Waiting to see if I need a historectomy and driving myself mad

So I was recently diagnosed with early stage cancer stage 1a1,I had a cone biopsy on oct4th to see how deep the cancer was and if I would need further treatment. On saturday I had a message in my patient portal for an appointment on November 9th. This just seems so far away, I dont really feel I was given much informatin and dont really know what to expect. I know I am very lucky that my cancer is in such an early stage. I just want to be able to prepare for what comes next. What if they say I dont need further treatment and then the cancer comes back.

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Hi Lucy, no advice but just wanted to say I am in a very similar situation. I was at the start of October that I had stage 1a1 and the next day I was back in for another LLETZ procedure. Now it’s just a waiting game to see if they got clear margins. If there is any doubt then it’s a hysterectomy.

A bit like you, I feel really mixed - I’m super relieved that it’s been caught so early, anxious at the results and then guilty for being upset. I’m not sure there is a right way to feel.

My consultant was great and reassured me that even if it’s goods news, then I will be staying under her care with regular check ups for quite some time. Think she said 3 month check ups for a year then 6 month checks for 3 years. So they will keep a close eye on our cervix!!
Really hope you get good news when you next go to see your consultant. I

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Thats good to know that we will be closely watched. Maybe my consultant told me this and I didnt fully take it in :rofl: he seemed to mainly focus on the historectomy as I dont want more children already having a daughter and 2 step children. I just think its the waiting that is so agonising, I inderstand the guilt and also feeling a bit of a fraud with it being caught so early and it being able to be dealt with quickly when there are so many others in a worse situation,also I dont really get to talk about it much as our children dont know yet and and I work on a ward with young people with mental health problems and cant talk about it there either.

Hi Lucy,
Sorry to hear you’re going through. It’s so, so tough to deal with, especially if you don’t get to talk openly very often.

I was diagnosed with stage 1a after my routine smear in January this year. Two slaughtering of my cervix later and I’m 6 months cancer free just waiting for my colposcopy and to discuss hysterectomy… But my appointment isn’t until the end of Nov. I think because of covid my hospital has had huge delays and they still haven’t gotten over it. The waiting is always the worst part.

Do your best to give yourself set times to think and talk about it, and to distract yourself at other times.

It’s a difficult heads pace to be in xx

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Hi Lemon_Lavender im glad to hear your cancer free, can I ask why they are still considering a historectomy… Im guessing as a precautionary measure? Im just wondering if I may be offered the same when I go back in November. Defo the waiting is the worst part :rofl: I like to know all the facts.

Girls! In same situation… diagnosed 1a1 following lletz on 5/10, got appointment with oncologist on 28/10 to discuss options. Cancer nurses rang me yesterday and basically said as I’m 37 then likely hysterectomy! I feel sick. Can’t stop crying. Greatful that so far it appears early but I was also told they were pre cancer cells not cancer cells so I’m losing confidence

At the time they were talking about a hysterectomy far sooner as a precautionary measure as I don’t want any more children and I’m over 35. And I was expecting an appointment for surgery (so was my Macmillan nurse), and instead I got a letter saying we will see you for colposcopy in 6 months. My Macmillan nurse looked into it and due to covid as it’s more to prevent reoccurrence, rather than it being present right now, it’s not prioritised. I can completely understand and I wouldn’t ever want to take the place of someone who is in desperate need. I think my mental health will improve knowing its gone and also the stabbing pains in my cervix will hopefully go too, as sometimes they jolt me, which isn’t good when I’m in public haha.

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Hi, its awful isnt it. I went for the loop therapy for precancer cells and then thats when i found out there was also cancer. Im 38 so will also probably be offered the historectomy which I personally think is the best option for me, I will find out on November the 9th. Im very thankful its curable but its still really scary.

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Sending lots of love. It’s scary but we can do this! Think my biggest fear is there is something somewhere else

Yeah i keep thinking what if they have found more deeper with the cone biopsy… Sending lots of love too x

Hope your appointment went well today Lucy. You gave been in my thoughts xx

Hope today went ok! My results are due back in this week after my second lletz so my anxiety levels have gone through the roof.

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Hi thanks Lemon lavender and K8_broom for remembering my appointment! So im going to be having a total hysterectomy via kehole surgery which to be honest is ehat I really wanted so im relived. They did get all the cancer but there are still cell changes and the virus is still present all in all its a good result. I now jist have to eait until the new year as my cervix needs to heal before they can operate. I hope your both doing well and K8_broom good luck this week xx

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Surrounding you with love Lucy. Hope time is gentle on you xx

Glad you it’s what you wanted - and roll on the new year so you can get your op and recover!! We’ll be thinking of you and wishing you a speedy recovery. Still no results here so I am going to forget it now and enjoy the weekend and think about it next week!

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Fingers crossed for you results early next week :blush: will be thinking of you xxx

Hello everyone,
Everything mentioned in this thread is applicable to me. I had 3 LLETS procedures. I was waiting for my smear test result when on the 3 November I was told I have micro invasion and it is not better but worse then they thought.
I am going to discuss hysterectomy tomorrow 15 November. I am not sure how I feel about taking ovaries out. What kind of hysterectomy are you going for? It would be good to hear your thoughts as no one can guarantee HPV will be gone for good.
They seem to be ok to do it through the keyhole surgery. Whatever it is I hope it can be done soon as I am getting very nervous.
Love to all of you, thanks. Tanya

Hi Tanyar
Its horrible isnt it, especially all the waiting. Im going to go for the hysterectomy which will be keyhole and there taking uterus tubes and cervix leaving my overies. I had my meeting on the 9th November and they said I would be added to the waiting list but it wouldnt ne until the new year. I was glad they offered the hysterectomy as i dont want the worry of a reoccurrence but at the same rime im now very scared thinking about the recovery process xx

Thank you for your message, Lucy. It’s greatly appreciated.
I was told 6-8 weeks wait but it’s probably different for hospitals. My surgeon seemed to stress the point that we won’t know about the HPV in future. I know it is easier to keep the ovaries in terms of adjustment after/recovery but I get a sense he doesn’t want any chances taken and wants to have a full removal. Although I am 49, I do want to keep what I can )). I wonder if it is possible to check if ovaries are healthy and no changes there and keep them.? Or one of them.?
I will know more tomorrow, I guess and will share here xx

I also have hpv but i stupidly just thought it would go when my cervix goes? My surgeon hasnt mentioned anything about it… Im 38 so maybe that is why… Let me know how you get on tomorrow. I aslo have to wait for my cervix to heal befor my op as ive had biopsies done xx