CancerCompass message board discussion started by flmnt on 2/4/2008 http://www.cancercompass.com/message-board/message/all,20631,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi...Is it true that LEEP can affect fertility...and how common is it? I'm scheduled for one this week. My biopsies didn't show any dysplasia....but my doctor said that he could see it very clearly...so he wants to proceed with the LEEP. The pain makes me nervous...but more than anything, I'm concerned about the long term effects. flmnt Mon, 04 Feb 2008 00:00:00 GMT I haven't had my leep done yet, but my doctor told me there can be some complications.  She asked me about having kids (since I'm 37 and haven't had any yet) and said there is a greater chance of miscarriage in the second trimester after having the leep done.  She didn't make it sound like a dealbreaker...  =)  Hope this helps...  pugmix Mon, 04 Feb 2008 00:00:00 GMT Increased risk for miscarriage would only be there if the LEEP were huge, like a cone biopsy.  Most likely it would not be that big of a biopsy. More important is why the LEEP with normal biopsies. If it is a very small LEEP that is planned to biopsy the area a little more then it may make sense (just like taking a lot of little biopsies without a LEEP), but a full LEEP removing a significant amount of the cervix may not the best course.  That could expose you to all of the risks (albeit small) and not really give you any benefit. If uncomfortably with the recommendation, get a second opinion. With the findings you described,  you have time to get as much information as possible to make the best informed decision.   Please make sure you follow-up with a physician you trust. General recommendations via email or websites are no substitute for a good physician patient relationship and informed decision-making.  Regards,Dr Vasilev www.gyncancerdoctor.com      dr Steve Wed, 06 Feb 2008 00:00:00 GMT Get a second opinion. LEEP does have a lot of complications. I had nonstop discharge for two months that turned into an infection until I began taking a product called DIM. There is also a risk of fertility being affected. Make sure you really need a LEEP before going through with it. In addition, there are three other methods for amputation - cryosurgery, laser, and cold knife cone biopsy. After you get that second opinion, if you do need an amputation, thoroughly discuss the pros and cons of each method, as well as your condition, so that you can make an informed decision.Sorry, but LEEP is a dirty word for me. herenow Mon, 11 Feb 2008 00:00:00 GMT Second opinion or even third is always a reasonable option. However to clarify a few issues on the basis of what the published medical evidence is, here are a few comments. There are always exceptions to anything.  Even if something is 99% safe or 90% safe, it means 1% to 10% of people might have an issue or complication. So, certainly nothing is absolute. Having said that:Cryosurgery destroys tissue by deep freezing, then the dead frozen tissue literally falls off.  You do not know what was in the tissue that was destroyed which can be misleading.   A bit old school but used by some and is fastest to accomplish. Can definitely cause cervical stenosis (narrowing of the cervical opening). And talk about a discharge............never-ending in some cases......Laser destroys tissue by vaporizing it.  LASER sounds great, and high tech, but there is nearby thermal damage from extremely high heat.  Also, again, you have no idea what you destroyed, and therefore risk missing something worse.  The amount of tissue damage is certainly no less than a LEEP.  It is possible to do a "laser cone", but that is nothing but a LEEP using a laser beam to cut instead of an electrode.Cold knife cone is certainly the main old school alternative to LEEP, and is still used often when the LEEP does not get it all or for removing larger lesions.  A cone is usually MUCH larger than a LEEP, so the risk of fertility issues is quite a bit higher than a small LEEP.  Again, except for huge cones, neither cone nor LEEP impact fertility to a great degree.  However, it all depends on the individual situation. Amputation, literally, is a HUGE hybrid of a cone and trachelectomy (removal of the whole cervix).  Extreme and very rarely used except as a "radical trachelectomy" in the removal of invasive cervical cancer for fertility preservation purposes.  