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Hello all,
Ok, after being diagnosed with CIN III is it standard procedure to have a cone biopsy done? Let me re-phrase that....Should a cone biopsy be done if you have been diagnosed with CIN III to determine whether or not invasive cancer is present? Should a cone biopsy be done before any surgery (hysterectomy) is done? Is a cone biopsy just a standard procedure when CIN III is diagnosed?
Thanks for your replies.
Tavy
Cancer Surgery Hysterectomy Acid reflux Burns Radiation therapy Cervical cancer Menopause Pain HPV Endometrial cancer Folic acid Stress
Hello Tavy! Since I'm at home recuperating, I get to be the first to respond to you. Of course every case is different but ...
When your biopsy shows CIN II or III, the next step is to attempt to remove the abnormal cells. A doctor can do this with a leep (where they pass an electrically-charged wire through the top layer of your cervix like an ice cream scoop) or a cold knife conization (where they use a regular scalpel to take a cork-shaped sample from the center of your cervix. The doctor can also do an ECC (endocervical curettage) during the procedure which is just a small sampling of cells farther down in your cervical canal.
The objective is for the doctor to remove all the abnormal cells plus some extra tissue around the abnormal cells to make sure all the bad cells are gone (clear margins).
Many women have one leep or cone performed and are free from dysplasia, but sometimes it can return and a second procedure is needed. The most important thing is that you continue to be checked regularly so any recurrence can be treated! And you need to do everything you can to boost your immune system by getting more folic acid, leafy green veggies, dark yellow veggies, and sleep! Oh and NO STRESS! =)
Dysplasia does not automatically mean a hysterectomy so please do not be scared. There are many things that can be done. Just make sure you have good communication with your doctor and educate yourself so you can ask questions.
This site was a god-send to me because I learned so much. I encourage you to read some of the other posts. There are many here that, like you, have CIN II or III diagnoses and are having leeps and cones.
Best wishes to you! Please keep us posted on how you are doing. You don't have to go through this alone!
Thank you for your response :) The reason I have posted this question is because I am very confused. In September of 2007 my pap came back bad. My doc sent me to a gyn for a colposcopy. During the colposcopy the gyn told me that the lesion was very large. He could see it with the naked eye. He told me not worry that it wasn't cancer , but I would need a hysterectomy because there was too large of an area for leeping. He said all this during the colposcopy.
The results of the colposcopy came back as CIN III. We scheduled surgery for Jan 2. I had a total hysterectomy. One week after my hysterectomy I went to my family doctor because I felt like I wasn't getting enough air. I called gyn about it. He blew it off, this is why I went to the family doc. My family doc determined it was the pain meds I was taking causing this problem.
While he was looking at my electronic file on his laptop computer, he said "I didn't realize that they had found invasive cancer." I was shocked. He told me the pathology reports were in from my surgery and I have Stage 1b cervical cancer. I had just talked to the gyn earlier that morning and he didn't say a word.
Anyway, I recently had to go through 39 external radiation treatments because I should have had a radical hysterectomy, not the total. My oncologist told me the gyn that did my surgery should never have done it without first doing a cone biopsy. I didn't even have an ultrasound...nothing before surgery.
Anyway..I was just wondering if any of you knew if the cone biopsy was standard before a hysterectomy is decided.
Tavy
Hi Tavy,
I think it depends on how extensive your Dysplasia is in order for your doctor to make a determination of LEEP vs. Cone. I had CIN3, but a very small lesion and a LEEP was done. Other girls on here have had Cone performed for the same diagnosis.
I am so sorry to know that your doctor did not inform you that you had invasive cervical cancer. It is such a shame that it seems for every teriffic doctor out there, there are 5 bad ones.
Good luck with everything, and stay strong! You've come to the right place for support!
Wow! Bless your heart!
The part that bothers me the most is that it does not sound like you were informed or allowed to participate in your treatment options. It breaks my heart that you are having to second guess everything now.
There are many websites that discuss staging and treatment protocol. Here is what one of them says:
"Stage 1 - This stage is often divided into Stage 1A and Stage 1B. In both these stages the cancer has started to grow into the deeper tissues of the cervix. In stage 1B the cancerous areas are larger, but the cancer is still only in the tissues of the cervix and has not usually spread. It can usually be seen without a microscope, but not always. Stage 1 cervical cancer is generally treated with surgery or radiotherapy." Under the surgery option, they list hysterectomy with radiation or trachelectomy.
