CIN2/CIN3 with unclear margins

Hi everyone

I had my first smear last October which came back as abnormal, suspected CIN2 moderate cell changes. I went for a colposcopy and had the loop procedure to remove the cells n the biopsy was analysed.

I've since received conflicting letters from the hospital, for instance;

Letter 1 - your results are consistent with your smear, you have been adequately treated and will need a smear in 6 months at your doctors.

Phone call; I asked what my actual results were and they said it was CIN2 and my margins are clear.

Meanwhile doctor writes to them asking for more info as no histology received.

Letter 2; CIN3 present but margins were clear and next time I have an appointment, which i can now have at the colposcopy clinic rather than just a smear, I will be tested for hpv. This will be in April 13.

Letter 3 from doctors which include a copy of the histology that says CIN2 with a lot of CIN3, suspected hpv infection and margins are not clear.

What on earth am I meant to do with that?? A very close friend of mine died 2 years ago a month after her 23rd birthday from cervical cancer and she was completely let down by her doctor and the hospital.

If anyone has any suggestions about what I should do now, I'm open to all opinions please. I'm worried that I can only have the loop done so many times before they start wanting to take other things out and I'm desperate to be a mum

Thank you very much

Jen x

By Jenny1987
Reply 3691937
January 10, 2013 at 2:36 am
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Also, my results were the following, if anyone can shed any light as to what this means I'd really appreciate it!!

Sections show cervical tissue including the transformation zone displaying features of HIV infection. The squamous epithelium contains areas of cin2 and extensive areas of cin3 which extend to the endocrvical crypts. There is no evidence of cgin or invasive disease. In places, the underlying stroma displays severe superficial chronic inflammation and the epithelial stromatolites interface appears slightly irregular but there is no convincing evidence of invasion.
Areas of cin3 persist at the ectocervical margin at one end block but the endocervical margin appears to be clear of cin.
Conclusion: cervical loop excision - cin2 and extensive areas of cin3. Not completely excised.

Thank you x

By beach1
Reply 3692513
January 10, 2013 at 9:15 am
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I am so sorry you are going through this, but don't worry, you are not alone.

Remember, CIN 2 & 3 are NOT cancer, but a precursor to it. I am a tad surprised that your Gyno wants to wait 3 more months to do any treatment? I agree with you, you need to be proactive and do something.

There are many young women on this site who have cleared varying degrees of CIN naturally. Most follow the protocol of Tori Hudson, who pioneered the treatment of dysplasia naturally, which preserves a women's ability to have children. Is it work? Yes! I noticed you are in the UK, so I am unfamiliar as to how you would find a Naturopathic Physician, but you could google or try one of the Naturopathic Colleges in London. They may point you to an ND that treats HPV and does Escharotic Treatment.

Do your research on this way of treatment, since you have to make a decision that works for you. Feel free to check out my profile/past postings for the Tori Hudson protocol I am following as well, check out Antiviral, Hopeful08, Grachella, Ash24. These are just a few amazing Ladies on this site who have cleared HPV/CIN naturally.

I agree with you, you must do something, even if it's just boosting your Immune System, changing your diet or adding certain supplements. If you smoke, quit!!

Lots to think about, so I hope this helps and gives you another choice to think about.

Stay positive and proactive!!
Beach1

By mmc1294
Reply 3693563
January 10, 2013 at 2:32 pm
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With a diagnosis of CIN2/3, it is assumed that you are HPV+ (usually with a high risk strain) as HPV is the causative factor in squamous cell abnormalities (CIN), as well as glandular cell abnormalities (Adeno/AIS).

Many MD's will wait 3 months with postive margins because the area is cauterized after the LEEP procedure. In many cases, this cauterization, will destroy any remaining abnormal cells. If your pap smear is still abnormal in 3 months, it would be assumed that the abnormal cells were not destroyed and further treatment is necessary. Alternatively, you can opt for a 2nd LEEP procedure as soon as your Gyn allows. The drawback is that an additional procedure will result in additional scarring/removal of your cervix. This may not be necessary if the cauterization destroys whatever abnormal cells remain. Scarring and minimal cervix can make monitoring / future treatment more difficult. Keep in mind, this procedure does not eliminate HPV from your body and recurrent dysplasia is always possible and future treatment may be needed. As stated above, taking steps to boost your immune system will reduce the risk of recurrence by forcing HPV into dormancy.

