Hi everyone, I’m new to the forum but sadly not new to Cancer.
I am currently living with metastatic cervical cancer (stage 4) with brain mets. I was initially diagnosed with stage 3 adenocarcinoma cervical cancer in May 2023. I have had PCOS for many years since being in my late teens and later on after my son was born also endometriosis so in some way or another I have always suffered with gynaecological issues. Long story short over the past few years things started to get worse with much more pain and much higher level of bleeding and after seeing my gynaecologist and having some scans they thought it was cancer, albeit they initially thought it was womb cancer due to the double size of my womb.
After some biopsies it was found that actually it wasn’t my womb but instead cervical cancer and it was stage 3 and had spread to my tissue outside the cervix and right pelvis lymph node.
I am lucky to be under The Christie and very quickly I started chemo radiation in June 2023. After 3 weeks of daily radiotherapy (M-F) and weekly chemo I unfortunately git a pulmonary embolism (blood clot in my lung) which saw me become an inpatient in The Christie for two months as I was quite poorly……unfortunately I had to stop chemo because of the clot but was able to continue with some extended pelvic radiotherapy. I wasn’t able to have the Brachytherapy either in the end due to the complications with everything.
Fast forward a couple of months and I ended up having a full hysterectomy to ensure everything was gone. I also found out after the surgery through the histology that it had also spread to my right ovary. I finally left hospital in the September to recover from the surgery at home.
I started to feel better in myself after a few months of recovery and all was going well and I was sure things would improve now after everything had gone.
We decided to go on holiday for Christmas 2023/4 given everything that had happened and I was absolutely ready for a break. I was looking forward to this and honestly was feeling really well with everything eg I had lost 6 stone through being unwell (I am a big girl so this was actually good for me) and I was not in pain or bleeding like I had been prior to treatment and surgery so all looking well.
We did go on holiday, however on my first flight out I had the strangest thing happen to me where I was chatting away with my husband whilst we taxis on runway and all of a sudden I couldn’t speak….. it felt like it was for hours but it was minutes but I was panicking. It stopped and soon as it started really but I was frightened and confused and by this time we were in the air…… we put it down to some new meds reaction and maybe the air pressure on the flight and off we went. Everything was fine on the holiday until a few days before I was due home and it happened again. This time for a little longer and again I was fine afterwards but I did say I would see my consultant/GP when I returned from holiday to see what this was all about.
I did see my GP on my return (actually same day I landed home) and they sent me to hospital. I thought it was a bit overly precautious but I went with it…. I’m so glad I did because long story short after some tests and a scan I was diagnosed with a brain tumour…….i couldn’t believe how this could be happening I was fine I felt fine and I thought they had it wrong.
Sadly for me they weren’t wrong and it transpired that my cancer had metastasised to my brain…… very rare indeed for cancer to spread from the cervical to the brain and so quickly. I had a 3.5cm brain tumour on my left had side which is why my speech was impacted.
Fast forward and I had an awake craniotomy in Feb to have it removed followed by some SRS brain radiotherapy. After my results I was then diagnosed with terminal metastatic cervical cancer. I honestly didn’t know what to do or think…. I had done my research and I knew how rare this was and likely that wouldn’t be alive much longer…… furthermore I had some spread to both of my lungs albeit only small nodules. Whilst I recover after the surgery we agreed we would leave the lungs being small to wait and see what happened at my next scan. Not long after my next scan we realised there had been further spread into my liver, momentum and my pelvic lymph node again and therefore I would need to start chemo to manage this.
In August 2024 I started 4.5 months of chemo (paclitaxel and carboplatin) yes it was tough and yes I lost every piece of hair on my body but if it reduced it or kept it at bay it was worth it in my eyes. I recently had some more scans to check on my brain and chemo and I’m delighted to say that my brain remains stable with no reoccurrence so far and my chemo (which was palliative to keep at bay and not increase it) actually had reduced my lungs nodules somewhat and actually there is no visible signs of the cancer in my liver and momentum which is amazing news.
Don’t get me wrong it’s metastatic so I know it will be back and constantly and ultimately it will never be cured but even with everything I will take the reductions and positives when they come ️
So I have. 3 month break now before my next scans to see how things are and if there has been any further growths in the current areas or any new ones. But like I’ve realised on this short journey so far nothing is guaranteed and everything can change quickly which I can’t control, but what i can control is how I deal with it. Don’t get me wrong I feel like I’ve been to hell and back and had so much treatment and surgery in the past 18 months but I’m still here defying the odds and I’m positive in every way I can be about fighting this in the best way I can.
I know my future is limited and that cancer will take me one day but in the meantime I want to live and appreciate what I have whilst I can. I know everyone deals with this horrendous journey in different ways but I’m here to listen chat and share experiences with anyone who needs me…. We’re all in this sad position together and I hope I can support and help anyone through this journey if I can.
So sorry for the long drawn out story but I wanted to share everything to try and give anyone in the same position some comfort and support if needed.