So it sounds like you very well may have had the appropriate treatment if your diagnosis was stage 1B. I would encourage you to get a copy of your records. You are entitled to them and that way you can see for yourself what your results were. It may help you feel more confident in your treatment.
There are other women on this site who can provide you with better information than me because they have been treated for invasive cancer and successfully completed their radiation/chemo therapy. I'm sure you will have more posts tonight!
I wish you the best in your recovery, and I hope you find the answers you need!
in answer to your question about whether a cone biopsy preceeds a hysterectomy....often a doctor will do that if cancer is suspected because the cone biopsy will determine how he/she will proceed (whether the hysterectomy is radical or total, for instance), but it's dependent upon the surgeon's preference.
did you have a second opinion prior to having the hysterectomy? for future reference....and hopefully you won't need additional surgeries (!)....it's always a good idea to have a second opinion prior to major surgery. and, i'm guessing that the doctor who did the surgery wasn't a gynecologic oncologist. yes...hindsight is 20/20.
it sounds like you've got a doctor that not only didn't inform you about the results of the pathology report after the hysterectomy, but simply didn't provide you with you much information prior to the surgery either. i'm really sorry that you had to have that kind of experience with your doctor.
i hope you're doing well now and feeling better. you've been through a lot...too much (!). it's time for you to heal. sending gentle hugs...
and, i should add that many doctors would treat cin3 with a cone biopsy only, rather than with a hysterectomy. of course, it depends upon individual circumstances.
it doesn't surprise me that the doctor didn't do ct scans and such....if he thought he was only going to see dysplasia and not cancer, then scans aren't generally needed.
Hi Tavy,
I had HGSIL, Cin3 and had the Cone Biopsy. My margins were clear and have been checked every 3mths for the past year and have now moved to 6mth with no reoccurance for 14months, I believe it is standard to do the cone first before proceeding ontu a hysterectomy. That is what I was told. Stay Strong, Angela
I agree with all of these ladies here. When my pap showed CINIII in December 2007, i went for my colposcopy and again it came back as CINIII and my previous OBGYN said to me that if i was one of his family member, he would have recomended hysterectomy ! I was so scared and was crying and i decided to go for a second opinion. I went to see my Aunt's OBGYN who is a wonderful doctor and he looked at my file and path results and asked me if i have done a cone biopsy yet? Of course that was never even mentioned to my by my previous OBG so i decided to go ahead and do a cone procedure.
The pathology result from my cone showed CIN2 and CIS ( carcinoma in-situ). I am now under a care of a GYN/Oncologist and have to go next tuesday for another colposcopy due to my unclear cone margins.
I am very sorry that you had to go through that experience with your doctor and i hope everything goes well with you. I will keep you in my thoughts and prayer. Bless you.
I had CIN II/III and had laser ablation instead of the cone or LEEP. My doctor said it caused less scarring and less fertility issues.
Unfortunately, I still had an abnormal pap a few months afterwards. When I went in for my colposcopy, the doctor said the abnormality looked like scar tissue and didn't take a biopsy to be 100% certain -- so I am going to get a second opinion.....
Sorry to hear about your experience. Stay strong!
WOW...I didn't expect such a large response. I guess I'm just confused. I have one doctor telling me that at my age (42) when CIN III is present that a hysterectomy is a very normal way to deal with it. That's fine. The oncologist, on the other hand, tells me that when CIN III is present, especially with a woman my age, before a hysterectomy is performed a cone biopsy is a must. The cone biopsy will determine if invasive cancer is present. If invasive cancer is present, depending on the stage, a total hysterectomy isn't the surgery of choice. A radical hysterectomy is needed, and possible radiation and chemo. He told me this is standard procedure and the gynecologist that did my surgery did not follow procedure for a woman of my age.
