Hi, today I went to see my consultant following a Lletz at the end of October, apparently I have have high grade and low grade cgin which was close to the edges of the sample taken. I am being offered another Lletz with follow up smears at the colp. clinic, but am also being offered a hysterectomy. I am 41 and have three children, I don’t plan on having anymore. I am just not sure what to do for the best, a part of me thinks just take it all away, I don’t need it and won’t then need to worry, the other part thinks my next Lletz could be clear so I may be jumping the gun.
I just wondered when any of you have been offered the same options what you decided and why. All help appreciated, I think it would be useful to me in helping me to make my decision.
I'm familiar with a lot of the terms but not sure what cgin is?
You say you could be jmping the gun if you accept hysterectomy and everything could come back clear. BUT. it might not. Obviously I want you to think positively and chances are things WILL be clear in 6 months. But a hysterectomy would hopefully prevent cancer further down the line.
I'm 34. Also have 3 children. And I don't want anymore (not that I'm in a relationship to have any..... ) so if I was offered one I would take it myself. I have history of borderline cancer cells. And am going through it again now. And my mam had cervical cancer stage 2b. So if I get a choice I know what I will opt for.
Plus. No more periods! ;-)
All the best xx
Hi Carom :)
I was offered a second LLETZ but told that women with my stage usually have a hysterectomy.
I decided on LLETZ and the second LLETZ came back clear of cancer and abnormal cells so it worked :)
I decided on the LLETZ as I'm 25 with no children so thought it was worth trying first but I think if I was in your position of having children already and not wanting to have any more, I would go for the hysterectomy.
Good luck X
Hi Carom , I have been in your position and although I'm a couple of years older and my family is complete , I opted for a second and then third lletz ( which now means I have pretty much cervix left) My thoughts were that a hysterectomy was a major operation which I wanted to avoid if possible. The results of my third lletz came through a few days ago and I'm all clear so it was the right decision for me.
Hi Kailoe, many thanks for your reply, I really hope you get your results through soon, how is your Mam now? Your thoughts and advice are so helpful thank you, i find it hard to decide what to have for dinner usually, so something as big as this is much more difficult! It's nice to hear the thoughts of people who understand the situation first hand, it's difficult because I don't want to go through something which may be unnecessary, but then there is always a risk. I read on another post that there was some research saying that in tests 50% of hysterectomy samples showed cgin (this means the cell changes are glandular, so further into the tissue as far as I am aware) further up the cervix and past the tissue which would have been taken through a further Lletz, therefore may not have been detected through the regular screening, this is what worries me, being a mum I just want to do the right thing for my children really.
Hi Jennyyy, thank you so much for taking the time to reply. It sounds as though you have been through a really worrying time. It's great that your results from the last Llezt were clear, it makes perfect sense for you to have opted for this as you are so young still. I see you are waiting a lymph node removal, I really wish you all the best with this, will you need to have further follow up treatment? x
Hi inch, thank you so much for your comment. I keep swaying and so it is really great and helpful to hear from people who have had the same or similar experiences, I don't think really anyone knows what they would decide until faced with the situation. My consultant is lovely, and has given me time to think and decide. I am so glad your third Lletz has come back all clear, you must feel so relieved. I have been told that they would only offer me one more, and I know if that came back positive the decision would be made for me. Did you find you were worried about what could be happening further up? I am not sure what dyskaryosis is, but I have been told that because I have high grade cgin this is deeper into the tissue and there are no absolute guarantees that changes further up would be detected, this is what is making me consider the option of hysterectom. I know it's a big op, but I will be given keyhole surgery so there is a quicker recovery time and they will leave my ovaries in, so menopause may not happen quite as quickly as if removed.
Hi Carom :)
It's no problem :)
Whether I'll need further treatment depends on the results from the lymph nodes. If they're clear of cancer, I will just need regular check ups but if it's spread to them, I'll need radiotherapy.
It's good that your consultant is giving you time to decide which treatment to go for :)
Hi Carom, I guess I'm not a worrier by nature and i researched the subject very well so i figured that if I was being offered the choice of a 3rd lletz or a hysterectomy then the doctors must be fairly sure that the lletz would treat the cgin. I was made fully aware that if the sample showed any cgin then my only option would be a hysterectomy. It's probably worth pointing out though that the last lletz was fairly extensive so I have nothing left . I know I'm going to be monitored closely and samples taken regularly so if there are any further changes then clearly I'll have the hysterectomy. My doctor was quite keen on hysterectomy but I think that was because I was also being treated for long lasting periods and her view was that the operation would resolve both.
Its a difficult decision and possibly one which will take you some time to reach but I'm happy to share more details if that helps :-)
Hi Inch, thank you so much for your reply. What you say makes perfect sense, you are right in pointing out that the doctors wouldn't be offering the next Lletz if they didn't think it would have every chance of success. I am not usually someone who worries about such things and so I guess my indecision and worry has taken me by surprise. I am going to phone my colposcopy nurse back next week with some further questions; in a way it is much harder being given options than if the choices are made for you. I am someone who usually likes to be well informed, I am struggling with this one really, lots of the medical research is quite tricky reading and I am struggling to find much on cgin in general really. I am not rushing myself though. I may well be back in touch, if you don't mind though? What's so great about this site is that everyone knows how it feels, something which is really comforting.
