Hi there, I am new to this page and am desperately seeking some advice around my recent Cone biopsy results. I had an abnormal pap smeal reaults in Feb and went for a Biopsy and coloscophy in March which showed CIN 3, I went for a LEETZ in April which resulted in Stage 1a1 and went for a Cone Biopsy and DNC 2 weeks ago.
I have been left terribly confused after being given my results of my Cone Biopsy over the phone by a nurse yesterday.
The nurse called and read out my pathodology results, which are shown below, which note no residual malignancy in Cone Biopsy and CIN 1 and HPV completely excised. Then I was shocked to hear the recommendation for a hysterectomy recommended!
She said results were good but the hysterectomy was recommended by the Tumor Board at the hospital. The extract below is from the letter which was dictated by the Gynacologist Oncologist Dr who has been treating me. So I know it's not just the nurse saying it. I am so terribly confused as he had said before the Cone Biopsy that it was very early stages (1a1) and there would be options to allow me to have children. (I am 32)
Can anyone provide advice on these results. Does it mean a hysterectomy is recommended later on in my life or right away?
Indication for procedure:
30/05/17 EUA, Cone Biopsy, Cystoscopy, Sigmoidoscopy, Staging.
no residual malignancy in cone biopsy, but residual dysplasia.
A. Cone biopsy cervix: FOCAL CIN 1 and HPV, completely excised.
No residual malignancy.
B. Curettings: Late secretory endometrium.
Thank you for your help.
These are the results from the LEETZ which makes notes of margins etc.
Cervical CIN3 with foci of malignancy:
LLETZ: High grade epithelial abnormality (CIN 3 and early invasive SCC)
- CIN 3 at least 10mm diameter
- Invasive foci up to 0.5mm depth, largest 0.4mm lateral extent
- No LVSI identified
- CIN 3 at one end of LLETZ, margins otherwise >3mm
- Invasive carcinoma 4.5 from closest (ectocervical) margin.
Is it because there are high grade cells left behind? Can you ask them to refer you for a trachelectomy instead? This means they remove your cervix and you can still have babies. x
I was diagnosed with 1b2 adenocarcinoma on the 10th may so I'm quite new on here . I probably wont be able to help you but I'm sure there's plenty of women on here that can give you plenty of advice and reassurance.i was called in for an appointment with my consultant about my results , where I could ask questions and also had support from a Macmillan nurse who was also in the room after my diagnosis she took me in another room offering support which I did find comforting. I would find that all to confusing being told over the phone I would make an appointment with your consultant and he could explain it in more simpler terms .mine also went to a multidisciplinary team where a radical hysterectomy was decided. 10 days later I had a MRI , good news as they couldn't see any evidence that it had spread. My hysterectomy is booked for 27th June which is better for me as I can still go on holiday on the 12th June , then I can face this journey when I come back , 2 weeks after my operation I will go back for results this will decide weather I need chemo and radiotherapy . I understand that a few women on here have had something similar to a hysterectomy and are able to still have children. ( Sorry I forgot what it's called ) let me know how things go , im sure someone will be along very soon x
Hi GillyPPP, based on the results of the Cone Biopsy I thought they had removed all malignancy. But I am confused. Having read through various posts on here I'm going to ask about getting an MRI (lots of women seem to have gotten it, do you know why?), Lymph node removal (when is this needed) and Trachelectomy.
My Dr isn't available for an an appointment until the end of this mornth but I cannot last that long. I need to know why he has recommended the hysterectomy. It just seems so drastic. So many awful thoughts going through my head this past few days.
Hi Lisamf, thank you for your message. The nurse did say that the recommendation was from the tumor team at the hospital, so similar to your situation in that it was been reviewed at high level. I just don't know if they have considered my age and that I don't have any kids or if this is the definitive option. I will call my Dr tomorrow and try to talk to him. The soonest appointment the nurse could schedule is 30th June, but I cant last until them without more clarity.
Do you mind me askking what was the purpose of the MRI? The Dr has not noted anything about and MRI to me. Will it provide more insight than the LLETZ and the Cone Biopsy? The Trachelectomy is the alternative procedure. He hasn't mentioned that as an option to me either.
Thank you for your message. It really helps to talk to people going through the same thing. x
You need to push for another meeting. I am no doctor but I think I had an MRI and CT because on the bit of cervix they removed I did not have clear margins. That is; a good amount of healthy tissue at the edges of the sample. So if the cancer is at the edges, then there could be more of it in me. IF you had clear margins then it may be that they know the cancerous tumour has all been removed so no need to check for spread. BUT please ask your consultant as this is my guess work.
I suspect that that the reason they are saying to have further treatment is because if one microscopic cell has been left behind then it will grow again. So in a sense they need to give aggressive treatment to absolutely nail it. If I didn't want more children I would without a doubt have a full hysterectomy. If you want children in the future then you MUST make this clear as it sounds like you'd be a good candidate for a trachelectomy. If you don't, then you need to understand from your consultant all the scientific reasons and rationale behind the need for a hysterectomy.
Hope this helps, be the annoying person that rings up all the time (politely lol!) asking for answers and an appointment. This is your health and future so you need to push for answers.
Yours is a similar story to mine - I had a cone biopsy in April after being staged 1a1. The confirmed no residual cancer and clean edges. I've been told I will have a hysterectomy after I've 'completed my family'. Basically, as we've had cancerous cells once, we're 8 times more likely to get them again. If we remove our cervix entirely then the risk is removed.
I would check if they mean for you to have the hysterectomy after you've had children.
Hope this helps!
Hi. I am new to this, so not sure if I'm doing this right :) Just curious. Do you know what type of hpv you have? There are some high risk types. Once you have hpv, it usually can't be removed from any procedure. However, some people who have a strong immune system can eventually fight it off.
I had an abnormal pap in April 2017, one stage below cancer is what I was told and high risk hpv. Colposcopy end of April showing mild to moderate dysplasia. Leep in May showing no clear margins with all cancer except invasive. Meaning highest was cin3. Cone biopsy June 27. Dr called said he wanted to talk to me that it was abnormal. Currently having to wait a week to find out exact results. Next step is hysterectomy.
Due to my high risk hpv, hysterectomy was recommended and because I am done having babies, I believe this is the best for me. Also cc runs in my family.
Seeing your post showing your biopsy was cin3, then LEETZ 1a1, then cone biopsy cin1 gives me a little hope that my cone biopsy could be downgraded as well, just still showing some abnormalities.
Now that being said, you could get a second opinion about the hysterectomy. Some doctors do try to get you to have one even though it's not necessary. But they could be worried about yours coming back due to hpv.
Good luck with everything.