Newly diagnosed

Hi JUGSIE and welcome to our group.

I’m sorry to read of your diagnosis and the time it has taken to get to this point. My original stage was 2b, although I had a recurrence and was able to have a total pelvic exenteration so I don’t have relevant experience to share, but I’ll tag some other ladies at stage 4 who I hope can come along and post with some support for you.

 Aquabambi Pleco DebDebW 

I’m glad you have joined us, and hope you’ll get some helpful support as you embark on your treatment plan.

Sarah xx

Thanks for the tag SarahH21  Hope you’re well

Hi JUGSIE 

Really sorry you’ve had this diagnosis. It’s a complete shock and I hope you’re doing ok and have support around you at this time.

I’m also 4b now and one of the places I have spread to is a lymph node in my neck. Mine is very obvious and protruding, the skin is also red as it’s now affected - can you see/feel yours at all?

Currently I’m on cycle 2 of the same cocktail you’ll be having, incl immunotherapy. 

The first few days I ride the steroid high, so I either have loads of energy from the steroids or I’m knackered as the steroids stop me sleeping! Once the steroids have worn off I have 2/3 days of leg muscle & joint aches, fatigue and an upset stomach but then I’m pretty good for the rest of the 3 week cycle. Currently in Malta for a few days and I love a relatively normal life on those 2 good weeks.

I have a few lumps I can see / and feel and after only 2 cycles, 2 of the lumps have significantly shrunk, 1 has shrunk a bit and 2 are the same incl my big neck node. 

We’re also considering palliative radiotherapy for my neck node, but haven’t made a final decision yet - I’m delaying this at the mo.

Also, whilst stage 4 technically isn’t curable, it can be treatable and I know several stage 4 CC ladies who have got to NED (no evidence of disease). 

Sending hugs and thinking of you at this difficult time.

J x

Thank-you x

Hi,

Thank - you much for replying. I'm sorry to hear you are also stage 4b. My lump in the neck isn't showing at the moment. My current symptoms are lower abdominal.and back pain, with some vaginal bleeding and blood in urine. I am finding it all very difficult to process and it's all happened so fast, and I'm yet to be assigned a Macmillan nurse to talk to. Do you mind me asking if you hair has started falling out yet?

Thanks 

Xxx

It is an awful lot to process initially, and I’m so sorry you’re going through this.

Hopefully you’ll have contact from a nurse soon, as they are a great support system.

Please feel free to ask anything… so the Paclitaxol chemo causes the hair to go pretty quickly tbh - although you could try cold capping. 

Personally I didn’t try the cold cap as I’d already lost my hair from my initial chemo and I hated my regrowth - I prefer how I look in a wig!

it started falling out just before cycle 2, so I shaved it all off as I find the hair falling stage really annoying.

Have you been given any indication as to when your treatment will start? X

Yes, next Thursday. Were you given information where to get your wig from? 

That’s great you’re starting so soon! 

I think they give you a wig or a voucher towards it - but I’m not sure as I bought my own

Ive bought 2 wigs now from May Wigs, they’re human hair ones with the most amazing hairline as all hand stitched, they look SO realistic! Not cheap, but she’s half the price of some other human hair wigs from manufacturers which I tried on and didn’t rate the hairline as machine stitched.

Also, I worked out what I’d normally spend on a cut and colour during the year and overall it was about the same.

Highly rate May Wigs. If you can, it’s worth it. My hair was really long and a big part of my identity so when I lost it initially it was probably one of the hardest parts of the journey for me. This time around I’ve gone for something a bit different! (The first time I got something very similar to my bio hair)

Hi. I also have stage 4 cervical cancer. I was hovering on the borderline of 4a and 4b and apparently I'm 4a but opinions differ. Mine is in lymph nodes in my stomach. And, my pelvis was highlighted on the pet CT scan but were keeping an eye on this and it's not confirmed. So, I'm under curable at the moment. I'm just about to have cycle 3 of 4 of chemo and then plan is to move on to radiotherapy in early December. Another lady I talk to, I found on TikTok and she is 4b because it had spread to lymph nodes and her liver. On her most recent scan her lymph nodes and liver were clear and her tumor had shrunk significantly. So, don't give up! 

Thank you so much for all the information. My hair is long too, so I know I will struggle with losing all my hair.

Thank you for replying. Hearing all your stories gives me hope. Good luck with the rest of your treatment.