Given the alternatives, the LEEP is the smallest, least invasive and least "toxic" alternative if a biopsy is needed that is larger than can be obtained by small office biopsy instruments. Dr V http://www.gyncancerdoctor.com  dr Steve Mon, 11 Feb 2008 00:00:00 GMT Dr. V, it's not that I want to be disrespectful to you. But after speaking to a lot of women and comparing all four methods of partial amputation, more of them had infections from LEEP than anyone seems to realize. In addition, if that live specimen a doctor got via LEEP guaranteed the dysplasia would never return, I'd say you had something there. In reality, the success of LEEP is exactly the same as the other three methods for partial amputation.Thirdly, I keep reading posts by women who have had repeat LEEP's. I haven't seen any women who had laser post about getting laser done repeatedly. In fact, one woman I spoke to had laser after the LEEP failed her. If there are any women on this board who have had to get repeated laser, please have them speak up.Fourthly, LEEP is invasive. Just do a google search for "appearance of cervix after LEEP", and you'll see what I mean. I've seen pictures of how a cervix looks after the other methods, and granted, cold knife cone biopsy is the worst. But the cervix didn't look so amputated after it healed from laser or cryosurgery, although each method does have its risks.Last but definitely not least, insurance companies love LEEP because it is cost effective and guarantees more profit. The majority of doctors I have met are caring people. But their hands are tied by the medical board of directors, who have their hands tied by the insurance board of directors, who are only interested in profit.I personally refuse to ever go through LEEP, again.  If the dysplasia comes back, I already told my doctor I insist on laser.What it all boils down to is this: carefully go over the pros and cons of each method, women, and do what is best for the kind of dysplasia you have and your own personal comfort level. I can't repeat that enough.  herenow Fri, 15 Feb 2008 00:00:00 GMT I don't want to argue, but do feel compelled to add to this thread for the benefit of anyone reading this and making decisions about their care. Regarding infections, there is nothing inherent about the LEEP electrode tools vs. any other way of damaging tissue that is less or more  invasive. The all burn or freeze and leave an "open wound" of sorts on the cervix. Damaged tissue in the presence of bacteria always invites the possibility of infection. It happens after any of these procedures at an equal rate.  What makes a difference is how much tissue is damaged,regardless of the tool.  Chat boards are not a good way to measure the % of anything because more patients having problems tend to post and by sheer numbers LEEP is very very common these days. Regarding how much tissue is damaged depends upon how large of an area needs to be removed or lasered or frozen. It is not the procedure, it is the specific situation of the patient (how much dysplasia there is) and what the physician does. There are many sizes of LEEP electrodes.  Some are literally tiny. With a laser you can literally vaporize the entire human body, taken to an extreme.  It is not the tool, it is what is done with it. If anything, patients should ensure how much of their cervix needs to be removed or vaporized or frozen to optimize the chances that the dysplasia has been removed. ***This concept  is VERY important !!!*** The biggest advantage of a LEEP is that, just like a cone, tissue is removed for the pathologist to examine  and see if all the dysplasia has been removed or not.  In cases of advanced dysplasia (CIN3 or CIS), an equally important reason to remove cervical  tissue (as opposed to destroy it) is to make sure there is no invasive cancer present.  If one freezes or lasers a cervical dysplasia area then they can only guess, literally, whether or not they "got it all" and are completely assuming that there is no invasive cancer.  If an invasive cancer is unwittingly frozen or lasered, it is inadequate therapy. When the undiscovered cancer grows back, and it most certainly will, it is not just a local cervical problem, it is a threat to life.  As far as costs, the most cost effective is cryo not LEEP.  Laser is the most expensive because one has to buy or rent a laser....very costly. I don't want to get into a debate about conspiracy, but how much a doctor makes vs. what the patient co-pays and what a third party insurance carrier covers are totally different concepts.  For example, a hypothetically corrupt doctor who wanted to make a lot of money would go with cryotherapy because they are cheap to do (little overhead) and quick.  The insurance company is happy to pay a little less for it per patient, but the doctor then can make it up on volume.  Lots of patients could have it done in a day vs. a LEEP which takes some time to setup and do properly. Result is more profit per day for the doc. This is most definitely not the reason LEEPs are done preferentially in many cases.  The main reason is that the pathologist can tell the physician and patient whether or not the dysplastic area has been removed or not. As far as guarantees, there are none with any of these treatments.  First of all, dysplasia can recur because not all of it was removed. Although LEEP and cone are the best for optimizing removal of the dysplasia, they are not perfect either.   