Recent 1b diagnosis

Hi all,

I was diagnosed with cc on thursday, my consultant at the time staged me at 1b but I need an mri next week. Obviously I didn’t quite take everything in and over the weekend I have got myself into a state over the stage changing drastically after the mri… My question is would the consult have staged me without good reason to believe that that’s the case? I know she mentioned that it’s very rare that the mri would change it by much but my problem with this is I was told 2 weeks ago how slim the chances would be of my lletz uncovering cc in the first place so I’m having trouble believing that it won’t change by much and I’m convinced I’m going to end up stage 3/4 :disappointed_relieved:

1 Like

Hi Eliza

I’m so sorry you find yourself here. Trust me when I say this bit, waiting for staging and treatment plans, is the worst. I was staged initially at 2b and my MRI and PETCT scans didn’t change this.
Remember that all the scans and tests are so your doctors can put together the best possible plan of treatment to cure you. The more information they have the better they can treat you.
Take care of yourself. Don’t fall down a Google black whole. Distract yourself with other things.
Good luck
x

Hi Eliza,

I’m in exactly the same place as you right now. Stage 1b1 after a cone biopsy a week ago and went for MRI scan this morning. Having a PET scan on Friday. At the moment, I’ve been offered a choice between trachelectomy and hysterectomy (keeping my ovaries) but like you am worried what the scans will show. I’ve already been in twice to hear “It’s bad news” so it’s tough to not wonder what could be next.

My tumour is at least 7mm deep but given that some of the piece that was taken for biopsy was as not cancerous, I’m guessing that the surgeon has a good idea of how big it is and that now we just need to check the lymph nodes for spread.

It’s such a frightening experience isn’t it? So many questions and possibilities and yet I didn’t feel ill before. Only sign was the slightest spotting occasionally after sex. If I’d been single, I’d not have seen anything as my previous smear was only 18 months ago and was clear.

Lots of love and support to you x

Sorry to hear this :frowning: I was diagnosed myself last week and still haven’t been given any indication as to the stage or grading myself until I have finished having my mri and ct scan. Just gotta stay positive as best you can and take things one day at a time.

Waiting for the MRI results is the worst part. I do think it’s very ususual for the MRI to change the staging dramatically. Try to stay positive and I hope you don’t have to wait too long for answers.

Thank you everyone for your replies, yes it’s definitely seeming that this the worst part, I had my mri and ct scan yesterday so just got to wait for an appointment for the results :pensive: I’m at the stage where my entire body hurts all of a sudden so I’m thinking the worst.

Keeping my fingers crossed for good news for us all xxx

Dear Eliza,

Try to keep positive. Your whole body hurting is likely to be worry, it’s not a symptom of cervical cancer. I too was diagnosed with Stage 1, because that’s what the biopsies indicated. Generally this will be correct, but there is always the CHANCE that the cancer has spread outside the cervix, and the scans are therefore essential to look at anything occurring anywhere else in the body. If you look at my back story you’ll see the scans revealed lymph node involvement, so I went to Stage 3C2 - but this is not going to happen for everyone! What did it mean for me? Well it’s still curable, they just have to use other methods = treat the body systemically. So no hysterectomy, but radio and chemo therapy. I have now been given the all clear. Like KatyG I had no idea I was ill, although I used to get very tired. Unfortunately, as others have found, smear tests are not infallible. I will keep everything crossed for all of you that the scans show the CC has not progressed, and that it’s squamous cell, which is slow growing and easier to treat.

You will get through this! X

Just an update from me to say my MRI was clear and my PET Scan showed one slightly inflamed lymph node that looks likely to be caused by my LLETZ procedure 2 weeks ago. I’m having surgery in 4th August and have to choose whether it’s radical hysterectomy or radical trachelectomy. I do hope that the lymph node sample taken during surgery will confirm that the inflammation was just that and not cancerous.
As you all say, you’ve got to stay positive and take it as it comes. The worry is exhausting.
I hope your scan results are encouraging and that you are managing to carry on in the meantime.
Much love xx

I’m glad you scans were clear I’m sure the lymph node will be from the lletz fingers crossed :crossed_fingers: my nurse called me last night to say my scans were clear and I’m booked in for hysterectomy on 12th August, it’s strange how you don’t feel the sense of relief that you would expect? I suppose I’m just anxious now that something might come back in the results from the hysterectomy :pensive: xx

Hi all,
I was diagnosed with 1B cc earlier this week. I have my MRI in 10 days and hopefully a treatment plan by the end of that week as the MDT is held on a Thursday (scan Monday). Am I being to optimistic hoping for a date for surgery by the end of that week?
I’m struggling to come to terms with the waiting times to know what’s happening and it’s making me really anxious. Like the OP, I’m worried they will tell me it has spread after the MRI - 10 days to wait. Do you get the MRI results yourself/explained to you or do they go the to MDT only and you just have to wait to be told? Sorry for all the questions, I’m a bit of a mess right now :pensive:

