First smear at 38 - sent for colposcopy

Hi all, my first post here. I realise now how mad I’ve been but I only just went for my first smear at the age of 38 after having cervical cancer symptoms for about 2 years. I know, I feel like an idiot now.
Anyway, I got my results letter which said I have HPV and abnormal cells with no information about what type. They called me in for a Colposcopy within a week (this Thursday) and the letter said I WILL require treatment.
Obviously this shook me up big time that it’s happening so fast, that I’m seeing the lead clinician and that the possibility of cancer is very real.
At first I cried about it but I feel calmer now, after all I cannot change what is done or go back in time and shake myself.
The one thing that is giving me hope is that I don’t have any bleeding (unless on monthly cycle) I have little stabbing pains randomly a few times a month on either side of my stomach and my periods are heavy and very painful but I am missing a few symptoms.

Hi Sam,

Really sorry to hear this is the outcome of your first smear.
On a positive though, it sounds like the screening has done its job and hopefully has picked up things early so that preventative action can be taken.
Have you had your colposcopy now? How was it?
Hope youre doing okay.

Hi Autumn,

I had the colposcopy, the clinician says he thinks it’s cancerous. It is in the glandular cells so a hysterectomy wouldn’t be the way to go.
I am having an MRI next week and should find out the results of the LLETZ biopsy too.
I’ve been doing as much research as I can on chemoradiation just in case it’s a positive for cancer. It’s a minefield of information!

Hi SamG

i can empathise about delaying getting a smear test. I hadn’t been screened for 12 years when I developed symptoms which included heavy bleeding - turned out I had stage 2A1 squamous cell cc. I’m sorry to hear your clinician suspects cancer.

I was diagnosed in 2017 and my treatment included chemo-radiotherapy. My clinical nurse specialist (CNS) recommended this website and Macmillan as reliable sources of information - see link below. We always suggest on this forum not to Google too much as it can often confuse and scare. I hope all goes as well as possible for you.

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/radiotherapy-for-cervical-cancer

x

Hi Jazza,

Can I ask if you have suffered any lasting side effects from the chemo? That’s my biggest concern.

Hi SamG,

Sorry to hear you’ve recently been diagnosed with CC. I hadn’t been for a smear for about 15 years when I was diagnosed. The only symptom I had was a watery discharge. Like you my cancer was the glandular type and the tumour was found at the entrance to the womb. When i went for my colposcopy the doctor said my cervix was totally healthy and the iodine test showed no abnormal cells as the tumour was much higher up and she said it would have been very unlikely to have been picked up by a smear.
I was staged at 2b and went on to have 5 chemo 28 radiotherapy and 3 brachytherapy sessions. I found the treatment very doable just a bit of heartburn and pretty tired at the end. I finished treatment in September 21, returned to work in the December i have been very lucky so far with side effects feel more or less the same as i did before treatment.
It really is a lottery some women have a terrrible time during and after treatment and others seem to be fine no idea why.
Hopefully you’ll be fine, just it one day at time, any questions give me a shout.
Take care xx

Thanks AMF,

I am in limbo at the moment waiting to find out for certain, it’s glandular so more difficult to treat according to my doctor. I am currently researching Immunotherapy as an option but it seems its very dependant on how the cancer is made up (it’s pathology I think its called). I’m making a list of questions to ask.
It’s so good to hear that you didn’t have bad side effects, damaging my body is my biggest concern with chemo radiation.

Hi SamG

My chemo consisted of 6 sessions of Cisplatin. I don’t think it caused any long term side effects although I wonder sometimes if I have slight neuropathy in my fingers but it doesn’t bother me much. My oncologist advised me that the purpose of the chemo was to enhance the effects of the external radiotherapy (25 sessions).

The most significant long term side effect of my treatment is lymphoedema which is quite debilitating for me. It was caused by the surgical removal of my pelvic lymph nodes plus subsequent damage to my pelvic lymph vessels caused by the radiotherapy.

Hi Jazza,

Sorry to hear that, will it always be that way or can it improve with time?

Hi SamG

Lymphoedema is a progressive disease/condition and, as medicine stands at the moment, it is not cureable. There are a couple of reconstructive surgeries (available privately) which can possibly help a lot but unfortunately I wasn’t suitable for treatment. Not everyone who has treatment for cc ends up with lymphoedema but it seems a significant minority will get it to a greater or lesser extent.

At the first sign of swelling due to lymphoedema it’s important to get referred for treatment at a lymphoedema clinic in order to prevent it getting worse. I need to wear a made to measure compression stocking plus compression toe caps every day, from when I get up to when I go to bed, otherwise my swelling soon increases and it gets very uncomfortable.

x

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Hi Jazza,

I’m sorry to hear that, I hope something will be available in the near future that can help!

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Just had a call from the hospital asking me to come in at 1 for results of biopsy, in floods of tears already. Wish me luck.

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Hi Sam good luck with the results. Thinking about you xx

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It’s all ok, just breathe…will you be taking anyone with? Thinking of you xxx

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My mum and husband are coming with me, my husband is finding this harder than any of us. I’ve gone a bit numb now, feel ready to find out either way. I’m so lucky to have good support I can’t imagine what this must be like if you don’t have close family surrounding you.

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It’s cancer, consultant thinks stage 1 or 2 but I have to have MRI, CAT and PET scans to confirm stage.
I’m being referred to the oncology unit.

Sorry to hear that Sam. Hope you can get your referrals through quickly and find out what your treatment is.

Hi Sam

I am new to this site and just starting my story and it’s nothing like yours ! But I read your post and was just wondering how you was and how you are getting on ?

Xxxx

Hi Rach,

Thanks for asking xx

I am stage 3b, it’s wrapped around my left ureter, in my left ovary and Fallopian tube, and also in a couple of lymph nodes. I’ve had a stent put in my ureter to take some pressure off my kidney.
I have my planning appointment Monday, then I start 5 weeks of radiation daily with chemo on Wednesdays. Then 2 sessions of Brachytherapy at the end.
It’s been a lot, but I have support from my amazing friends and family and I’m muddling through, one step at a time.
What’s been your journey so far? X

Oh Sam you poor thing you seem very positive which is great and it’s always great to have friends and family for support .

My journey nothing compared to yours ! I think I am just being paranoid! I have had HPV positive test 12 months ago and just had second smear twelve months later and tested positive again ! So they have booked me a colposcopy.

I have hsv -2 and now HPV and I am being told it’s not great to have the two .