Secondly, infection with HPV can persist long enough for a new dysplasia to arise or reinfection with HPV can occur, eventually leading to a new dysplasia in some.  Although all the points raised are legitimate questions and concerns, a decision can only be made properly when a trusting physician-patient relationship is in place and each individual patient's situation is fully explored.  In some cases, cryo and laser are certainly reasonable.  Going one step further, beyond the topic of this conversation, is that many early dysplasias are over-treated (using any of these tools).  CIN 1 and many CIN 2 dysplasias can go away all by themselves with observation only. So, again, each individual case is different.   dr Steve Fri, 15 Feb 2008 00:00:00 GMT Dr. V, in every medical journal and women's health information I have read since my LEEP, they generally say the same thing. LEEP has the highest risk of infection. They also say it's cost effective, can be done quickly doctor's office (about 30 minutes), and was easy to teach to doctors so that they could perform LEEP right there in the office. (I did find an order sheet for LEEP instruments and was quite surprised at how cheap they really were.) They also say the success rate of LEEP is exactly the same as the other methods.Now, granted, it was universally agreed that cryosurgery is not the best method for more severe cases of dysplasia. But why is that live specimen from LEEP not preventing it from coming back? Why is the success rate of removing abnormal tissue via LEEP the same as the other methods? How do you explain the overuse of LEEP? How do you explain the repeated LEEP's? Where are the women who have had repeats of laser? Most importantly, if a colposcopy is not good enough at showing the kind of dyplasia or cancer a woman has and exactly where it is located, can you see what is wrong with the current methods for detection?I want women to take their health very, very seriously. But I am alarmed when doctors automatically tell women they need to get a LEEP for dysplasia rather than discuss the pros and cons of each method and the kind of dysplasia they have so that each woman can make a very informed choice. I had CIN I with one focal point at the transformation zone that was CIN II. My original doctor never discussed the other methods for partial amputation. She told me I needed LEEP. Knowing what I now know, I would not have chosen LEEP. (I fired her.) If it is the best method for a woman's condition, then she should by all means choose LEEP. But I can't stress enough that doctors should not tell them to get LEEP without that discussion, first, which is the entire point of my posts.I found a few very informative websites that explained the procedures in a thoughtful way.http://www.gynalternatives.com/treatment.htm http://www.mjbovo.com/Women/DysplasiaRx.htm These two sites specificially explain LEEP.http://www.asccp.org/pdfs/patient_edu/leep.pdf http://en.wikipedia.org/wiki/Loop_electrical_excision_proced Dr. V, I would like to continue this discussion with you privately. herenow Sat, 16 Feb 2008 00:00:00 GMT Pretty good links to explain the various procedures to readers.  Thanks for posting them. I think this discussion is good for the general readership.  The only caveat I would have for readers is that one should check the dates of pages posted on the internet and preferably also who is posting them.  One of the links, which notes that laser is becoming standard of practice, is very old (1996-1999).  Over the last 8 to 10 years the LEEP, not the laser, has become more of a standard. As far as colposcopy is concerned, it is also just a tool. A microscope. The skill level between physicians varies a LOT. The gold standard is the biopsy, not the visual interpretation by the physician. The colposcope merely helps your physician find the worst looking areas for biopsy.   What has been posted so far is essentially saying the same things, especially if you explore the attached links in this thread. 1/ Treatment has to be individualized. Ask your doctor about the extent of your dysplasia and the grade. You may or may not need treatment at all.  See other threads, but CIN1 has a very high spontaneous regression rate (30-60%), and CIN2  is also sometimes observed safely, going away by itself in 10-40%. CIN3/CIS is a little more risky to observe untreated and it usually progresses. Reports differ, but the idea is the same...some patients are over-treated. This does not mean "forget about it". It means "observe it" under the care of a physician who sees a lot of dysplasia and see what happens. The danger of progression is sometimes overemphasized and scares patients into treatment. Remember, it takes many years for CIN1 to possibly progress to cancer. You have time to explore options in most cases. Even CIN3 can be upto 5 years away from invasion, but again, this is more dicey and you truly need an expert opinion in these cases.  