CIN3 THAT LEADS TO HYSTERECTOMY

HI ALL

I am a 39 year old women who only recently was diagnosed with CIN3 pre cancerous cells I went and had a colopolsy done during the procedure the doctor took a bieopcy it took 5 weeks for my results to come back (which i have to say is a stressful time as you imagine everything) I was called back to discuss my case and the doctor said due to very small cervic and not sure if spread into or beyond my womb we are taking you for a hysterectomy I am a large women so my case has been passed on to another doctor who specialzes in big women who need hysterectomy. I have never smoked so alittle part of me is angry but then thats not what caused my condiction I am lucky I have two beautiful girls and a great partner and very loving and understanding family for support I JUST WANTED TO KNOW IF ANYONE ELSE IS GOING THROUGH THE SAME CONDICTION and had any advice as what to expect.

THANKS FOR LISTENING

CATTYFRAN July 2012

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I am having a hysterectomy late this Summer after (3) procedures to treat CIN3/CIS sinc 2008 and still having positive margins for dysplasia. I have virtually no cervix left and it becomes harder to monitor the precancerous cells (with minimal cervicx) and virtually impossible to treat with minimally invasive measures. I don't have a lot of choices, but if you have never been treated for this condition before, I would not accept a hysterectomy as 1st line treatment. You should be able to get a LEEP or a Cone Biopsy. I was sucessfully treated for CIS in 2008. It took (2) LEEPs to get clear margins, but I was clear up until April of this year. I had an aggressive Cone Biopsy in June and did NOT get clear margins. I transferred my care to a GynOnc accordingly.

I would recommend a 2nd or 3rd opinion and consider seeing a GynOnc vs your normal Gyn, if possible.

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I would get another opinion if I were you...I also was told 14 months ago I had CIN 3 , I had a Leep procedure and so far I have had 3 check-ups and all have come back good , my next check-up is on the 31st of this month(July). I wouldn't let a Dr. go straight to a hysterectomy w/o going to another Dr., there are other things you can do !! I take alot of vitamins, go for walks, watch what I eat (alot of veggies, lean meat, no so much sugar). Good luck and get another opinion !!!

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I agree...I went last week to talk to my Onc/Gyn and I am scheduled to do a Cone Biopsy in a couple of weeks to take out a small spot that tested positive for cancer. She gave me the option to choose a hysterectomy or cone biopsy but advised me that it was no where near that point for a hysterectomy yet but I could go ahead with it if I wanted to. You don't even have cancer so a hysterectomy seems a little radical to do first. A LEEP is what I had done first so I would definitely get another opinion with an Onc/Gyn!
Good Luck!

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My story is that I found out I was pregnant in February and miscarried at the end of March. I have 3 other children ranging from 13 to 5. I had a D&C in April then a LEEP in June. At the same time as the LEEP, I also had my tubes tied, cut, and burned. The biopsy just came back Monday and it is Carcinoma in situ and the recommendation is to have a vaginal hysterectomy. I am personally going through the procedure in August. Cancer runs rampant in my family and I want to keep this at bay and be cured. I am done having children, so in my case I personally want everything to be taken out, but they are only taking the uterus. I will not have the hormonal changes of menopause until later. By the way I am 34 years old.

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Thanks you for all your messages they have really helped i forget to mention i am having an MRI scan tomorrow so hopefully i will know more by next week i will let u know cattyfran

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I would also get a 2nd opinion and yes with an oncologist obgyn. I had my first abnormal pap ever in April and did a colposcopy and then a leep for CIN/CIS. I did have clear margins however I am 37 and have three children so my obgyn and my obgyn onc did suggest a hysterectomy. It was an option as they also said we could just watch carefully as well. I do not feel as if I was forced into any decision. After much prayer we decided on a vaginal hysterectomy to take my uterus and cervix and I am now 12 days postoperative and feeling fine. We are waiting on the pathology from the surgery.... I think the decisions we make should be done so carefully with lots of information from our drs and from sites like this.
God bless, you will be in my prayers as all these women are.