Did your Gyn perform an ECC to check for dysplasia in your cervical canal? If not, I would definitely ask for that to be performed with your next pap smear.

By Jenny1987
Reply 3693886
January 10, 2013 at 4:22 pm
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Thank you both for your replies!

I've never heard of Tori Hudson or a naturopathic physician so will definitely look into that! It's unbelievable that so many women are all going through this. If the uk there isn't really any warnings about hpv, we have only in the past few years provided teenage girls with an hpv vaccine! Not a lot of emphasis is made about cervical cancer or the. Until I lost my friend I didn't really know anything about it!

The main thing that's worrying me is that I don't know how many times you can have the leep procedure before they start taking other things out. My boyfriend and I can't wait to start a family but we want to have a nice home ready for children. I suppose I'm worried that I might leave it too late and the doctors advise to start removing parts that I'll need!

I dont suppose you know how many leeps you can have do you?

Mmc1294, why does scarring make future treatment complicated please? I had to google Eva's I've never heard of it before, but I was speaking to my GP last night and she mentioned a brush type instrument they can used why I asked how do they know if its not already gone up the canal. I'm waiting for the gyn to call me back, they're transferring my notes to her so she'll call when she has them.

I'll ask her if I've had this done or not, I'm guessing not but thank you it's a really good suggestion. It worried me that my histology mentioned CIN3 was present in the endocervical crypts (whatever they are???) unfortunately the uk don't seem to be as good as the us at treating this.

When I speak to the gyn I'm going to ask for another colposcopy to check to see if the cells were cautorized or not, and if not then i methinks I'm going to opt for a second leap and fingers crossed they'll get it all this time. At least then we have a timeframe where we can monitor it to see if its fast developing or not.

Thank you again for your replies, it was really nice of you and I really appreciate it x

By mmc1294
Reply 3693990
January 10, 2013 at 5:03 pm
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Not sure if the scarring makes it more difficult to monitor or actually perform additionally procedures. I had 2 LEEPs and a Cone Biopsy and was told they could not perform either of these procedures again because of the scarring and minimal amount of cervix remaining.

By Jenny1987
Reply 3694157
January 10, 2013 at 6:05 pm
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What's the difference with a keep and cone biopsy and what results make them change from a leep to a cone biopsy?

What does that mean for you now if you don't mind me asking?x

By laurus
Reply 3694281 · In reply to 3694157 by Jenny1987
January 10, 2013 at 6:58 pm
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I have had both a LEEP and a cone biopsy. The LEEP (Or in the UK generally called a LLETZ) is with the electrocautery loop which shaves off tissue. The advantages to the LEEP is that it is usually easier, faster, and less painful and often is all that is needed to remove abnormal cells. The downside is that the electrocautery loop cauterizes/burns the edge of the sample, which means it can be hard to tell if the abnormal cells go right up to the edge (the margin). What they want is to get ALL the abnormal cells, so they want to see a sample of tissue with the abnormal cells in the middle and healthy cells all the way around - clear margins.

If the LEEP doesn't have clear margins, or if the abnormal cells are deeper than the LEEP can reach, the next step is a cone biopsy. The cone is done with a scalpel and takes a larger cone shaped wedge of tissue. In my case I had a large cone which removed 40 - 50% of my cervix. Luckily for me I was done having children. Obviously removing a lot of your cervix makes pregnancy more difficult, but it can still be done - many women who have had a cone need a procedure called a cerclage at the beginning of the pregnancy to help their cervix stay closed. You could do a search on past threads to see what others have done to preserve their fertility. There are a lot of options. Make sure you tell your doc that it is a high priority for you. I don't think there is really a limit on how many LEEPs you can have, its more an issue of how much tissue is removed, how much scarring there is, and how your body responds.

