I've been stalking this forum since this whole nightmare started last month but I've only just been able to post now after being diagnosed last week. I actually found out mine was cancerous because I read it on my online NHS record whilst trying to order a repeat prescription! Saw on a Sunday morning it said 'Malignant tumour of the Cervix' and couldn't speak to anyone to find out what was happening for a most 36 hours!
They have said it's stage 1a1 which I'm obviously very relieved about, but that doesn't take away the panic that these cells are there in the first place. I have an immune system disorder called Lupus and take immunosuppressant and I've since read that long term use of these makes me twice as likely to get CC. I had a brief chat with the consultant and she mentioned the weakened immune system wouod have a big part to play, especially in terms of recurrence. I'm due to see the oncologist in a couple of weeks so they will talk me through treatment then, but having previously had a LLETZ 4 weeks ago but with unclear margin, there is a decision I need to make about whether to start with having another one of those, or do I just opt straight for a hysterectomy.
Has anyone had a hysterectomy for such a low stage? It seems quite extreme...
Hope you're all okay. I feel like I've read almost everyone's stories so feel horrid here moaning about my tiny minuscule cancer when some of you are going through hell of a different kind x
Sorry to hear of your recent diagnosis, it is a shock! i was diagnosed 1a1 Adenocarcinoma about a month ago. As treatment, all I required was a cone biopsy. They sent me for this because my colposcopy biopsy came back as invasive malignancy. My cone biopsy removed everything and I did not need further treatment. I had an MRI which came back clear. Now I need 3 monthly check ups for the next year, then to 6 monthly and an MRI each year for the next 3 years.
i know some women do have hysterectomies god stage 1a1 but it does depend on a few factors. If you are higher risk of reccurance they will take that Into account. I have not had children yet and my oncologist said the chance of reccurance is very low.
In saying that, I think I'll always be anxious about it now and as soon as I have children. I will opt for a hysterectomy.
Good luck with everything. Don't be hard on yourself. I felt weird saying it was cancer as it was so early, but it definitely changes things when the C word is involved. It's stressful and it's a rollercoaster!
I'm like you stage 1a1 and I'm having a hysterectomy after Christmas. I think it's preventative as much as a trearment. Maybe because I'm past the menopause or maybe because they found adenocarcinoma which is in the glands in the cervix and harder to detect and monitor. It was a shock though and I wasn't ready for that!
You can ask the experts on this website - obviously they can't comment on your case in detail but you could ask them about how and why a hysterectomy would be indicated.
It's super scary though. I've had two LLETZ under general anaesthetic now so it's getting to be a bit routine but still this is scary but you'll be in good company! Lots of people here who've been through it who can reassure you.
And cancer is cancer! You don't have to justify or earn your reaction and your anxiety! if it's very early like mine then that's good and keep everything crossed it's going to be dealt wih quickly. But it's scary as hell till you know what's happening xxxx
I'm like you stage 1a1 and I'm having a hysterectomy after Christmas. I think it's preventative as much as a treatment. Maybe because I'm past the menopause or maybe because they found adenocarcinoma which is in the glands in the cervix and harder to detect and monitor. It was a shock though and I wasn't ready for that!
You can ask the experts on this website - obviously they can't comment on your case in detail but you could ask them about how and why a hysterectomy would be indicated.
It's super scary though. I've had two LLETZ under general anaesthetic now so it's getting to be a bit routine but still this is scary but you'll be in good company! Lots of people here who've been through it who can reassure you.
thanks for replying! How scary for you, especially not having had your family yet. I'm really pleased to hear the cone biopsy has done the job, I think that's something I can consider too.
Do you feel like you've put it to bed now or do you still think about it? Now you are cancer free, but just having to have checks? I think it's just the 'C' word that makes things so scary and big.
Cagney I feel like I know you now as I've been reading lots of your posts. I will be following your updates on your hysterectomy.
I know if I have another LLETZ (which I just can't deal with the thought as my first was incredibly difficult and unpleasant) then I will be stressed it's still there, especially as they said they didn't get it all the first time, and I'm so worried about pain (although they did mention possibly using GA if we do that again) but then also a hysterectomy seems so major for such an early cancer. I'm beating myself up over it so I'm interested to hear the experts opinion.