Hi,

Well I ended up having my mri the week after this post along with my ct scan, they booked an appointment for 2 weeks after my scans to give the results, at this appointment they confirmed no spread and I was still stage 1b and they gave me the date for my surgery which is this Thursday coming.
I know it seems like your waiting forever but they will do things as quickly as possible, my nurse actually called me just 4 days after my mri to tell me they were clear just because she knew I was anxious so I actually already knew before my appointment.

Hope all goes well for you xx

2 Likes

That’s good news, Eliza - both the fact that it hasn’t spread and that your health care professionals are looking after you well.

All the best for your surgery and recovery! X

Hi Sa_Rah,

I’m in exactly the same position as you. Diagnosed Thursday with cervical cancer and need an MRI scan to determine stage. In complete shock and doesn’t seem real right now and mind racing about worst case scenario which i know is completely normal.

The consultant didn’t give me any indication of stage on Thursday but on Friday the specialist nurse called me to see if I had managed to book a private MRI and I told her how I was feeling and she shared my histology result with me which was stage 1B. I immediately felt some relief but I know this could still change from the MRI results but I’m trying to stay positive.

The waiting is the worst I know and don’t be sorry to ask questions and reach out to people but also write any questions down to speak to your specialist nurse or consultant and remember no question is a stupid question.

I’ve got an MRI scan next Tuesday thankfully and hopefully get results the following week. Hope everything goes ok for you. This looks like a really supportive forum so reach out if you need support x

1 Like

Hi,
I’ve just been diagnosed with cc which I think she said yesterday was stage1b so it hasnt spread outside my cervix following my MRI my results are being sent to the local bigger hospital and I will be contacted within 3 weeks to discuss treatment plans which will be either a hysterectomy or trachelectomy I’m 35 and single and had always thought I would have children in the next few years so would like the option to carry but now I’m so confused by the possibility of miscarriages etc. I guess I need to do more research on both!

Hi Sianyg,
Just wanted to welcome you onto the forum. I had my trachelectomy done just over 2 weeks ago for stage 1B adenocarcinoma. I also had 4 lymph nodes removed. The first few days were tough, mostly from the gas pains from the laparoscopy, and now I’m just taking it slowly. I spent hours and hours researching my options so I expect you’ll be doing the same. Wishing you lots of patience and confidence for your journey.
Xx

Hi Semms,
How did you get on? Where are you up to know in the staging process? How are you feeling?
X

Thanks Katy, I hope you are recovering well. can I ask about your situation if you dont mind? How old are you? In a relationship? Obviously if you dont want to tell me that’s fine! 1😊 I’m single and 35 my view with having children was always if it hapens it happens but obviously now it’s hard decision but I’m worried if I do get pregnant in future about miscarriages so shall I just opt for a hysterectomy and freeze my eggs and go through sugeracy in the future if I want children or theres always adoption!

Hi KatyG,

Thanks for the message. I got my results on 11th August which was earlier than expected and less than 24 hours after my MRI. Thankfully stage 1B1 confirmed from MRI which was a huge relief.

My treatment will be a radical hysterectomy as I’m 48 and luckily have 2 daughters so this was the treatment I was told I’m having and I’m fine with it, I have no need for any of it now.

I feel extremely lucky that it hasn’t spread any further I know it could have easily been so different. My operation which will be abdominal surgery is booked for 14th September and I’m not thinking about it too much. I’m focussing on keeping myself active and healthy until the date of the operation. Not sure how I’m going to feel after it but I’m not worried about it, I just want it done and this cancer removed.

Hope you are recovering well.

Hi Sianyg,
I’m 38, married with 3 kids (youngest almost 2yrs), but the loss of my fertility was a massive blow to me, which is why I opted for the trachelectomy with lymph node biopsy. I’m still gutted that I’ve had to have surgery at all and the a bigger cone wouldn’t have been enough given that they found no further cancer in my cervix than what had been removed by the LEEP. Still, a friend pointed out that I’ve been future proofed in that there is now no cervix for the cancer to return to.
I don’t know whether we will ever try for another baby but I just couldn’t accept to close that door so finally and suddenly. It’s all been very fast!
It’s a very hard decision and I expect you’ll be googling like mad too. Everybody is different so it’s hard to take advice, but the best thing a GP friend said to me was “The decision you make will be the right one”. That helped me a lot.
Wishing you a good recovery and full health whatever you choose.
Xxx