2/ Although I don't see how expense that is not borne by the patient really ties into receiving good care from the patient's perspective, the cyro is the cheapest and quickest, followed by LEEP and the laser is the most expensive. In that regard there is a good balance between cost and effectiveness.  Cost-effective does not mean "cheaper" which does not take effectiveness or quality into account. It is actually a fairly complex  assessment method (often misused) to compare the cost of procedures that are deemed reasonably effective.  Also, it depends on who the cost is assigned to: the patient or the doctor or the insurance.   So the "overuse" of LEEP partly rests with the fact that for a doctor, in their office, given the choice of a less effective Cryo or a very high overhead cost  laser, LEEP is a golden middle of sorts. And, it is way less expensive to the patient than a cone, which requires a hospital operating room or surgi-center. Hopefully that explains the basic cost-effectiveness aspect to the readers.    3/ Whether you burn, freeze or remove tissue, dysplasia can come back, especially if it is high grade. None of these methods are a "for sure", and it may be a recurrence or a new dysplasia from a new HPV infection. The advantage of cone and LEEP is that you have a pathologist's report which says whether or not the  "margins" are clear or not and whether or not cancer is present.  If clear, and no cancer, less likely to return.  With laser and cryo the physician is only guessing and even more tissue can be destroyed than necessary in an attempt to "get it all". Most importantly, for those with high grade dysplasia (CIN3 or CIS), you never know if there is a cancer that was "mistakenly" frozen or lasered.  Trust me, I have cared for and lost patients who presented with invasive cancer after incomplete therapy by laser or cryo.....and it was too late, despite radical surgery and radiation.  4/These tools all cause freezing or cautery damage as part of the treatment. The risk of infection is partly related to how much damage is caused, regardless of the tool. How much damage is related to how large of an area is treated. 4/If a patient is not comfortable with their physician, or suspect that they do not perform many of any of these procedures, consider a second opinion. Doctors have variable skills and knowledge about dysplasia. Be wary of both under-treatment and over-treatment plans without a good explanation.  Again, these are all good points and a great discussion. I am happy to clarify points but not really interested in taking the same points further. I believe this thread, along with the posted illustrative links, will help women make an informed decision.Regards, Dr V   dr Steve Sat, 16 Feb 2008 00:00:00 GMT Dr. V, I'm glad we at least partially agree on something. However, I want to emphasize when I read medical journals, they all loved LEEP because it was so cheap. Ultimately, it is the insurance company that decides which tool a doctor should use. Remember, insurance companies are profit driven. Tragically, the money doesn't go to the doctor and then to the insurance companies, which is the way it should. The money first goes to the insurance companies and then trickles down to the doctors. (Yes, I did my homework, which included talking to doctors themselves.)I do have a few questions for you.1. Since colposcopy is merely one diagnostic tool, why not use PET scans or CAT scans or MRI to get a fuller picture? I realize they are not cost effective, but they are other forms of diagnostic tools. I want a more accurate picture before I choose any knife. Perhaps women should start fighting to demand the availability of these additional tools.2. Since each of the four "knives" are ultimately faulty, what are you doing as a physician to demand researchers to concentrate on creating a medication that would cure or suppress HPV? That would save women's lives even more. I did, afterall, check the stats about the chances of dysplasia returning within the next five years after a woman's initial diagnosis, and the stats were not comforting, even with clear margins.3. I appreciate the way you pointed out how doctors use scare tactics. That is exactly what the doctor I fired did to me. As a result, I regard myself as a victim of LEEP, which is why I keep repeating myself and telling women to carefully go over the pros and cons of all four methods of partial amputation and the kind of dysplasia they have in order to make informed choices. 