I’m hoping will be in 2-3 weeks.

    I’m so glad for these forums where the women are so positive and amazing.

    Thank you.

  • Hi 

    I’m on holiday with very intermittent wifi access, so apologies for not getting back to you before now. I’m glad you’ve had the reason for the mri delay explained to you and it does make sense. Hopefully it won’t take too long to know your stage and treatment plan-I think we all felt so much better when we had the info and knew what we were dealing with. Your mind can run riot with the not knowing! You are definitely not alone in feeling scared at times, I think we have all felt the same fear.

    But we’re here for support and encouragement, so please keep in touch as things move forward for you. We can listen, or offer hopefully useful tips and advice from our own experiences. 

    Sarah xx


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  • I  hope all is well with you xx

  • Hi Sarah

    Hope yyoi are well. 

    I have been diagnosed with cervical cancer a week ago. They told me it look like it's in its very early stages. Had my MRI a week ago and my CT is this Sunday. Really anxious for the results.

    It's been a huge shock as im a 30 year old healthy  woman. 

    Keeping positive but I do have a little cry now amd then.

    I am happy to be a part of the forum Slight smile

    Anna 

  • Hi  and welcome to our group.

    It’s such a shock to get a cancer diagnosis, isn’t it? It is good news that they think it’s early stages as that will be easier to treat, and things seem to be moving quickly which is also good.

    I hope things go well at your scan tomorrow-I find CT scans much easier than mri scans and the bonus is they don’t take as long. It’s usually a bit of a wait for results in the UK, but I’m not sure where you are. However once the results are available it should be the final piece of information and you will know what treatment you will have.

    You make want to make a new post to introduce yourself to the group, and you can do this by clicking on the “+ new” button at the top right. Sometimes things can be missed if you are adding to a post which has been inactive for a while. 

    I’ll tag  so that hopefully she will get a notification that you’ve made a post here.

    I hope you’ll find the group helpful and supportive, and please feel free to join in and ask any questions you’d like to. 

    Sarah xx


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