Cone Biopsy Questions

I have a cone biopsy booked for 31 October. Can anyone help me with the following questions?
How long did you stay in after the procedure? I have read it could be overnight.
How long did it take for you to feel able to go back to work? I mainly ask this as I work in a different city and travel over an hour each way so I want to know that I am sure I feel ok to go back to work as if possible I would like to avoid having to go home half way through the day etc.
How heavy was bleeding/discharge?
Were you allowed visitors after? I am very anxious about being in hospital alone.
How long did it take to get results from cone biopsy back and is this what they use to stage you?

Thank you x

Hi I had a cone biopsy after a lletz diagnosed early cancer. I had the operation in the afternoon and went home the same evening, they just removed the catheter put in during surgery and I had to pass urine was then allowed to go. I didn't have much bleeding at all after the cone. As for work i think it depends on the type of work you do, I actually had several weeks but that was due more to emotional issues and anxiety all this caused me, physically I was ok really. I would say take the week off though just to give yourself time to rest and heal. I got the results back after about 3 days I called the hospital (original lletz results took 7 weeks) and results from cone biopsy was all clear so completely healthy tissue and smears have all been clear since (nearly 2 years). Also as for visitors, yes I took my mum with me and she waited around till I was discharged and took me home. Hope this helps x

Hi Libby123

Thank you so much that is really reassuring. Yes when I found out I took some time off work not becuase of pain or anything just becuase I wasn't ready to face work emotionally. I had already been having issues at work too so that didn't help. I think the travel to and from work is adding to the anxiety and self consciousness about the bleeding etc.

The whole catheter thing freaks me out, I know I am being a wimp and women on here will have gone through much worse but I am just one of these people who like to know all the details so I can be as prepared as possible. Did it hurt? 

Can I ask if you received any written information before your cone biopsy of what to expect etc? 

How long from when you were anaethetised until you woke up?

Thanks again :)

 

Im trying to remember the details and I've got the worst memory, i couldnt feel the catheter but when it was removed it was a sharp pain and kind if a weird horrible feeling but it only lasted a few seconds, also during the surgery the doctor had struggled to stop the bleeding so they put a packing in, it's a huge bandage they put inside you to stop the bleeding from the cervix so I had to have that removed when I was awake, didn't hurt just a horrible feeling again. Because of that my surgery took a bit longer, then I woke up in recovery ward and the consultant came and spoke to me, said surgery had gone well and just explained about the bleeding but said cervix is very vascular so bleeds alot. I think I got a leaflet, just about the procedure,  aftercare like no sex, baths, tampons for 6 weeks I think x

Ok that helps, thank you so much. 

Was the bandage removed by having to put in a instrument like you get at your smear or do they pull it out like a tampon? Sorry TMI.

They mentioned lymph nodes to me as a possibility of having to be removed did they say anything to you about this? 

No the bandage was just pulled out by the nurse on the recovery ward, she was just pulling it out by hand and it went on and on, as I say didn't hurt at all just very unpleasant lol, suppose its just a very long bandage to completely pack the area and stop the bleeding, also the consultant said she'd put something on my cervix where the bleeding was coming from and that it would fall out eventually, after about 3 or 4 days this black round thing fell out (sorry tmi). This might not even happens to you it was only because my cervix wouldn't stop bleeding in theatre. My consultant said I didn't need lymph nodes removed, the cancer was squamous cell stage 1a1 and they said it hadn't spread. I was a bit nervous about not having lymph nodes checked but they said not necessary, I did have a pelvic mri scan though which came back normal x

Aw that is a huge help thanks! 

Ok I dunno what kind mine is, my Dr didn't tell me. 

When did you go for the MRI was that after the cone biopsy?

You can ask them, squamous cell is the most common type, there's adeno which I think starts in the glands higher up and a few rarer types but it does make a difference sometimes to treatment offered. I had the mri after my cone biopsy, my consultant said they don't always do them for such an early cancer but my anxiety was so bad I'd convinced myself I had it everywhere so she said she would do it for my reassurance and although it was only a pelvic one (I would have prefered full body) it did reassure me. All hospitals seem to do things differently, I've read stories on here with girls the same stage as me, some have no scans and some have them yearly afterwards, I asked my doctor about more scans and she said no its not necessary. I struggled to trust that at first and wanted constant reassurance with scans,  check ups etc but nearly 2 years on now and after each clear smear I'm so much better x

Ok I think I have had a lack of information in general to be honest. I wasn't told by the right person as they thought someone had already informed me so broke down and had to go home to be called back 2 days later and asked what questions I had. I think the Dr had tried to explain at the first app but it was literally by drawing a picture.. I feel like I have missed information somewhere along the process. This site has been the most useful source of information to be honest. I picked up a Macmillan booklet too from my local cancer care charity which was useful too. Thank you so much for answering all of my questions! Really appreciate it :)

 

You're welcome, i just read your post about being diagnosed, easier said than done I know but try not to panic, this is a very treatable cancer especially when caught early. It's just that word puts the fear of  God into us. My mum's friend is a gp and when mum told her about me she said if you're going to get cancer, cervical is one of the better ones to have! Cancer has a huge spectrum of seriousness depending on where you have it and what stage, yours sounds like its been caught early and like i say cervical is often easily treated with surgery alone like mine. When I was diagnosed the nurse called me and put her arm around me as she led me into a room with a doctor waiting for me so I knew what was coming, she also put her arm around me as she walked me out through the waiting room too so everyone there probably knew my news! This is a great forum and really helped me x

Hi

My story is very similar to Libby's but I didn't have a catheter or the bandage thing. I was asleep for about half an hour and in the hospital for about 4 hours in total. It's been the emotional aspect that I've found harder but as time passes I feel better, it really is a roller coaster and a ride I hope I won't experience again in a hurry! My period was heavier after the cone but much shorter. I had a scan before the cone which was hospital process although as Libby says some hospitals don't do them for early stage. My scan was clear although showed fibroids in the womb which are nothing to worry about and very common. Hope your procedure goes well xxx

Thank you Libby, it wasn't the best experience to be honest but at least I know now. I think it is just to fear of the unknown. 

