Diagnosed with CC this week

So on Wednesday I was informed I have cervical cancer. This came from a biopsy to remove an ectropion just over four weeks ago. I am going for a mri scan today and a ct scan Monday.

I don’t understand how this has happened I had been having bleeding during sex for around 12-18 months but kept getting fobbed off with STD checks which were always negative. In September 2020 I had a negative smear test.

In April of this year I was hospitalised and developed sepsis - it was believed I had pelvic inflammatory disease which had then developed abscesses. My consultant tells me the two weren’t linking and the ct scans I had in April of which I had two showed no tumours or gross growths.

I can not believe this is happen to me, I do everything I am meant to do I went for all my smears I went to the doctors about the bleeding.

I am so scared that this mri scan is going to uncover more and they are going to tell me it’s terminal I don’t want to go I realise this isn’t helpful and I need to know what I am facing but I just don’t want too.

I have a ten year old son with autism he will starting high school this September and he needs his mum. I just can not get my head around this at all.

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Hi Leahlouise

So sorry that you got the news that no one wants but you’ve come to a great place for support. It comes as a great emotional shock and so many of us start off by fearing the worst. Where you are now is very difficult because there’s a lot of unknowns and it’s incredibly unsettling; I found that once I knew the stage of my cancer and had a treatment plan I was more able to deal with my feelings.

It is reckoned that smear tests prevent about 75% (possibly more with the recent introduction of HPV primary screening) of cervical cancers; they are not so effective at preventing cancers that start in the glandular cells higher up in the cervix.

If I might speculate a bit albeit I’m no expert; maybe it’s possible that your bleeding was entirely due to the ectropion so it’s very possible your cancer could be very small and easily treated. Even if that’s not the case at least your cancer has been detected sooner than later.

I stopped going for smear tests when I was 50y and I was diagnosed age 60y on the basis of symptoms. I was celibate at the time so my symptoms of bleeding were probably not picked up as soon as if I’d been sexually active. Even so my cancer was stage 2A which although not great was very cureable.

I hope all goes as well as possible for you.

x

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Thank you jazza for your reply it means such a lot to me. I just can’t believe this is happening and when people say you go through a rollercoaster of emotions you really do. I aren’t an angry person but every day I feel a bubbling rage, then I feel scared so so scared a scared I don’t think I have ever felt before. But other days I wake positive and wanting to fight this.

Currently I just feel in limbo but also want to hide away from it all through fear of hearing worse news. Since I found out I am constantly feeling twinges and pains and convincing myself it means it has spread. I really hope the grading and treatment plan helps me as I am driving myself mad at the moment.

It sounds like you had a tough time but that you have smashed it and come out of the other end how amazing and inspirational of you. :heart:

I also wondered the same about the ectropion as what you posted above. That would be very positive

Xxx

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Hi Leah Louise

I was looking for a post in the other forum so I thought I’d search elsewhere.
I’m sorry that this has happened. It does seem strange that the medics previously had all said that you had nothing to worry about regarding your cervix.
As jazza said, hopefully things will be better when you have more of a plan. It is often the not knowing which is the worst and the waiting.
I have a son with autism also, but he’s 33.
I so hope that you get some answers soon
Xxxx

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Hi Rebecca,

Thank you for writing to me again. I just feel so utterly helpless and saw a Facebook page for another young lady around my age who had the exact same experience as me but hers was detected within two months of the bleeding starting and her cancer has now spread and she has months left. I am utterly convinced that they are going to tell me it’s not treatable.

I am hoping I will only have to wait the maximum of two weeks to find out. However I just don’t feel able to go back and hear what they have to say.

Do you know if it is true that smear tests don’t detect cancer only pre cancerous cells? As this is something I have read online.

Thank you again for your support xxx

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Hi again x

I’m fairly sure smears detect both and they can tell how severe they are ( hence you have some idea in the smear letter though it can be up or downgraded at punch biopsy).

It might be that high grade smears could be early cancer.

I know McMillan work with anyone who has a cancer diagnosis- have you thought of contacting them for emotional support? There was someone on the site with a diagnosis who was saying how helpful they were

Sending you all my best hugs x

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I have been allocated a Macmillan nurse when I was told at hospital. I am going to call her tomorrow morning I think.

It’s very tricky because I have so many unhealthy and morbid thoughts and feelings but don’t feel I can share them with the people closest to me as I know they are all hurting and worried too.

Xx

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Of course you have those feelings, that is natural x
Important you can share them.

Yes, it’s important you go to the meeting and know what you’re facing. I was told in November 2020 I had was Stage 1 cancer and CIN3 (following a colposcopy), but in December after PET and MRI scans it was confirmed as Stage 3C2, involvement of lymph glands in the pelvic region and the abdominal para-aortic nodes. I had three ops for pre-cancerous cells 20 years ago, and attended all appointments and smear tests thereafter - which were all coming up as clear; and wrong, as we now know. Sadly screening is not a perfect science, but the important thing is to work with where you are and to do everything to get better. These things happen. The important thing is for you to get well, for yourself and your son. Be brave, talk to your MacMillan nurse and ask for a booklet that will help you explain things to your family. The chances are good that the cancer is not advanced. Even Stage 3 is curable - I had my post treatment scans and blood test in April and they found ‘NED’ (no evidence of disease).

