Cone Biopsy

Hi all,

 

I came across this forum in my search for informaction regarding a cone biopsy. I am 28 years old and have had my second smear of my life in October this year which to my surprise came back abnormal so was referred for a colposcopy by the Nhs. The waiting time for this was around 4-5 weeks and on the letter it said I had severe dyskariosis which panicked me to no end, not to mention that I was advised I would be seen by a nurse for my colposcopy. Therefore I took matters into my own hands and decided to go see a private consultant. She very kindly explained the situation to me and did the colposcopy which I was able to watch on a monitor and she explained each step of the way. She said that my cervix looked perfectly normal but she wanted to repeat the smear and also test me for HPV and was advised to come back in two weeks for results. So two weeks later I went and she reassured me that I do not have cancer but I tested positive for HPV 16,31,52,57 and also RNA positive which she explained means that there is a risk of these cells becoming cancerous in the future. So she advised that she wants to perform a small operation under general anaesthetic to remove the affected cells. This is a cone biopsy to my understanding. I am booked in to have the surgery in January and although I am convinced this is the best course of action I do have some concerns (having watched some gory YouTube videos on the procedure!). If any of you have had this done could you please let me know what your experience has been like, how long did the general anaesthetic last for, was there any pain afterwards and what were the side effects? I know it is individual to every woman but would feel much better knowing what to expect. I am a bit reluctant about going under general anesthetic but at the same time I don't know if I could bear having this done awake. 

I would be grateful for any input. Thank you for reading this

Hi there, if i was you i would be going straight back to my GP and ask for referral through NHS. They should NOT NOT NOT be doing a cone biopsy if you dont have abnormal cells/CGIN found on your colposcopy (you said she said it looks healthy) etc. HPV is carried by 80% of the population. They shouldnt do a cone for a healthy normal cervix. plz go and speak to your GP. x

If i have misunderstood then many apologise, i would still prefer NHS route. Did they say y cone and not lletz?

Thank you for your reply September2013. I do have abnormal cells, this is what the initial NHS smear confirmed (severe dyskiarosis) and the consultant repeated the smear although it was only 4 weeks apart so she said we cannot trust it (second results came back as moderate dyskiarosis). The colposcopy looked normal but she said it is possible for the abnormal cells to be deeper than can be seen on a normal colposcopy, hence why she did the HPV test which confirmed I have the highest risk strands of HPV + RNA positive (another bad sign) therefore she wants to do the cone biopsy. This consultant was recommended to me as she specializes in abnormal smears and cervical cancers so I do not doubt her medical expertise. I only wish to know more about the procedure itself. I was made aware that it could pose a risk to future pregnancy this procedure but I for one do not want childrem so am ok with that, I just am a bit apprehensive of the idea of being totally put under (in case I don't wake up)...I know this might sound silly but this is my biggest fear at the moment. Sorry if this sounds trivial but am just wondering if anyone went through this before?

Hi there, I would echo what has already been said. If the results of your repeat smear showed no signs of severe abnormalities I would question the treatment offered. I have had a cone biopsy and as treatment goes its really not that bad BUT it can have huge effects on your fertility. A couple of questions before I fly off the deep end, did your consultant do a biopsy when you had your colp and was there any mention of a CIN grade on your results? As far as I am aware just testing positive for hpv does not justify such treatment.

And i echo what niki said. yes cells high up (cgin) are harder to detect and wont show on smear properly in some cases, however at colposcopy they can still biopsy the cervical canal by scraping just inside as well as pinch biopsy. So although a smear would not show accurately cgin... after ur colposcopy biopsy you would know 100% what your dealing with and then progress to treatment plan. I think the emphasis on the high risk HPV is misplaced, most of the women on here will have high risk hpv. Its your cin grade she should be focusing your treatment plan on. If you have faith in her thats great, if it was me i would be going elewhere. Also cone doesnt always have to be carried out under GA. She should of gone through your options in more depth. x

Have to agree with the other ladies that a cone seems abit rash if your colposcopy appeared ok. I'm guessing you had biospies taken to determine the grade of CIN present? Even with CIN3 the more usual & less ivasive ways of treating would be Lletz or laser which both have very very good success rates. I think we all panic ourselves with the whole HPV thing as really it's not very well known about until it affects you but again as already said above it is so so common & most of us carry it. 