Hi slb97 thank you for your message. I agree it is emotionally difficult even now just the worrying and what ifs. Do you know if it is the scan that determines whether you need lymph node removal or do you know if they know that by doing the cone?

Hi

I remember seeing 'no Lvsi present' on my histology report which was done on the tissue biopsy they collected during the lletz. The Lvsi stands for lymphatic vascular space invasion, in other words has it potentially spread to the lymph nodes. I think it's the biopsy report that shows this rather than the scan although scans can also be used in tandem to show spread. My research showed that stage 1a cancer has a 1 % chance of Lvsi which is probably why they don't always scan for early stage, 1b is slightly higher risk. The consultant didn't even mention lymph nodes to me. You will see a lot of girls here that had lymph nodes removed came back clear too so if you do have any removed try not to worry too much although I realise this is easier said than done.  I had to ask what my stage was so ask them if they don't mention it. It's really useful to have a list of questions to take so you or someone else can jot down the answers. Time will go quickly even if it doesn't feel like that while you're waiting and you'll soon be starting to put things behind you. When your treatment has finished you may start worrying about reoccurrence like I did.  I researched endlessly and was reassured to know that it's very rare and even if it did happen there's still lots of treatment available with excellent outcomes.  Just a quick note about work, with a cancer diagnosis you are covered by the equality act 2010 even after treatment is complete and in remission or cured. in a nutshell you are classified as disabled for the purposes of the act for life. Hopefully your work will be supportive as most are but it's worth knowing in case you get a manager that doesn't realise xx

Hi

Aw thank you so much that is really helpful. I think it helps to know the ins and outs, I am normally a very organised person so having to venture into the uknown is challenging as I always like to know all the details. I am sure everyone is the same though. 

I was worried that my immune system is not strong and that is why I got this in the first place. It is great that it is quite a treatable cancer but my worry now is that others aren't and what I can do to mimise my risk. Sometimes these things just happen I guess even to the healthiest people I just don't want to live in fear. 

My work have been really good so far, unfortunately I just don't enjoy my job so I had been applying for others so that is on hold a little now. 

I think I am more concerned about the anaesthetic than the actual cone! I have had a cold which started about 2 weeks ago and my cough just won't shift but it is mostly in the morning. I read you should inform them if you have a cold or cough as they may not be able to anaesthetise you. I may call the hosiptal on Monday and see what they say but the last thing I want is a later date for the procedure.

Thank you for your help x

I think going through all this was a huge kick up the bum for me lifestyle wise. You can do lots to boost your immune system and minimise your risk and for me it helped me mentally feeling I was doing all i could to help myself and reduce the chance of anything bad happening in the future. You can read up online lots of tips or speak to your doctor but for me I stopped smoking, stopped taking the pill, plenty of rest where possible, multivitamin including folic acid for cervical health,  garlic is meant to be anti viral among other things, drink green tea, lots of fruit and veg, minimise sugar and just basically minimise artificial stuff you put into your body and try and go back to nature as much as possible anyway,  I still eat chocolate and pizza but I try and make sure I add good things in too. I was scared of the general anaesthetic, suppose just being so vulnerable and out of control and I remember worrying I wouldn't wake up but I was just fine, they're highly skilled experts and will look after you. It's just the emotional side of things take time to heal but physically I feel no different and didn't even have pain or anything after the cone biopsy x

Hi 

Aw I had just been given folic acid before this happened so perhaps that will help. I am trying to eat less processed foods and haven't eaten crisps which I normally eat most days. I used to smoke when drinking but not all the time so I have stopped that and cut down on alcohol. What pill were you on? What research did you find about this and any possible links to cancer? I was on combined now on progrestogen only past couple years. Thank you for your help!x

I was on progesterone only but I'd also taken the morning after pill a couple of times before starting it which is obviously huge dose of hormone. The reason I stopped was because I'd been having abnormal smears for a couple of years but was only ever a mild result, I was having them 6 monthly and I went from a mild result to cancer in 6 months and the only thing I'd done differently that I could think of in that time was start taking the pill. I read things saying the pill can deplete the body of its folic acid too and also stories from women saying problems started with the pill. My consultant was open minded and said it could be connected but my gp says there's no 'proven link'. Each to their own but I just don't want anything artificial messing with my body now and I think surely artificial hormones and with the mini pill stopping periods it can't be good for you. Obviously lots of people take the pill and are fine but I feel happier not x 

Ok great, thank you for all the info. That is really helpful.

I was thinking about it but not keen on the really painful periods i used to get x

Hi

Thank you to everyone who posted. I got back from hospital last night at around 7pm, it was a long day. 

Bit of pain but feeling a lot better now that the anaesthetic has worn off. Has anyone had the blood thinning injection? Ouch!

They think I will need further treatment which I am really gutted about. I know many ladies on here have got through this so I am just hoping this is a small part of my life and I can get treated and move on. 

Hiya, I'm glad you're feeling ok, I didn't have the blood injection but they had trouble finding my vein for anaesthetic so that hurt! Sorry to hear you may need further treatment but you will be on your way to moving on in no time. It's weird because it's all consuming while you're in the throes of treatment and for a while afterwards but you do start forgetting about it for a bit longer each time. I can go through whole films or programmes without thinking about cancer now. Work has helped too although I get a bit impatient with people who whinge about small things but I still moan too lol.  Keep us posted and we're here to help and be a listening ear xx