Keeping everything crossed for you. X

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Hello jacks thanks so much for your response. It’s very honest and everything I needed to hear. You are amazing and it is so reassuring to hear you have received the news of NED. :heart: I did wonder about what it would mean if it had spread to the lymph nodes, and it is reassuring to hear it can be treatable. I called my nurse today and am awaiting a call back tomorrow. I went for my ct scan tonight, and my mri was Friday so hopefully I will know more soon.

Xx

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Hi there

Just to give you some hope. I had stage 3 cervical cancer with lymph node involvement nearly 4 years ago. It rocked my world and not in a good way. When you have a treatment plan you will be able to focus on that and get through it I had chemo, radiation and Braccy over 6 weeks. It really isn’t the nightmare you think it will be in fact we used to have a real giggle in the chemo ward and sneak sweets and cake in. Some months later I had an MRI and the tumour and dodgy lymph nodes had gone. I’m still in remission. You will have highs and lows , it is natural. I got myself a buddy on this forum and we helped each other. She was 4 weeks ahead of me so gave me advice on creams to use etc. We are still friends today. She also had great news. It’s a journey but you will get through it . Jackie x

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Hello!
So sorry to hear this - I was exactly the same - all smears were clear and never had HPV. Smears only test for HPV now not cancerous cells unfortunately!
I went to have an ectropion and then they did a biopsy- I was stage 2B- I’m unsure if you’re on Instagram but feel free to follow my story my_cervical_cancer_journey

I have 3 boys and was scared stiff- however waiting is the hard part for everything! Once you know what stage you are and have a plan it helps! Any questions please don’t hesitate to ask! Xxx

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Hi Leahlouise,

I can definitely relate to those feelings of anger you have - I was/am exactly the same. We are told that if we go for our smears and see the doctor about bleeding then we can ‘avoid’ cc but - in some cases - we can’t.

I was diagnosed 10 weeks ago and - like you - had the agony of waiting for the results of the scans etc. I also have young children (two daughters aged 10 and 7). Once you have a stage and treatment plan, it does give you something to focus on (I have my hysterectomy tomorrow) but you’ll still have those ‘yo yo’ emotions.

Please be kind to yourself. Please don’t punch those who keep telling you that ‘you’ll be fine’ (I definitely know that feeling) and do try to focus on the present rather than the ‘what ifs’. This was the best advice that someone gave me. Also, reach out to your Macmillan nurse - mine has been amazing. I hate talking on the phone so I just email her and she always supports me.

Good luck and keep us posted - we’re Teal Sisters and in this together. Xx

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Do you mind me asking why they took a biopsy? I have an ectropican which they offered to burn off but they didn’t take a biopsy as no abnormal cells were seen. I’ve had the ectropican for as long as I can remember.

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I am mearly speculating and could be wrong as the whole experiencing was quiet frightening as when they tried to remove if I bled so heavily it was a panic situation for everyone. I don’t actually know how they removed what they said was the ectropion I didn’t feel anything but they took it away and said if needed to be biopsied. Part of me wonders if they knew at the point of removing it that it wasn’t actually an ectropion and that’s what led to them biopsying it. However since the removal I have had no bleeding no discomfort. Which I feel is positive and my consultant agreed.

Lots of people have ectropions I think they are completely normal. However cancer was detected in what they removed from me. At my next appointment I will ask my consultant more questions and can let you know if that helps xx

Oh GGR814, good luck for tomorrow you will be in my thoughts all day! How are you feeling about it?

Thank you for all your kind words, your mind is a scary place and you can’t help but go to the worst possible place but I got through the whole of yesterday without crying once and I feel so much more positive today.

There are so many amazing and courageous women on the site with stories which inspire hope. That has made me feel alot better xx

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Hi

I was diagnosed a couple of weeks ago. I have been told it’s a grade 1 tumour high up in the cervical canal. I have had mri and ct scan which showed 4cm tumour which is contained within the cervix. I am having a pet scan on Wednesday to see if there is enough of a margin to do a hysterectomy if not it will be chemo and radiation. Overall physically I am fine, mentally a bit bewildered any help or advice would be greatly appreciated.

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Today, I’m feeling good and ready for what tomorrow throws at me! I feel like tomorrow will be the beginning of the end of all this and I can focus on putting it behind me and looking to the future.

Remember, it’s okay to cry and it’s okay to laugh about it too! Keep the strength, sister.xxxxx

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Hi there. Just wanted to say to everyone, I have been there and done it and feel all of your emotions. I was in that place and terrified and rest assured, it doesn’t last that long. Once you know a way out you can focus and see the light at the end of the tunnel. It’s surreal and scary but everyone on here can relate to your pain.

The best advice I would have given myself then, would be to give yourself some love. Do something for you while you wait, either for treatment or a diagnosis. You are what is important, and you will be well xxx

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