The thing about all different letters, though...how frustrating! You definitely need to get the doc to say which of those is right. You can ask for a copy of your pathology report and read it for yourself. Then you will have a better idea what should come next. Try not to worry too much, you've caught this early and can definitely deal with it!

By mmc1294
Reply 3694816
January 10, 2013 at 10:17 pm
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I had 2 LEEPs in 2008. In April 2012, my pap smear revealed the abnormal cells had returned - CIN3. I chose an aggressive Cone Biopsy (60+% of my cervix removed) due to my history of aggressive/recurrent dysplasia. Unfortunately I did not get clear margins with the Cone Biopsy and ultimately moved ahead with a hysterectomy due to not having any alternative treatment options. I was not comfortable with leaving any abnormal cells behind and simply having the condition monitored. Since I have no plans to have children, I felt a hysterectomy was my best course of action. In my case, listening to my gut proved to be possibly life saving as they found AIS lesions deep within my cervical canal that had never been found with previous biopsies/treatment procedures.

A Cone Biopsy removes a much larger "pie" shaped piece of your cervix, which is also warranted if they suspect abnormal cells in your cervical canal. Both of my LEEPs were performed in my Gyn's office and my Cone Biopsy was performed in an outpatient surgery center where I was released to go home on the same day. I personally had an equally easy recovery with both of my LEEPs and the Cone Biopsy.

As far as how many times you can have a LEEP, etc - Like I said, I had 2 LEEPs and a Cone Biopsy. After the Cone Biopsy, my conventional treatment options were limited to a hysterectomy. You are no where near that point!!! And hopefully never will be. I don't know how old you are, but make lifestyle changes to boost your immune system NOW - diet, exercise, reduce stress, get plenty of sleep, mega doses of vitamins/supplements, etc.

By Jenny1987
Reply 3695159
January 11, 2013 at 2:57 am
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I'm so sorry you had to go through a hysterectomy, it sounds like that was the right decision to make though, thank god you were brave!

What are AIS lesions? They might be called something different in the uk? So from what I gather then, there's no set number of times I can have a leep, it all depends on how much they take away and I suppose then once they've removed the majority of your cervix they start looking at other options. I'm 25, so I'm looking into drastically changing my lifestyle, I've just damaged the cartilidge in my knee so can really do much exercise at the moment but diet and vitamins I can certainly work on now.mice been reading various vote taken to try and counteract CIN so once I've picked one I. Well go and speak to my doctor. X

Hi laurus

Thanks for replying and clarifying the difference between a leep and a cone biopsy. I've recently found out that tot all was removed and even though my endocervical margin was clear, I have CIN3 in my endocervical crypts so I think it's inside now. I'm going to ask about having an end when I next have a colposcopy which I'm hoping will be over the next couple of weeks. Hopefully I'll get a call from the gyn today so I can't book a colposcopy, I'll make the point then when I go in that having children is a massive thing for me. I have a copymofnthe histology which is the second comment from the top, I don't think there is anything else I can request! X

By Jenny1987
Reply 3699601
January 12, 2013 at 3:52 pm
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Hi everyone

So the oncologist called me and she said I can't have another colposcopy due to only having had a leep on 6th nov. When I questioned why my histology said not completely excised, she said they always put that on there to cover themselves! I mean seriously, and then she says don't worry!!!

She's told me I can go and see her to talk about my anxiety and any questions I have but I'm not sure how much that will help.

I think all I can do now is eat healthier, start taking various vitamins and I've also quit smoking. I'm not sure what else to do? : ( kinda feeling completely helpless and I've got a feeling something bad is coming and I just feel like no one is taking me seriously

By Katie1979
Reply 3705234
January 14, 2013 at 3:48 pm
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Hi Jenny! I know how you feel having CIN 2/3 myself. It's all clear now. I took the all natural approach changing diet, taking supplements and getting escharotic treatment done. I saw Dr. Nick LeRoy in Chicago. I've seen doctors in the past that hadn't helped my condition until I saw Dr. LeRoy. Don't feel helpless there are options and treatment available. Here's his info.. www.drnick.net keep faith and hope!

By Katie1979
Reply 3705238
January 14, 2013 at 3:50 pm
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