Newly diagnosed, waiting for scan results

Hello

I was told I have cervical cancer on 5th April after a colposcopy.  Looking at the letter the consultant wrote to my GP, it's squamous cell and he's put grade 1b2 with ??   I guess he needs to see the scan results.

I had an MRI on Easter Monday and a PET scan last week so now I'm just waiting to be called in yo find out what treatment I'll have.  

I've had low back pain for the last few months and realy bad tiredness - I actually wondered if I had chronic fatigue.  I haven't seen tiredness mentioned as a symptom of cervical cancer, does anyone else experience this?

 I've been pretty calm for the most part but I've been bleeding since Saturday with worse back ache and low abdominal cramping.  It's hard work stopping my mind racing ahead and worrying that the cancer is bigger than they thought.  Meditation helps, and breathing exercises but I just want to know when my appointment will be.    And then I don't, if that makes sense!  I feel like I got on the wrong train, I am speeding towards a place I don't want to go and I can't get off!

  • Hi m1ssy,

    I got diagnosed with cervical cancer in nov 22, i was 42 and like you wasnt too sure what i was dealing with.  I found that taking it a step at a time and trying not to unneccesarily worry helped me (easier said than done i know) but mine was caught early and after mri’s and ct’s etc i found it hadnt spread thankfully.  
    Ive had a radical hysterectomy to get rid of the tumour and now just started radiotherapy to zap all the surrounding area, furture proofing i call it Relaxed

    I too suffered with lower back pain but im really not sure if it is related or not as i still get it occasionally

    I also had just started to get an ouderless discharge which they said was definately due to the cancer.  Apart from that i had no bleeding, tiredness or any other symptoms so i cant really comment on that, and mine was caught in my regular smear test. 

    After my MRI scan i waiting about 3/4wks at least before i was called in for an appt, i know it can vary and the waiting is the worst part i feel.  Just take it day by day, appt by appt.  Try not to think too far ahead. 
    As for the bleeding and lower back pain, might be worth while speaking to your dr or trying to speak to your specialist (if you have one yet) or a specialist nurse - i think they have forums on here where you can ask a qualified nurse questions, migh be worth trying that. 
    I really hope you get an answer soon so you know what you are dealing with.  If its early stage like mine then it definately is treatable to get rid Ok hand tone1

    keep us posted on how you get on and all the best.  You are not on your own and its ok not to be ok Hearts

    Bubbsy80  x

  • Hi  and welcome to our group.

    It is very hard to stop your mind racing when you don’t have all the information you need yet.  has given you some very good advice about taking things one step at a time-that’s honestly the best thing to do at this point. 

    The MRI and pet scan results will go to the mdt (multi disciplinary team meeting) where the specialists involved in your care will formulate a treatment plan. The question marks from your consultant are simply because he/she cannot be sure of everything yet-the scans are needed to check on the size and location of the tumour, and if there is any spread, so at this point it’s just an educated guess, as staging can change after scans. The staging will determine the treatment plan, for which the guidelines are pretty standard with some individual tweaks.

    You do seem to be quite symptomatic so I wondered if you’re taking anything for your pain? If not, I’d recommend asking about that. Levels of pain are different for everyone so you can’t make assumptions about anything on that basis-some ladies report high levels of pain with a lower stage cancer than others with a more advanced diagnosis. It depends on the individual, and the size and location of the tumour. 

    The waiting for results and a plan is an awful time, and most of us would say we felt much better when we knew exactly what we were dealing with. I would hope that you don’t have too long to wait now, but you have to allow time in the process for the mdt to meet (typically that’s once a week) to discuss your case. 

    Fingers crossed your staging will not not change, as that would offer the opportunity for surgery, but even if it does many of us in the group have successfully been through treatment for higher stages cancer and we’re here to help support you from our own experiences. You’ve just got to hang in there for now and use your self help techniques if you begin to get very anxious. 