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Some misconceptions: CIN 3 does not 'lead' to a hysterectomy! A hysterectomy is major surgery that requires a decision on the part of the woman having it done. Doctors can recommend a hysterectomy but the decision rests with the individual woman. Sometimes a hysterectomy is lifesaving, most often it is an elective surgery. The side effects are permanent, life-changing and the surgery is irreversible.

According to the American Society for Cervical Cytology and Pathology (ASCCP), hysterectomy is NOT recommended as primary treatment for CIN 3 - there are other less invasive options that effectively eradicate abnormal tissue. CIN 3 is NOT considered cancer by gyn-oncologists because there is no frank invasion, it is considered a pre-cancer.

Since hysterectomy is irreversible surgery, learning about all of your options before making your decision, including side effects, etc, should be at the top of your list so that you are actually making an informed decision. Not all doctors are up front about the changes that occur, especially sexual changes and many are uncomfortable discussing this with their patients, yet, they will recommend and do this kind of surgery - unconscionable!

Always get a 2nd, 3rd or however many opinions are necessary so that you really understand your options and what you are facing. Side effects do not always show up immediately. There are special needs that a woman has post hysterectomy that should be addressed including lifting restrictions. Do your homework, educate yourself, be informed PRIOR to making such a decision. A resource for learning about hysterectomy, what it is, what it does to a woman's body, the anatomy & function of female organs is the HERS Foundation. Counseling is also available for a nominal fee.

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Hello to all,
as many of you i have been diagnosed with HSIL CIN III and have been treated two times with LEEP. Both LEEPS and Following Pap smears came back positive for High grade dysplasia and positive margins so now the next step i had been advised from the Obgyn/Onco is to have Cone biopsy or a hysterectomy. I m 48years old with no kids and in pre menopause. The gyn said that if i decide to have a hysterectomy i can go with the vaginal either with laparoscopic approach. She said with the laparoscopy has a better view of the area and also she can take out the tubes or she can go through vaginal thats its more easy for me and also for her but without take out the tubes.
Did any body have been through all this problems and thoughts? I m soooooooooo much confused
Thank you very much

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I had a laprascopic daVinci hysterectomy at the end of August. Although I have 4 small incision scars on my abdomen, I decided against a vaginal hysterectomy (with no scars) as visualization is not as good which can cause an increased risk of complications (eg, compromising the bladder or bowel). My surgery was at 1:45pm and I was discharged at 7:30pm on the same day. Out of work for only 2 weeks. Not a drop of blood. Minimal pain. I only took the pain medication on the day of surgery and the following day. If you are seriously considering a hysterectomy, I would research daVinci (there are many YouTube videos) and see if there is a surgeon in your area who performs them. I had my cervix, uterus and fallopian tubes removed.

I also had 2 prior LEEPs and a CKC in June with positive margins. I have been battling CIN3 for years and ultimately made the personal decision to have a hysterectomy. GLAD I did as they found AIS deep within my cervical canal that had not been detected during any prior pap smears/ECCs, biopsies or even my CKC. Who knows how long it had been there.

I have had NO sexual changes. As a matter of fact, if it wasn't for the scars on my abdomen, I would forget I even had the surgery. My recovery was easy and I could not be more pleased.

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Regardless of the METHOD of hysterectomy, the uterus and cervix are removed during hysterectomy - therefore, you will NOT have uterine contractions during orgasm because there is NO uterus and you will NOT experience cervical tapping since there is NO cervix - there's just no getting around this because these organs are removed. Both of these organs contribute to the quality of orgasm including intensity.

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Thank you so much for your reply.
I don't know what is tha AIS. Could you please explain it?
Thank you

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I can assure that my orgasms are every bit as prevalent, INTENSE and easy to achieve as before the hysterectomy.

