Newly Diagnosed

Hi LauraSH and welcome to our group.

It’s a good idea to keep your positive head on for now while you’re waiting for staging. It’s hard enough to be waiting without imaging worst case scenarios before you know what your stage and treatment will be, so try not to rush too far ahead with your thoughts. 

Unfortunately, no smear test can be 100% accurate, and things can be missed, although normally cervical cancer is considered slow growing. But every person, and every diagnosis is unique. 

However, you do need to sit tight and wait for the mri results to give you the final part of the picture. Early stage cervical cancer can normally be treated by surgery, and where surgery isn’t possible, then it’s usual to have chemoradiation treatment. We have experience of both hysterectomies and chemo, or chemoradiation, in the group so there should always be advice and support for you going forward. 

I hope you don’t have too long to wait to have your mri and find out your next steps. Please feel free to ask any questions in the group-we can all share our experiences and hopefully you’ll find that helpful. 

Sarah xx

Hi Sarah,

Thank you for taking the time to reply. I'm really trying to keep my positive head on. Doesn't help that I've managed to get food poisoning this weekend too - it never rains!

I have an appt with the doctor on Friday to discuss concerns and ask questions, and hopefully my MRI appt will be through soon. I'm sure I'll have many more questions as I go through this scary journey, it's very comforting to know there is a friendly and supportive community here to turn to so thank you for that.

Laura x

Hi LauraSH 

Oh, I’m sorry to hear you had food poisoning-hope you get over that quickly. 

It can be good to write your questions down before you go to your appointment-it’s amazing how much your mind can go blank when you’re in there, especially when you’re anxious. Is someone coming with you? An extra pair of ears can be very helpful when there’s a lot to take in.

Hope the appointment goes well and you get an idea of when you’ll get your mri. 

Sarah xx

Hello, 

im so sorry to hear you’re in the situation. I was in the same situation as you a few months ago. The agony of being told it’s cancer but no staging is just torture. I really feel for you because when it was me my head was everywhere. 

I really would just stay as positive as possible.and absolutely write questions down to ask at your upcoming appt. The biopsy would have been reviewed by a pathologist in the labs so perhaps ask the doctor to go through exactly what the biopsy really says and means. I did this with my doctor but ultimately I did have to wait for scans for staging and to know the treatment etc. my doctors all tended to be really reassuring throughout.

cervical cancer is very treatable though generally. I unfortunately had to go through quite a bit of treatment for mine but I’ve just finished it and made it through and should be cured. 

there’s nothing anyone can really say during this time as you ultimately need the scans. Take it a day at a time and seek support from your friends and family. You can absolutely get through this! 

Hi Beth,

Thank you so much for replying, I'm sorry for all you have been through. I hope you are recovering well from your treatment now.

Great tip about asking for more information about the biopsy results. I'll definitely be writing a list of questions ahead of Friday as I know my mind will be blank and I'll be there trying to hold myself together and avoid a dramatic meltdown! Fortunately my partner has the day off work and we have childcare lined up so he should be able to keep me on track.

Are you able to give me an idea of how long it took to get your staging results after you had your scans? I know it will vary from hospital to hospital but it would be good to have a rough idea so I can prepare myself for that wait too. 

I really hope you get a good outcome from all of your treatment, and again thank you for taking the time to message xx

Thanks Sarah, on the mend now! I'll have my partner with me at the appointment on Friday so I will have backup when my mind inevitably goes blank. Hopefully once I've had my scans and the ball is rolling I'll start to feel a little less anxious, the waiting is torture!

Appreciate your support and taking the time to reply xx

Hey, 

thank you for all the well wishes

so I just looked through my appts etc ti give you a rough idea. I do feel like after the biopsy confirmed  cancer there is a lot of 2 week guidelines to move you along fast. I swear I remember someone saying they had 2 weeks to organise my mri and ct

So I waited 8 days for my mri and ct. I then saw an oncologist consultant 4 days later and staging was done in that appt. The consultant said that just to make absolutely sure I then needed a pet scan but he was able to stage without it. I then had a pet scan 3 days later.

No I look back it seems like it all moved so quickly but it didn’t feel that way. Particularly as they ring you and give you what feels like a last minute scan appt so I didn’t get much notice for any of the scans as I guess they’re fitting you in to an already existing list. 

I did absolutely annoy the hospital ringing up and asking what to expect. They were helpful  advising on time lines etc. I always rang up the gynae oncology reception. I don’t know if that’s something you could do? 

also all my above could be different for you at a different trust but I do hope it helps. I really hope Friday goes well and you only need to have the least amount of treatment possible for it. I will be thinking of you 

Yes, the waiting is tough. I didn’t have long to wait for my results but this was pre covid days when things were a bit quicker. Even if the wait isn’t long, it can still feel like it when all you want is results and a plan of action. Things did become easier for me when I had this, so I hope you find the same.

All the best for your appointment on Friday.

Sarah xx

Hi Beth,

Thank you for taking the time to look up all of your dates, that's such a big help! Sounds like once I've had my scans things should move along pretty quickly. Hopefully the appointment for MRI wille through soon, I feel impatient to get started with things now. Once I've got the number for the correct dept (I don't actually know which hospital I'll be receiving treatment at yet) then god help them

I saw your other post re HRT, I hope you get all the answers you need and it all goes ok, maybe I'll be aiming all my questions about that to you on a few months! X 

Hi Laura, my story is very similar to yours, my smear came back as abnormal cells as that is what they look for. During the colposcopy the area was too big to treat but a biopsy was taken which returned with cancer cells, I had an CT scan before the cone biopsy. I had a pelvic MRI afterwards and eventually was staged as 1a1.