Hi Jennyyy, i really hope that the lymph node removal goes well and you don't have to wait long for the results, it's been a really worrying time for you. I wish you the best and hope that you are able to do lots of lovely things in the run up to 06/02 to take you mind off it. thank you for your support, and do let us know how you get on xx
Hi Carom, please feel free to get in touch anytime. While it's great to have the choice there is always the worry you've opted for wrong one! There isn't much info regarding cgin because it's more rare but apparently no more aggressive than cin, just a bit more difficult to dectect. At the time I had my 3rd lletz I was also booked in for a uterine ablation because I had long lasting periods. My doctor told me I couldn't have that operation as sometimes the scarring from it can extend into the upper part of the cervix therefore making any abnormal cells virtually impossible to detect. Her view was that a hysterectomy would solve both issues but was quite happy with my choice of the lletz. She is a lovely doctor and I think had she thought the lletz wasnt a good option she wouldn't have mentioned it. I asked her about a cone instaed of a lletz and she said that as lletz was so good it was rare to do cones now ( perhaps that's just in my area) and in fact she hadn't done one in 10 years and didn't recommend it.
In some ways I think i have probably just put off the enevitable but as my last Lletz sample was totally clear I feel I've bought myself a bit more time. I have however started taking a number of supplements which claim to support cellular health so I'm covering most bases !
Hi Inch, I had been wondering why I hadn't been offered a cone so that's really helpful thank you, it seems Lletz is probably the most common thing to use, it was one of the questions I was going to ask my colposcopy nurse next week, so thank you! I have been reading about hysterectomies, I am pretty squeamish, but I just want to be as informed as I can. I do think this is my most likely choice at this stage but am going to give myself to the end of next week to decide.
I would be really interested to know what supplements you have been taking, I have also been told that frankincense is good for cell renewal, my friend has made me up an oil blend for my skin. I am trying to read about what foods are good for hormones too and apparently kimchi and sauerkraut are supposed to be really beneficial to our health! This has really made me think about lots of aspects of my life, which is a positive I guess! At least you now have a good few months to hopefully put this to the back of your mind until your next check up, although I am guessing your periods are pretty hard going! X
Hi Carom, I've sent you a pm
I'm also 41 with have tested for CIN 3 and high grade dyskarsis consistently for the last 3 almost 4 years. I've had Lletz, loop and two cone biopsies before having a cone biopsy last Feb. Its been a never ending cycle of tests, waiting around and annual treatment and was a final option. My consultant was very good at ensuring I was happy with the decision as I don't have kids and we reviewed it several times before going ahead.
For me it was still the right decision as I'm still showing abnormal cells but I'm hoping the next test in March is clear as it could be a false positive as I'm also experiencing healing problems following the operation.
Keyhole surgery was relatively quick and the overall recovery good. I kept my ovaries as I didn't fancy menopause plus there seemed to be more pros for keeping them.
All has been good until June last year as I've had light bleeding more or less since which is found to something called granulation, where it's not healing fully.
So I guess I'm saying it's not a decision to be taken lightly but for me the fear of what could happen outweighed the risk of not. Like any treatment it has it down moments but for me wasn't as bad as my mind thought it would be.
Still recovering but feeling more positive.
Good luck with you decision x
Hi thank you for your comment, so sorry I have only just seen it! I decided on a hysterectomy in the end, and am due to have the op next Friday. I am feeling v nervous and have even swayed between thinking I have made the wrong decision and back again. But I know deep down that I considered my options carefully and the decision I made was the right one for me. I am sorry to hear that you still have abnormal cells and hope the tests in March will all be clear and you can move on. It's all so tiring isn't it? I have opted to keep my ovaries too and hoping that with healthy eating and supplements I can keep the menopause at bay, and know I am lucky to have that option. please keep me posted, sending lots of good thoughts your way. Caroline xx
The worry of the surgery was far worse than the actual thing for me and I just felt relived in the end. I'm one year to the day today and glad I had it done. Thankfully no major issues although I am going in over the next few weeks for a bit of laser treatment for the granulation but hopefully that will be it. They are also doing another biopsy at the same time just to double check.
I actually feel calmer at the moment and less worried about the next smear but that is also due to my results on New Year's Eve for the biopsy. Basically that came back clear and confirmed granulation....such a relief!
My top tips:
- Make sure you take some big high waisted knickers so they don't rub or irritate the wounds.
- I wore a nightie so I didn't have to deal with pyjama bottoms
- Drink plenty of mint tea to get your bodily functions going again
- Don't worry about shouting for the nurses or your family to help get up out of bed, this was by far the hardest most painful thing for the first few weeks, almost comedy on some occasions!
- Take it really, really easy and build up your mobility slowly. I was like a snail the first few week and just did a few more steps each day.
- Take all the help you can get from family and friends and get plenty of box sets in.
I hope it goes well for you and let us know how you get on.
If you have any questions just ask.
Thank you so much for your reply, the tips will really help and it is good to know that things do not seem quite as bad as I am perhaps making them out to be in the end, I guess it's fear of the unknown sometimes. Today I have been to the library for talking books and am going to get big pants and nighties before my pre op on Tuesday and am going to treat myself to a nice cushion, which I have read as being beneficai. I am looking forward to watching some good box sets and will stack up on the peppermint tea!
I am glad to hear you are feeling quite relaxed about the next steps, all the best for your laser treatment and biopsy, please keep me updated on how you get on. This website is a great source of solidarity and it is good to have other lovely women sharing the journey. Your messages have certainly helped to put some of my worries into perspective, so thank you. Caroline X
I wish you all the best on Tuesday Caroline. You sound very well prepared, just take a few deep breaths if you start stressing.
Thank you Jackie, I had to do that in the car today! work is quite stressful as I get ready to go off for such a time. In a way it will be nice to have the excuse to relax for a few weeks! Caroline x