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What women contemplating hysterectomy need to know though is that it's impossible to have uterine contractions and cervical tapping, since you no longer have a uterus or cervix. So to be clear, if a woman experiences those sensations, enjoys them, recognizes the impact they have on the quality of her orgasm, I can assure you, those sensations will be missed. There is nothing to debate here. A hysterectomy removes those organs. Period. The clitoris is left intact, so a woman can still experience clitoral orgasm, providing there is no nerve damage or other complications. However, if you understand the anatomy of the female and just how many other things contribute to an orgasm than you would also understand the changes that occur and are absolutely noticed by a whole lot of women after a hysterectomy.

Since the uterus/cervix are internal, there may not be a full appreciation of the role they play, until they're removed. Thankfully, there are women who care enough to make sure that other women are informed so that when a decision is made, it's an educated decision about a part of their bodies they may seriously miss and also, have a right to grieve over. So, books have been written, organizations started, etc, to help women by giving them more information than a standardized, 'You'll be fine' or do as I say because 'Doctor' knows best, or help them avoid signing on the dotted line giving permission for an irreversible surgery they know nothing about. The bottom line is that it's your body, therefore, you have to advocate for yourself which means learning about your condition, researching your options, seeking several opinions, so that you are truly informed and make the optimal decision for your health. A woman will never truly know how she will feel post hysterectomy, because she hasn't been down that road before. And, you only go down that road once since hysterectomy is irreversible - thus my point about being informed beforehand. If hysterectomy is truly the only option, then I think most women would do whatever it takes to survive. It still is a good idea to be informed so that a woman can be prepared for changes. Not all changes occur immediately post hysterectomy either. Some women are affected more than others, as well i.e. if a woman has had heavy, painful periods, she may feel that the benefit of no longer having bleeding/pain outweighs changes from hysterectomy compared to a woman who has not experienced menstrual problems and may not feel the same way about it.

I'm sorry to hear that you had AIS, mmc, after an aggressive cone. However, I'm glad to hear that you researched your options, decided on the right method of hysterectomy for you and feel good about your quality of orgasm, bottom line...for you, it was the right choice. You also bring up a good point - if a woman decides to have a hysterectomy, research the method and the doctor. You want a board certified, skilled doctor with experience doing the surgery. Also ask about cauldoplasty, a procedure that can be done at time of hysterectomy to prevent future prolapse.

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AIS is Adenocarcinoma in situ of the cervix is a premalignant glandular condition. Glandular neoplasia of the cervix (AIS) is less common than squamous neoplasia (CIN3/CIS) and considered to be more aggressive. Skip lesions and growth from "inside" the cervix is common, which is my case. The abnormal cells were growing deep inside my cervix and upwards, thus not being detected on a pap smear or any other diagnostic/treatment procedure. Many GynOnc's recommend a hysterectomy as treatment for AIS, especially if fertility is not an issue. Keep in mind that AIS is an advanced stage of abnormal cells of glandular involvement (beyond stage I, II, or III).

I did not have a hysterectomy based on a diagnosis of AIS. I based "MY" decision to have a hysterectomy on having recurrent CIN3/CIS since 2008 and having exhausted all other more traditional treatment procedures without clear margins, coupled with being 41 and not having plans to have children. LUCKILY, the AIS was removed at the same time and all of my pathology FINALLY came back with clear margins.

With all of that being said, having a hysterectomy IS a big decision that should not be taken lightly. All surgeries carry risks and potential complications and a hysterectomy is no different. I researched the different methods of hysterectomies and decided on a daVinci laprascopic approach. I then researched MD's/hospitals in my area who performed this procedure (daVinci = robot-assisted). I met with my GynOnc several times and made my decision. He presented my options, potential outcomes of each and allowed me to choose.

I made the right decision for me. I may have very well dodged a bullet in that the AIS could have very well advanced to invasive cervical cancer and not been found until I started experiencing symptoms related to cancer. By this time, it may very well have been later stage cancer. I am lucky. My recovery was easy. I have no lingering side effects or complications. But I certainly understand that is not the case with all women.

Get a 2nd or 3rd opinion with a GynOnc. Research YOUR options. There is no guarantee that carcinoma in situ will advance to invasive cancer. And in the end, I am still not out of the woods. If my HPV remains active I am still at risk for recurrence in other places such as the vaginal cuff/wall. Although vaginal dysplasia/cancer is not as common as cervical dysplasia/cancer, the risk is still there and I will remain in the care of my GynOnc for monitoring.