4. Do you know women who had repeats of laser? If so, please have them speak to me because I haven't met any, yet. I have, however, met a lot of women who have endured repeat LEEP's. I have also met women who had cryosurgery and then had to use another method after it failed. herenow Mon, 18 Feb 2008 00:00:00 GMT As a footnote, while it is true each method of partial amputation runs the risk of infection, LEEP does have the highest risk. herenow Mon, 18 Feb 2008 00:00:00 GMT Again, I'm not sure that how the money flows should influence women in seeking care, but for the record: in capitated prepaid managed care what you say is slightly true. In any other health service plan the money flows to the doc, part from the insurance company paying out a claim and part from the patient as a copay. It is really a very complicated topic in itself and is not for this forum thread. For anyone interested in learning how "managed healthcare" works, I would refer them to Peter Kongsvedt's book on Essentials of Managed Healthcare 5th Ed 2007.  As to the questions:1/The tests mentioned are terrible for dysplasia because none of them can see microscopic changes.  2/We have the HPV vaccine.  If used and deployed properly (before sexual contact), we should see a dropoff in cervical cancer and dysplasia over the next 25 to 30 years. Remember it takes upwards of 10-15 years from HPV infection to cancer. Vaccine-like treatments for women already infected or between infections at a later stage in life are in the research pipeline. All of these destructive treatments will likely go away over the next 25 years. 3/Agree. Communication and true informed consent should be the goal.4/This is probably as good a forum as possible to find the women who have had laser.  There are just not too many of them, relatively speaking. I am an oncologist who treats cancer primarily, after the dysplasia progresses. Since I truly believe that the laser is a very outdated concept for most dysplasia treatment, for all the reasons mentioned, I have not personally performed one for over 15 years. In early dysplasia, IF treatment is indicated at all, I concur that someone who does them a lot can certainly use laser as one option.  RegardsDr V  dr Steve Mon, 18 Feb 2008 00:00:00 GMT Pointing out the how the money flows to insurance companies is not to tell women which tool to choose. It's to help them understand why insurance companies prefer certain tools over others. Interesting book you mentioned, by the way, but I was a a little suspicious of it, after I read it.I'm glad the vaccine currently available can treat children who are still virgins. But that doesn't help those of us who are infected with HPV. Our lives, after all, are more vulnerable. However, are you familiar with Roche's TG-4001? So far, it seems to be having success with clearing up dysplasia. herenow Mon, 18 Feb 2008 00:00:00 GMT I'm sorry you regard laser as outdated. I don't. It is still another tool. I already told my new doctor if the dysplasia returns, I'd first like to be Roche's guinea pig. If that new "magic" medication doesn' work, I insist on laser. I want to keep it available, inasmuch as I want all the tools available, which includes LEEP. herenow Mon, 18 Feb 2008 00:00:00 GMT TG-4001 is still in Phase II studies I believe and it only targetsHPV16, which is responsible for up to half of all dysplasias, but not all.  The challenge is to determine which HPV genotype is causing problems for any given patient and then targeting it (or them). Can't forget HPV18, 31 and 33 among a number of less transforming genotypes. It's the future, very possibly near future, but not wound too tight yet for prime time.  Lot's of excellent work being done by Roche and others.I think we should stop this thread because it is going off topic and would be harder for anyone to find if anyone is seeking info about this vaccine related material.  Might warrant other posts and new threads though if not already addressed somewhere on this board......   Dr V dr Steve Mon, 18 Feb 2008 00:00:00 GMT I had CINII that was found endocerival.  I went to a oncologist gyno for a second opinion - the first was to have a LEEP.  She (the new doctor) said she see's 'white' up there, a cm or so that she can see.  So she recommends a laser. Any comments or suggestions that differ from the ones above with endocervical?  It seems more of my cervical tissue can be saved doing the laser since everything I have is in that area.  Please comment.  And I'd like to know affects of this particular treatment (she says she wants to go about 2 cm up and that my cervix measured at about 3 cm) on fertility.  I have no children but want them soon.  Oh and healing times and times recommended before trying to conceive. Thanks,Keri-Dawn  kdselly Thu, 24 Apr 2008 00:00:00 GMT In capable hands,either tool is fine. The laser can "cone in" and eliminate or destroy tissue in a little bit more narrow way so that the fibrous part of the cervix is preserved a bit better.  