Hello and advice please

Hi everyone, I'm 42f  and hoping for a miracle as I'm sure many of us are! I'm sorry if this is a bit long winded but I'm hoping someone has had a similar experience to me and can offer some advice or any recommendations at all.

I was originally diagnosed with 1b cervical cancer in Oct 21, I had a couple of lletz procedures and then had a radical hysterectomy in Feb 22. I made a good recovery from that and life went on. I wasn't offered any further treatment at that point.

Then at the beginning of last year, I started feeling bloated and uncomfortable. My symptoms worsened and I thought I had flu or a bug because I was struggling to breathe, I kept going for a little while not thinking for a moment it was related to my cancer until I ended up in a&e. I was diagnosed with ascites and very quickly told it was likely the cancer had metastasized. This was a year ago this week. I was diagnosed with metastatic mucinous adenocarcinoma.

I started chemotherapy and immunotherapy last June (paclitaxel, carboplatin and bevacizumab) with palliative intent. Things have been going well, the chemo got rid of the ascites and I've had a slight reduction every time. I had 6 rounds of the chemo and I'm currently on on number 13 of the bevacizumab with a CT scan every 3 months, the latest being a couple of days ago so I don't have those results yet. I am feeling well, I have some pain but that is manageable with paracetamol and codeine. Unfortunately I am not allowed to work (I think it's an insurance thing tbh) but I can still get to the gym and carry on with everyday life and luckily I have never had too many side effects. 

Currently the cancer is in my omentum, vaginal vault, retroperitoneal lymphadenopathy and liver (I think that's right but sometimes the details are a bit overwhelming and I don't always get everything right). 

Has anyone here experienced anything similar? Has anyone found any consultants in the UK or abroad that can offer any other treatments that could be worth looking into? I know this is a UK forum but I'm still hoping I can find someone, anywhere, who can offer me something other than palliative. I refuse to believe I can't beat this again. 

I'm sorry if this is a bit too long winded, I've never had the ability to write a consise message so thank you so much if you got to the end ️ 

Ems x 

  • Hello Ems, 

    Don't worry at all about not writing a concise message - that's what this forum is for, to give you an opportunity to express yourself in as many or as few words as you want and I hope that you will hear from others who can relate to what you've been through and who are willing to share their own experiences.

    What a scary time it must have been for you, from being told you had 1b cervical cancer and recovering well from it at the time to then ending up in A and E with ascites and being told it was metastatic mucinous adenocarcinoma. It's great that the chemo has got rid of the ascites and that treatment has been going well and you are feeling well suffering minimal side effects and are able to still go to the gym which I can imagine does you the world of good. 

    Unfortunately it isn't allowed on the forum to name consultants or healthcare providers but I hope that you will hear from others who have been through something similar and that they will be along shortly to share their treatment experiences with you and that they will give you an indication as to what worked best for them. 

    Our cancer nurses are also reachable on this free number 0808 800 4040 if you would like to talk to them about anything or ask them any questions  - the helpline is open Monday to Friday from 9am to 5pm. 

    I hope that the treatment will continue to work its magic - you seem to be responding really well to it! 

    Best wishes, 

    Lucie, Cancer Chat Moderator