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Thank you very much. I can see that you have searched a lot before making your decision! And thank God everything went very well.
After that they found AIS as I understand they didn't took out lymnodes right?
I have to decide what kind of surgery I want to have and also if I want to keep or not the tubes.
I have already spoke with 1obgn and 1Obgn/onc and both said me that Davinci needs much more time and is more help for a surgeon who is less trained to hysterectomies. From the moment you have searched a lot and you know much better than me could you please tell me base on what you had chosen to have a DaVinci?
Thank you in advance

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No nodes removed as I did not have invasive cancer. Had my pathology came back revealing invasive cancer, I would have needed another surgery to remove the lymph nodes. I completely disagree about the statement that less experienced MD's doing hysterectomies use the daVinci. The hospital purchases the daVinci robot for MD's to use for various procedures if they choose. The daVinci provides HD magnified visualization that you can't get with a traditional laprascopic surgery. I was operated on by one of the top GynOnc's in my area. Better visualization = less chance to compromise (aka, knick) an adjacent organ. Recovery with a daVinci is, supposedly, much quicker. Less blood loss. I work in the medical device field and know quite a few surgeons who use daVinci, but you really need to do your own research and make the decision best for you. Hystersisters.com has lots of information about all procedures and forums and reviews by patients.

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I think the point is that ususally hysterectomies are not the first line of treatment for precancers, even for aggressive ones. After long battles and recurrent CIN or CIS they seem to be offered more commonly. AIS seems to be a different story, because of the skip lesions and other issues mentioned above. I have CIS, had a cone with no clear margins and glandular involvement. Waiting for 6 months to see if I am clear especially with unclear margins is driving me crazy. All my family says just get a hysterectomy, I tell them it hasn't been offered and is a little more complicated.

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Did your Dr ever explain what "glandular involvement" means in regards to CIS/CIN3?

The first GYN/ONC said "Younger women can have glandular cells on the outside of the cervix which is probably why they found that"

As a general comment for the original post, hysterectomies are offered for CIN3 based on a case by case basis I believe. Age and reoccurance are factors for it according to the GYN/ONC.

I wish you the best of luck with treatment.

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Yes, but the overall guidelines, which I just read because this is a hot topic on another site, say hyster should not be offered as a first line of treatment, but thank goodness Drs can still use their discretion. and this is a dr/patient decision. There are clinical guidelines out there which are the recommendations from their prof societies, though, and those have huge implications for our care. They should be viewed as the gold standard for care on average. For exame whenever I see watch and wait in a non pregnant cin 3 person I freak and post the guidelines! I think as patients we need to know the guidelines, because it should outline the basic standard of care, but also because it informs us what we are up against when we advocate for our own health, as individuals, not the general population. For example I am done with having kids and am in menopause. Given my biopsy results it might be a no brainier to offer a hyster to me. But my dr is a stickler, and will likely wait till recurrence. I have mixed feelings about it. I was told I was in was menopause and had a precancer on the same day. I don't want another surgery. I do poorly with general. I am afraid of it coming back on my vaginal wall or elsewhere. But with bad margins , glandular involvement, the words "invasive can't be ruled out" on my report, I worry that they missed something. The biggest failure at this stage is to miss residual disease. I believe this is the worst fear of many. This would be the only reason I would push for a hyster.

As for the glandular involvement. I was told that my squamous cell carcinoma was more extensive and while still cin 3/ CIS has traveled to the endocervix. This was in part suspected by my doc, because of the severity of the cin3. It was missed by the pap and ECC.

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Oh I just noticed this public. I wonder if cattyfan could switch to members? And complicated and the rest of you I hope you are doing well. To be clear my dr said wait 6 months and we will repap and hpv test. Waiting game is no fun. First visit he said this is a marathon not a sprint. Feel like I am only at 10 mile mark and already flagging.

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