Survival rates

Hi there

I am likely to be restaged as 3c1 this week. When I look online at statistics for reccurence they do not make hopeful reading. Can anyone help talk me down?

My tumour on my cervix is actually only 27mm, but I’m expecting them to say that one lymph node is involved this week after my PET scan. I am panicking that they’ll find something awful and enormous and untreatable on this scan.

I’m trying to get help with my tomophobia and anxiety but it’s not going to be instantaneous.

I think I need positive stories. I joined a fb support group for cc but I found myself taking their anxiety and worries on too so I left that.

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I’m very sorry you find yourself here, and do understand how you are feeling right now. It’s all very familiar.

Regarding survival rates online, please keep in mind that the figures you find will be out of date and many things that affect outcomes will have changed since they were published. It’s best to talk to your consultant, I asked mine what my chances were and he told me. That’s if you really do want to know. I always felt having knowledge was better for me over uncertainty, whatever that knowledge be.

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Thanks for your reply. I’m in this awful terrifying place right now where I don’t have anyone to speak to. I’m so frightened that I’ll go through the treatment and then die anyway. I’m only 35 and I keep panicking I’ll be dead in 10 years anyway.

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@Frenchie If it helps at all, this is exactly where I was at this point in my journey, they are normal feelings, awful, but quite normal. I’m a year on from surgery now and still worry at times but do manage to get on and enjoy life

Feel free to message me directly, I’m happy to keep you company, nobody should feel alone and sadly we often do xx

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I wish surgery was an option for me :frowning: I feel so hopeless

Have you got your plan yet? I know there are lots of ladies who haven’t been able to have surgery that are many years Ned, although they do tend to move on with their lives and leave the forum so it doesn’t really give you a true reflection.

I’m just going to pop you a pm x

Frenchie it’s honestly not helping you looking at survival statistics for recurrence when you haven’t even been staged yet, and statistics are published for the last five years so are already out of date. They include the elderly and don’t include newer treatments. You are an individual.

Once you’ve been staged after your petscan results, you should put up another post so that you can specifically engage with ladies who are at your stage and get some experiences and advice from them. If you talk to ladies who have had surgery only, then they can support you but cannot understand what treatment is like to go through. You are already aware that surgery isn’t an option, so it’s best to focus on the treatment which will be in your plan.

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I should have added a positive story to this, if it might help a little, since I did have a recurrence. That was almost 5 years ago now. I’m still here, still fine!

I’ve never read any statistics, either about my original diagnosis and staging, or my recurrence, and found that much easier for me. I felt I had enough to deal with, without the “what ifs”. Wanting lots of information about potential survival and prognosis might work for some, but I preferred just to get on with my treatment and subsequent surgery for my recurrence. It kept my focus much more positive.

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Sending prayers!! :heart:

Hi @Frenchie,

I’m so sorry to hear what your going through, I truly think the waiting and unknown is one of the worst parts, as it leave so much room in your mind to overthink and turn to Dr Google which I think I can safely say we have all done!

I spotted you think you will be re-staged as stage 3 so I just wanted to share a bit of a more positive story…

I was diagnosed with stage 3C1 cervical cancer last January with lymph node involvement and completed treatment from February - April 2023, it’s actually 1 year ago today since I went in to receive the brachytherapy which is the last part of treatment, but while I was rushing around the house getting my bags packed I also received a call from my consultant to say my pre-op MRI scan showed no signs of the cancer, so I’m also 1 year cancer free today!

Thinking back to the beginning of last year I was doing the same as you, self torturing looking at out-dated survival statistics online and going down a complete rabbit hole of constant negative posts, but soon realised it wasn’t making things any easier in what is an already stressful and anxious time!

I think there aren’t much positive stories on forums as when a lot of ladies have finished treatment or received the all clear, they tend to leave the forum, or are too scared to share out of ‘survivors guilt’ but I definitely believe as hard as it is, trying to be in a positive mindset and sticking to the proper advise and information websites helps so much!

Please feel free to reach out if you have any questions or just need someone to chat to! Sending lots of hugs x

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Did you not have to have the brachytherapy in the end? Gosh I hope this happens to me. I was restaged to 3c1 yesterday. It feels really scary to be stage 3 cancer. My tumour on my cervix is 27mm (I asked them to tell me if that had changed yesterday but they said there weren’t any measurements on there) and 1 lymph node so while the staging is terrifying I really hope that because it’s relatively ‘small’ it’ll go with the chemoradiation. I just need them to hurry up and tell me when it’ll start. The limbo is just excruciating and the consultant has been so awful to me as well (referring to me in her referral letter as having ‘crippling health anxiety’ - I don’t, I have tomophobia. And saying ‘eventually presented herself for her first smear’ making me feel absolutely awful. Making a comment about me calling the nurses etc - I’ve only called them 3 times since January.)

Many women have had successful outcomes after being diagnosed 3c1, you can do it!
A little insensitive of your doctor… I don’t know who doesn’t have anxiety after a cancer diagnosis!
I sure did!
Good luck, it will be over before you know it xx

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Firstly sending you so much love… I was diagnosed at 3c1… 5cm tumour slightly extending into the parametrium and 2 pelvic lymph nodes involved in May 2021, treated with chemorads and brachy and I’m very much still here and very much still all clear… heaps of love to you… you can do this xxx

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Thank you so much for your reply. I really appreciate it. You’ve given me hope that I might be ok.

Believe you will be be ok lovely xxx

@Frenchie hiya

I used to be on the forum as a regular whiling undergoing treatment for 3c1. My diary I am sure is still available if you want to read.

I am close to 6 months out of treatment and now hold my NED status with my next scan due in two weeks.

I am being monitored every 3 months for the first year with a whole body CT scan. My oncologist had a low bar when it comes to follow up so if I have a reoccurrence it will be picked up quickly.

I think it’s normal to be getting dark thoughts when you are not in control. Everything settled for me when I started my treatment as I had something to concentrate on and remembered I wasn’t an out of date statistic

Things are okay. While my body is pretty much back to normal I ache all the time like a 90 year old regardless of exercise and the hot flush! Man they are awful.

My mindset now is consistent living a life I want to only difference is I don’t want to do something until such and such a date. I just do it and enjoy it without any guilty

Also Counselling was a game changer for me right from the start

Peachy xx

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Thank you for responding. I’m finding the limbo and uncertainty really difficult to deal with. Combine that with a horrid gynae oncologist it hasn’t been a nice journey so far. She waited over a week to refer me, and only did so when I asked her what the next steps were saying ‘I suppose I can refer you now’. It’s been so long, this whole thing, that I just need to know something is being done. I’m frightened of the side effects and what my quality of life is going to be after. I’m 35 with two small children and I just don’t know how my life will be. I’m still in shock that this is happening.

I’ve started some CBT for my phobia so I am desperately trying to get some help while I can. I’ve got no idea when treatment will begin.

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@Frenchie

I feel for you as my journey was something similar and it was 77 days before I started treatment from diagnosis.

I am so sorry you are going through this and that you’ve not been treated kindly. The ladies here are all very supportive so keep posting and we’ll be here to support you as best we can.

Just remember you are stronger than you think even if it doesn’t feel like it right now xx

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I would agree with what others have said. A lot of statistics you read online are out of date Nd new treatments and data is coming out all the time. I was diagnosed as stage 4 in 2020 and 4 years later I am here. Please stay positive because it is so powerful to have a good mindset.

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Oh thank you so much for your reply! That gives me hope. I really appreciate it. Are you all clear for that long? That’s amazing!