Back to your questions, I recently had a trachelectomy (removal of entire cervix & some surrounding tissues) I actually found it not that bad atal.  I was off the ward for around 2 hours but over an hour of that was probably spent in recovery so I wasn't under very long atal. I had some cramping & bleeding which was eased with pain killers & a hot water bottle. I'm still bleeding abit now but that is normal. I'd expect a cone to be a faster easier recovery. 

Johanna

xxx

Thank you all so much for your replies. To answer your questions, I did not have a biopsy at all, ever. When she did the colposcopy she also did another smear, which came back as moderate cell changes _the first one came back as severe cell changes_ 

I never heard of the term CIN, what does it stand for? I was just so glad I didn't have the dreaded C word I guess I didn't really pay attention to much else. I do realise these results are as bad as they get _in terms of HPV strands and RNA_ but am just really worried about the GA. I am beginning to think that I might seek a second opinion, except this consultant is considered the best in her field so I really don't know what to do. One of my friends is a resident gynaecologist and she advised me to ask for an epidural instead of GA with this procedure. Has any of you ever had this? Both prospects are quite daunting at the moment, I really don't know what to do. My surgery is scheduled for Jan 8 

I honestly have to echo what the other ladies have said. I am not too sure why a biopsy wasn't performed at your colposcopy, as this is the usual procedure when abnormal cells are present. I am sure they would only offer a cone biopsy if it was severe and also confirmed after a biopsy. CIN is graded in 3 stages, 1 being the lowest grade and 3 being the highest. By the sounds of what you have said, yours is only 'moderate' which I would say is CIN2 and the usual procedure is to do a LLETZ. A cone biopsy does seem a bit extreme, especially as you are only 28. I'm 26 and had my first ever smear this year and had abnormal changes, also high risk HPV, but they couldn't tell me what type I had as apparently it only detects whether it's high risk? Also a bit confusing. I was referred or a colposcopy where she also said she couldn't really see anything BUT took 2 biopsies anyway just to check which came back as CIN1 and no further treatment was needed as this usually goes back to normal without treatment. However, if it progressed then I would be offered treatment. I honestly think they should have performed a biopsy to determine exactly what it is they're dealing with. I haven't really heard of anyone having a cone biopsy BEFORE actually having a biopsy done first at the colposcopy. I think you should be asking the nurse some questions regarding this hun! Doesn't sound like the norm! Best of luck anyways! Xxx

I really think you need a second opinion. A smear result is only an indication of cell changes not a diagnosis. A high grade results can actually come back as very very minor when biopsy results comes back. She can't possibly diagnose without a biopsy result. You will see there is lots of people on here who get a high grade smear result yet biospies only show a CIN1/CIN2 result which in most case would require no trestment atal! A cone biopsy is not normally used to treat CIN. Even a CIN 3 result would probably only require a Lletz or laser treatment so I really do think you need to question. A punch biopsy or even treatment should of been undertaken during your colposcopy. Without either of these its wry hard to say how she could possibly diagnose anything & then go on to offer what seems an extremely invasive type of treatment. The fact that she said your cervix appeared fine at colposcopy also rings a few alarm bells that I would question. If it appeared fine then why offer such harsh treatment? Normally any abnormal areas would be highlighted during the examination. 

I really would urge you to seek a second opinion or speak to your GP before under going any treatment. if after all this you still decide to go ahead with the cone biopsy then you can have it done under a local anathsetic. You will see most ladies on here have treatment under a LA rather than GA. 

Johanna

xxxx

Hi there

I am in agreement with the other ladies that a cone sounds very extreme......my result was high grade - but by the end of my treatment only CIN2 (very small amount removed by biopsies and CIN1 were detected and removed.....by Lletz. Why dont you ring her back and ask a few questions? Perhaps there is more to this than you realised that she neglected to tell you (position of cells?) Either way I think a second opinion may be the way to go....