    Please let us know how things go for you and feel free to use the group to ask any questions or just share your feelings if you need someone to talk to.

    Sarah xx


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    Cervical Cancer Forum

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  • Thank you so much   and  

    Glad to hear you're onto the radiotherapy  - how are you finding it?  

    I called my consultant's secretary yesterday - the MDT meeting is this morning and she'll call me with an update later today.  I'm pencilled in for a radical hysterectomy on Tuesday so I need to know if it's happening so I can make arrangements for the children!   I just want to get it done.  Feeling a bit apprehensive but got my positive mojo back. Muscle

  • Hi  

    This is all sounding very positive and moving quickly for you. It’s good not to have a long waiting time for surgery, and hopefully that will be everything over and done with for you. 

    I’m sure  will be able to share lots of good advice with you having just been through this herself, and it will be good to have a buddy here who can share experiences. 

    It’s natural to feel apprehensive when you’re about have an operation, but so glad to read you have your positive mojo back as that actually does help immensely. 

    Keep us posted when you can, and I’m sending all good wishes to you for a successful surgery.

    Sarah xx


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  • Thats the spirit, your positive mojo will get you through this, especially the times when you feel you are struggling, keep that positive mojo.

    im only on my 4th session of my first week of radiotheraphy so very early days on the radiotheraphy but so far so good.  Taking it a day at a time and crossing it off my treatment calendar every day so feeling good so far thank you Ok hand tone1Ok hand tone1

    Glad to hear you are on the list for your surgery next week…you wouldnt be normal if you weren’t apprehensive, but again just take it one step at a time.  After your surgery take your time and let your body heal…listen to your body not your mind when it comes to resting and not doing too much. I found the resting hard as i felt guilty for not doing anything, but slowly began to understand that your body needs the rest and you need to let people help in anyway they can so as you can get that rest. Do you have support around you for the first 5/6wks post op?
    Your specialist will give you all the info for post op care and i found the specialist nurse a massive help so make sure you get their name and direct number for when you are at home and may have questions.  Any niggles, dont suffer, phone them and they will advise accordingly.  

    Im sending you all the luck, and i hope your op goes well. 
    please keep us posted when you are able on how you got on.  Will try to reassure where we can

  • Hi  

    We must have been typing at the same time! Joy

    Glad you’re feeling ok so far on radiotherapy-I think it helps to count the days off on a calendar as it gives a visual reminder of the fact you’re getting through it, and that it will soon be over. Give us a shout if you do encounter any issues with bladder/bowels as treatment progresses. Obviously tell your team, but we might also have useful tips here from our own experiences. 

    Keep us posted too as you go along if you can-it’s so useful for new members to have real life stories from ladies like yourself to give encouragement and support. 

    Take care

    Sarah xx


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    Cervical Cancer Forum

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  • Hi   

    Yes we must have been writing same time Rofl

    Thank you i will defiantely keep you posted as i go.  And im sure wont be long before im needing a bit of advice on side effects, so will be in touch. 

    I hope you are doing ok

    Kath (Bubbsy80) xxx

  • Hi Kath 

    I’m fine thanks-cleaning drawers and finding all sorts while listening to Tchaikovsky. I know how to party! Joy

    Sarah xx


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    Cervical Cancer Forum

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  • I had my treatment and then did some washing and had a sort out of clothes all while listening to west side story soundtrackMetal tone1rock n roll baby Metal tone1 GrinGrin

    Glad to hear you are doing well

    xxx

  • Hello  and  

    I finally had a meeting with my consultant yesterday.  Radical hysterectomy is booked for 16th May, so two weeks later than originally planned.  It was a bit overwhelming listening to all the details of exactly what he is going to do and how, and I feel wiped out today!  Still, its good to have a plan.  I had my pre-op assessment by phone this morning and I have to go in for blood and mrsa tests next week, so its all going in the right direction.  

    Wishing you both a lovely bank holiday weekend, and some respite from the radiation treatment  ?!  x