Stage 4b diagnosis

Hi I’ve had a pelvic exentaration may 2024. I had cervical cancer 2001 and it returned last year. I was suffering from back pain , bleeding. Had scans , tests and told it had returned and my whole pelvic area had cancer and the only option was to have this operation as you can’t have chemo/ radiotherapy in the same place twice. I  now live with 2 stomas . It was tough at the beginning and I’m still struggling with the bags/goin out in public places. I was only 49 and discovered what was wrong when I turned 50. I wish you well and hope all goes well. Just stay strong you can do it. We have to fight this. Anything else you need to ask no problem 

Hi LOO1 

We’ve chatted before in the group, and I’m glad you have your plan in place now. 

I will have a look in the group to see if I can find anyone else with a 4b diagnosis, but I know certainly that others have had the same chemo combo of carboplatin and paclitaxel that you are having, and then the chemoradiation/brachytherapy. I hope your testing will show that the immunotherapy could work for you as I’ve also seen ladies have that too. 

I know that you’re in Spain, but I believe the same course of action would have been taken in the UK. The initial chemo does cause hairloss, but the Cisplatin doesn’t, so once you come onto that you won’t need the cold cap. 

It must all be a lot for you to deal with and process, but as I’ve said to you before please don’t focus on the stage number, just the treatment and getting through it. I hope you have a good circle of friends and support around you to help, and I know you will be worried about your dog, so I hope there are others who can rally round for you. 

Let me have a search around in the group this morning and I’ll tag those I’ve spoken to before who are going through the same treatment to see if they can come along and help with advice from their experiences. 

Sarah xx

Hi again Star10473 

We’ve chatted before and I know you post in the stoma support group-we’d all like to help you, especially those of us who understand what it’s like to have the total pelvic exenteration. 

To my knowledge, you haven’t told us yet what the issues are with managing your stomas and going out. What are the things you are finding most difficult? We might be able to offer advice for you if you can share what your difficulties are. 

Sarah xx

I’m going to tag Aquabambi Pleco DebDebW JUGSIE for now to see if any of these ladies will come back and post again and hope you’ll hear something. 

Sarah xx

Thanks for responding. My sister is here with me at the moment, I wanted someone really close to be at the appointment where I was informed about everything and she can also help me with my dog now om the initial stages of the treatment. 
it’s reassuring that it sounds like similar treatment to what would have been given in the Uk, and the doctor here also said cisplatin won’t cause hairloss hence why she said she thought using cold cap for the induction chemo could work for me. 
I will try and just focus on the treatment, day by day but I also can’t help feeling like I’ve been robbed of my life as I know it. I don’t dwell on these negative feelings but they are fleeting and then I try and suppress them and focus on courage and strength. 

Stage 4b sounds scary doesn’t it, I’m also 4b cervical.

lets start with the positives! It’s only in your lymph nodes, your are 4b due the clavicle lymph. If that didn’t light up you would be 3c2. 
you don’t have it in any organs, I’m the same. First thing oncologist said to me in our first treatment meeting was forget stage 4, stage 4 normaly in your lungs, liver etc. 

another positive is you have been staged correctly! So many are staged too low therefore their treatment doesn’t fix it and it comes back. Now they now it’s in clavicle you will have radiation that reaches that area. 

Another positive is recent years have introduced more effective treatments and many stage 4 cervical are being cured.

the induction chemo they are offering is new and reduces recurrence by 30percent. I did ask for this myself but instead my treatment was 3 weekly for 6 sessions. A much stronger dose. Perhaps you could ask for that? Or ask why your not having that?

if you have the marker for immunotherapy you will have that also, I’m having it for two years. It’s fantastic, not really any side effects and gives peace of mind.

stay off Google those stats are very old, join a fb support group xxx

Thank you for pointing out the positives. It’s not always easy seeing those small glimmers of hope through the other gloomy news. I know I read about induction chemo before I had my full diagnosis and I remember thinking I would like to understand if that’s possible to get so I’m glad I’m being given that. I will ask about doses etc when I meet with the oncologist on Monday. Thank you again, just a little positivity means a lot right now

Your guna be fine! Good luck xx

Hi, I was diagnosed 4b back in October. I have a 10cms tumour in my cervix with pelvis spread to lymph nodes and it's also spread to the lymph nodes behind my left and right collar bone. I wasn't offered radiotherapy. I'm having 6 treatments every 3 weeks of nab paclitaxel, carboplatin, pembro and bev, then the pembro will continue for up to 2 years. I was told i couldn't have pembro and radiotherapy at the same time. 

I have trouble goin out in public alone. I worry my bag goin burst are people looking at me. It’s really hard with the2 as one bag fills really quickly causing it to be more visible. I’m not sleeping well thinking of these things and getting upset