As for going under GA (in case you do go ahead with this) and I had exactly the same fears as you.......I too have never been under before! As it turned out it was a lovely sleep and looking back I am so grateful I wasnt awake during the procedure.........I shook continuously through my colposcopy and biopsies! So please dont be worried at all about that - its actually quite nice - its just the fear of the unknown that makes us scared :-)

Good luck in whatever you do xx

Thanks all for your replies. A quick update : I went for a chat with my consultant today and she explained in detail why she wants to do the cone biopsy. She said that due to the fact that my RNA came back positive and i have those nasty strands of HPV, a cone biopsy will be much more effective than other treatments as it will remove a more extensive area affected. She told me that this is 97% successful unlike other treatments whos success rates are much lower and would pose the risk of the abnormal cells returning and requiring the treatment to be repeated therefore affecting the cervix more. So from my understanding, a cone biopsy would more than likely remove these cells once and for all. So I am booked in on january 8th under general anesthetic and she said i might be able to go home that same evening.

When this whole process begun I was mostly worried about the big C but now having reassured me that i do not have cancer I am just worried about the anesthetic. I know it's silly but I keep wondering if i will wake up after. I've never had surgery before in my life and although this is minor surgery it's still an operation. 

Another thing that I should mention, having read lots of posts on this site, some of you were confused about the HPV virus. Whilst it is true that most people do carry the virus, it also depends on the strains present as only certain strains go onto transform into cancer, i believe the highest risk ones are 16,18,31,52 and 56, and a few others she mentioned that i can't remember. Only 20% of women have these high risk ones, myself included which is why she said it was important to have a full hpv test as well as an RNA one. This I believe was the reason for the second smear she did during the colposcopy. Testing for the HPV is not done on the NHS, which is why most women have no idea what sort of HPV they have. I personally think it's more important to prevent than to treat which is why i'd rather have this uncomfortable procedure now rather than let it develop into cancer later, which it will inevitably in my case. Also, from this experience I think it is important to have smears more often than every 3 years and i do know that once you get diagnoised with abnormal cells you must have regular 6 monthly ones but it is frightening to think that 3 years is a long time in which a lot can happen and for someone who let's say goes in for their first smear to be told they have abnormal cells or worse i think it has a high psychological impact. When I first was told about abnormal cells this october, the receptionist at the other end of the line told me it was a matter of urgency that i went for a colposcopy not even giving an explanation why. And once they do know you have abnormal cells they give you the option of a 6 monthly check up so my question is if things can change so rapidly, within 6 months then how drastic could they change for someone who has never had a smear before and unknowingly carries high risk HPV but has to wait till the age of 25 to find out? Just some food for thought as i believe it would make more sense to have yearly smears rather than every 3 years...

Hi this is not correct. Most parts of UK test for hpv now in nhs smears. And test the hpv for which strand and if high risk you are offered colposcopy. Already told you my story via P.M. And yes mines high risk too. As is most of the women's on here due to the fact high risk hpv causes the changes And women have then found this place for support. High risk hpv is responsible for the cell changes 90% of the time. And you can carry high risk hpv it doesn't mean you will get cancer!!! Its mostly to do with your immune system. Unfortunately for me as i told u in P.M my immune system is specific antibody deficient but my case is rare. Boost your immune system and providing your cell changes aren't severe you can eliminate it on your own without intervention. Without biopsy results from colposcopy she cannot possibly know what grade you have as a smear gives an indication. This is not always correct. However you seem set on going ahead so i wish you luck. Its a harsh procedure for not knowing what your dealing with. Hpv should not be the focus. Also cone is no more higher of a success than lletz or laser. Its only cryotherapy that has a lower success rate and this isn't used on can 2 or 3. Just cin 1 in certain cases!

Sorry to jump in slightly - having high risk HPV does NOT mean you will get cancer, it just means you are at higher risk. It still doesn't mean it will cause any harm just because it's a high risk strain. I have high risk HPV and I don't think it actually matters what number strain it is, high risk is high risk. My biopsy results showed CIN1, the lowest grade of cell changes an they decided not to do any treatment as they didn't want to interfere with my cervix as CIN1 has a high % rate of returning to normal without treatment. They referred me back for another smear in 12 months time. If they had offered me a cone biopsy I would have refused, UNLESS it was absolutely necessary, but I think it sounds slightly drastic that your consultant has offered such a procedure when she is not even sure of the grade you are at, it could be the lowest grade? In which the treatment wouldn't even be needed. You know your own body and if that is what you have chose to do then I wish you all the best with it! Don't be afraid, I am sure it will be over quickly and it will just be like falling asleep for a bit :) good luck. X