Retaining the bulk of the fibrous and muscular part of the cervix (essentially the "meat or substance" of the cervix) is important for retaining babies.However, there is a risk that you have something worse tha CINIII in the canal and you will never know unless that is removed, for the pathologist to review, rather than burned.  The only way to remove it is either by LEEP or cone biopsy.  In skilled hands , that can still be done in a way to preserve the cervical fibro-muscular part and there should be no problem with retaining pregnancies. As far as recovery, it should be the same but depends upon how much is removed.  Assuming the same amount of cervix is removed or destroyed, the recovery is pretty equal.  Hope this helps Dr V .  dr Steve Thu, 24 Apr 2008 00:00:00 GMT "As a footnote, while it is true each method of partial amputation runs the risk of infection, LEEP does have the highest risk." This has got to be the most outrageous claim I have EVER read.  A LEEP is NOT a 'partial amputation' and no offense, but you have no right saying such a thing.   A LEEP removes cells and tissue that could turn into cancer.  An amputation implies that this is a permanent removal of an area, but you are wrong - the tissue and cells grow back.  Abnormal cells and tissue are removed so NEW/HEALTHY tissue takes its place! PLEASE get your facts straight before you go saying such things and frightening others.  And if you are going to make such claims then back it up by factual references. iluvmydog Wed, 28 May 2008 00:00:00 GMT Dr. V:Why would a hysterectomy be recommended for CIS when a Pap post LEEP (margins not clear but ECC negative) was never even done? Faith2 Sun, 02 Nov 2008 00:00:00 GMT Why would a hysterectomy be recommended for CIS when a Pap post LEEP (margins not clear but ECC negative) was never even done?If this is the case with you, please get a different doctor, immediately. A lack of follow-up such as this is negligence. In addition, please look at all of your lab reports. That way you'll know exactly what has been happening, all along. In addition, make sure the new doctor fully educates you about your condition and the risks and benefits of all your treatment options. That way you'll be making a very informed decision, and that alone takes away the mystery and reduces the fear factor. It will also give you more confidence in your doctor's ability to use wise and careful judgment, which will help reduce stress.Call your general practictioner as soon as the office opens on Monday, and get a referral. As somebody whose case was badly mishandled in a different way, I can't recommend enough how empowering it is to be proactive about your health. herenow Sun, 02 Nov 2008 00:00:00 GMT Hi all.  The last post has some good comments but is not exactlycorrect.  A gynecologist who has done a LEEP and knows that the marginsare positive AND knows that there is not much cervix left to do abigger LEEP may recommend a hysterectomy.  That would be a reasonableoption.  I would not trust a negative Pap with a LEEP and positivemargins. However, here are a few things to ask:1/ Doesthe pathology report contain something worse like evidence of earlyinvasion?  IF so, and it is minimal, and you are interested in futurefertility, a cone is still reasonable.  IF so and there is a lot ofinvasion, then you may need a radical hyst, not a simple one. 2/If the path report only contains CIS, why does the physician feel thatthey can't do another LEEP or a cone?  Between the two, in general, Iwould recommend a cold knife cone because the pathlogist does not haveany burn artifact from LEEP cautery to worry about when assessing themargins.  On the other hand, if your doc feels they can get around theremainder of CIS with a LEEP, it is reasonsble.  You may beable to get another LEEP or a cone.  A hyst is an option, but is alittle old school if a repeat LEEP/cone is possible.  The best personto discuss this with is your physician who has the luxury of reviewingthe path report and has examined you.Hope this helps. RegardsDr V dr Steve Sun, 09 Nov 2008 00:00:00 GMT I would not trust a negative Pap with a LEEP and positive margins.Dr. V, I like your advice to her, but she didn't say there had been any kind of follow-up PAP smear. In addition, that she came here for advice makes me wonder how explanatory her doctor is being with her. That's why I think she should consider getting a different doctor. Or at the very least, get a second opinion to find out what options she does have.A good, ethical doctor wants her to be as edcuated as possible in order to make an informed decision. He or she would have gone over all of this with her and welcomed any questions she had so that she would feel comfortable with a recommendation.Because I was not fully educated, the wrong treatment option was pushed and me . It was then botched in the process by a doctor who tried to cover up. I now have to report him to the medical board.I just don't want other women to be in my situation.  herenow Sun, 09 Nov 2008 00:00:00 GMT