Have you had an MRI or anything or is it all based on biopsy results? Xx
I had a hysterectomy for adenocarcinoma and squamous cell carcinoma both in SITU after a come biopsy with positive margins (so not even your stage). I have had my babies and did not plan on having more so this felt like the right choice for me. I did not have any additional scans and post op pathology only showed remnants of the original lesion. I did feel like it was an overreaction and like I was a fraud in some ways after putting my family through the worry and taking time off work for the surgery. However, I do have comfort knowing that most likely this is the end of my story. I got lucky...so lucky and I am so blessed to have been able to cut this crap out of me and move on with life. I don't regret my choice at all. Recovery has been so easy and God willing I get to watch my girls grow up. I would do it again in a heartbeat!
Ashlinglydia it's all biopsy results with me. Haven't had any MRIs. Stage 1a1 is where the cancer cells are still microscopic though. So not sure if anything would show up?
I was shocked when the consultant said hysterectomy. Like you I thought it was a bit drastic for early stage. I wasn't totally shocked that they found cancer but shocked that they were proposing a hysterectomy for early stage.
I think because adenocarcinoma is internal and hard to monitor and because the CIN and CGIN they found were high grade so most likely to develop into cancer they must have decided the likelihood of cancer coming back was very high. I think the other cancer rhwy found was all removed in the first LLETZ so if that was it, maybe I'd be clear and that would be an end to it but the hysterectomy is because of the adenocarcinoma I think.
But I was shocked. I'm 57 and past the menopause though, so it's possibly less traumatic for me than if I was planning a family. Though it's still really hard.
But I do remember reading on the Jo's website and discovering that a hysterectomy is indicated in early stage. I think too because they've found that outcomes are significantly better for people who have open hysterectomy than keyhole that suggests to me that the surgery itself can impact on the cancer. She said it's something to do with the squeezing. So maybe it's a better option early? I don't have the medical knowledge to understand it all I'm afraid but it's definitely earth shattering.
Have they discussed treatment options with you? What the choices are and what the outcomes might be for you?
You need to know what you're facing and what your choices are. It's your body and your life. Have a read of the info here https://www.jostrust.org.uk/information/cervical-cancer/treatments/options and ask the experts. It might be that nobody can give you any different answers but you'll feel less powerless and less out of control if you feel better informed. The info gives you questions to ask as well.
Whatever happens it's early stage! So lots can happen. I hope it all works out for you. I'm happy to chat more if you need - send me a private message. I don't know much myself but it does help keep it in perspective I think talking to other people facing the same.
From my understanding, a hysterectomy is the gold standard treatment for early stage cervical cancers including 1a1 (which is the stage they initially thought mine was, so they explained this to me). I think if there are particular reasons why the woman might not want that at the time e.g. pre menopausal, wanting to start a family etc. your team would aim to offer less radical and fertility preserving treatment. From memory I think there are stories from women who have had early stage cervical cancer and had hysterectomies and other treatments such as a trachelectomy on the Jo's trust main website. Hope that is helpful and wishing you all the best for your treatment x
It's so nice to hear other people in the same boat just been diagnosed 1a 5 so super early absolutely no signs but mine is in a gland. I've had my family and I just want to make sure it can't come back so want a hysterectomy. I've had my mri today so little anxious tonight as they say they got it all with the loop but not all the precancerous cells x
I had stage 1a1 cancer. Tumour discovered at biopsy, then a lletz found more, so it was felt best to go for hysterectomy to make sure all was removed. Hysterectomy revealed even more tumours in the cervix, so was definitely the right choice.
This was two years ago, and I've just had a clear smear with no hpv, so definitely the right choice for me. It would have been different if I hadn't had children already.
just to reply to my earlier comment. I also had adenocarcinoma stage 1a1 and like I said a Cone Biopsy with clear margins. They try to preserve fertility in younger patients so if clear margins, clear MRI they are happy to just monitor closely even if it was Adenocarcinoma. My Oncologist is very experienced (I researched him ALOT) and he said he had only ever seen a recurrence in a case like mine (stage 1a1 Adenocarcinoma) once in 29 years, providing i obviously stick to my checkups which will be 3 monthly for the next year.
in saying all that, I haven't "forgotten" about it and I don't feel particularly calm about the situation. Every ache and pain I'm having I am convinced something is not right. I'm not sure I'll feel okay until I have my next colposcopy/ smear result. As soon as I have children I will opt for a hysterectomy. it's scary and I'm not sure the anxiety will ever go away, even though it was so early! jen x
Some positive stories in this thread , I'm terrified my young daughter has cgin diagnosis on coloscopy and is waiting for lletz , she has two small babies , I'm terrified about it all and how they will cope if she needs a hysterectomy. At the coloscopy they said it was a very tiny area but obviously more going on xx