Sending you all the best wishes of hope, love and support through this journey xxx
Hi again Georgie78 and welcome to our group.
I’m glad you’re with us and hope you’ll benefit from having a place here both to share and receive some support: thank you so much for sharing your story.
My story is different, but as I mentioned before, has a few similarities I can identify with even though our situations are not the same. It’s hard to read all that you’ve been through over the past couple of years with this disease, but what shines through is your attitude and determination despite everything you’re dealing with. That’s a lot of surgery and treatment to go through-it must have seemed relentless. My own story is in my bio if you click my name, but I’ve been fortunate so far not to have metastatic disease although my cancer did recur very quickly and was very aggressive when it did. I was given a 30% chance of survival after my surgery, and I’m pleased to be defying the odds too!
I have often described myself as a “positive realist”- I live my life and don’t focus on the cancer returning, but I know I can’t ever use the words cured or cancer free and I need to live the best way I can while accepting that. I know I’ve been very blessed to come this far when I’ve watched many others not be so fortunate-I run a support group specifically for women who have had the exenteration surgery I have had, and have lost many friends over the past 4 years since I set it up. But it’s been so good to have the support from others who understand and we are a tight knit bunch!
We have other ladies in this group here with stage 4 disease, still on treatment with different types of cervical cancer and different spreads. I’d encourage you to have a look through the threads in the group, and connect with others by responding to any posts which you feel you’d like to. The group can be quite quiet as we don’t have so many ladies with advanced cancer but you are welcome to post and respond wherever you like.
I’m around the group and community a lot in my volunteer role as a community champion, so I’m always happy for a chat any time. It’s good to “meet” you and have you be part of our group-I love your attitude and resilience!
Sarah xx
Hi @Georgie78
It’s good to see you your name pop up again. How are you doing? I hope things are going as well as they can be.
Sarah xx
Hi mvic and welcome to our group.
What a difficult diagnosis you’ve had-that’s really hard to accept and get your head round.
My situation was different, but I hope that others with a metastatic diagnosis will be able to share their experiences with you.
Sarah xx
Aww so nice to hear from you and so sorry you are too going through this dreadful disease. I had a craniotomy to remove me brain tumour but also had srs radiotherapy after my operation to try and remove anything else that was left.
My treatment for my brain finished last February 2024 and I am scanned regular for my brain and just every 2-3 months. I’ve been pretty stable with my brain thankfully however the last two scans have started to see some changes….. they are being cautious and keeping a close eye on things and so far think it’s just scar tissue and white matter changes but they are mimicking in the scans what looks like reoccurrence in the same area, however they are not 100% sure so again just keeping a close eye on things and I will have another brain scan in September to check.
i also have other spread in my lungs and liver which I will start another 4.5 months of chemotherapy for commencing 4th September…… I also had the exact same treatment last August for the same and I responded well to not back then so hoping for the same results again on this course.
How are you doing post treatment? Are things stable for you at present? I do hope so 
I totally understand how you may feel especially as you mention the rarity, and because it’s not so common I feel at times there is limited advice that makes you feel equipped with what’s to come. Don’t get me wrong my consultant and support team are amazing but there are not always answers which I guess is the same for most people in this situation.
what I will say is last year I thought I wouldn’t see past a few months and here I am still fighting with everything I have. So whilst none of us know what’s ahead of us, with strength optimism, determination and positive attitude coupled with the best medical support and advancements we can have the best opportunity of longevity possible.
Always here to chat and share experiences should you ever want or need it 
️
Keep going you are doing amazing xx
Hey there, so sorry to hear you are going through so much at the minute 
it really is such a tough journey especially as we know those with brain mets is so rare plus the additional spread in other areas.
My brain is semi stable at present with some scan changes over the last few months so they are keeping a close eye on my scans more regularly just to make sure it isn’t reoccurrence and rather some white matter changes and scar tissue. I had my brain tumour and SRS radiotherapy (targeted radio specifically for my brain area). Last Jan/Feb so only started seeing changes one year on but hoping it’s nothing to worry about.
i too have spread last year into my lungs, liver, omentum (stomach) and pelvic lymph node and my chemo that I had last August managed to clear all but lungs. Sadly I’ve had reoccurrence and new cancer in both my lungs and quite a few new ones in my liver which is now causing lots of pain so I’m starting another 4.5 months of the same chemo I had last year and hoping it will shrink or clear even better some of it. Also doubling up on oral morphine and slow release morphine to try and get through the pain some days 
What chemo are you currently having? I can’t have immunotherapy unfortunately at the minute as my tumour type isn’t compatible apparently. I’ve obviously have a lot of pelvic radio and likely to have some
more on my liver in the new few months depending on how the chemo works.
its rubbish I know and never ending but as hard of a journey eg it is I’m grateful I’m still here having the opportunity it’s to try then. I am now 2 years 3 months into my cancer journey and hoping for lots more time 
How are you finding everything?
Always here to chat or share treatment challenges if you ever need anything and sending lots of love x