All I know is that I was first told that I had a pap come back bad and needed a colposcopy . During the colposcopy the gynecologist tells me that I have this huge lesion that isn't cancer and I need a hysterectomy. GOSH I WAS DUMB! The colposcopy reports come back and say it's CIN III. I have a total hysterectomy and the pathology reports say it's stage 1b cancer with positive margins. And I'm not even sure what that means (positive margins).
Just before I was diagnosed I lost my mom in a car accident. I think I lost my head over losing and didn't know how to deal with my own health issues. I just trusted doctors and didn't ask too many questions. I just did what ever I was told to do.
So now here I am, six weeks out of radiation, with swollen legs and ankles, can't eat any fresh fruit or veggies or I go to the bathroom on myself, still dealing with radiation burns, horrible acid reflux and now going through full blown menopause (the radiation killed my ovaries).
I'm not looking for sympathy. I know I screwed up and didn't ask the questions that needed to be asked. I was scared and I was still freshly dealing with the death of my mother. I love the team of doctors and nurses I now have. The are very helpful and caring. I guess I'm just trying to figure out why this gynecologist didn't do the cone biopsy, and if he had, would it have made a difference? No doubt, I should have had a radical hysterectomy and a cone biopsy would have showed that, but will not having one increase my chance of recurrence? I know that's a question for my oncologist, but I always forget to ask him specifics. I get so nervous. Maybe I need to write things down.
Anyway...thanks again for your replies. I'm just trying to sort all of this out. Now I'm wondering why they didn't do chemo with the radiation. Maybe another think I should write down for the doc.
Ok, now that you all probably think I'm a crazy maniac that doesn't know her butt from a hole in the ground I'll sign off.
Tavy
Tavy, don't be so hard on yourself. You didn't do anything wrong. You relied on your healthcare professionals and that's who we have to trust to treat us in the best possible way. I was diagnosed with CINIII in 2006 and had a large LEEP excision along with an ECC. Both confirmed CINIII and no clear margins. Prior to the LEEP, my GYN recommended a hysterectomy. He said, however, that I should first see a GYN/ONC to confirm his treatment plan. My ONC was less aggressive with her approach. She felt even though the LEEP did not produce clear margins, that there was a great probability that they got it all. Concurrently with the dysplasia, I was also battling DUB (dysfunctional uterine bleeding) for 9 years. I had the Mirena IUD but that had to be removed prior to the LEEP. A sonohystogram showed polyps in my uterus. My GYN suggested, again, a hysterectomy, but my ONC said "no", suggesting I was too young for major surgery (36). So I had the LEEP, and 6 months later had a uterine ablation. I have had 1 normal pap in 2 years. I'm hopeful that the dysplasia is gone for good and that my uterus continues to just sit there and behave. Time will tell.
My 11yr old daughter is going for her 3rd Guardasil shot in July. I am contemplating getting the vaccine as well, per recommendation by my ONC. I'm hoping insurance companies will start to approve it for those over 26yrs old. Just as a precaution against those HPV strains I don't currently have.
It is a scarey ordeal- to be faced with having to make some major decisions about your own health. We rely on our doctors to treat us as they would treat their own family. In the end, we are our own best health advocate. I have learned that I need to education myself about HPV and dysplasia so I am comfortable with the treatment plan and can fully put my life in my doctors hands. If you don't have that confidence in your doctor, please find one that you can fully trust before you are faced with any further decisions.
Wishing you best health,
Michelle
Dear Tavy - I am so sorry to hear about the loss of your mother. What a terrible tragedy. I know it hurt to lose her and to be without her during this scary time in your life. I'll say a special prayer that you are able to feel her close and hear her wisdom.
Please don't feel stupid or think you have screwed up. We don't have medical degrees and we have no choice but to rely on what we are told. I'm so glad you have found a caring medical team to help you now. That will make all the difference in the world.
Take care of yourself and know that this time in your life will pass soon and better days are ahead! Best wishes!
tavy, i'm going to echo the other women in saying you need to be easier on yourself. we rely upon our doctors to provide us with the 'right' information; they're the ones who have the medical expertise, and they're supposed to be educating us. they 'should' be following standard protocols.
having had a cone biopsy prior to the hysterectomy shouldn't make a difference as to recurrence at this point, but it may have made a difference as to how they proceeded. also, if cancer was found at that point, with the cone biopsy, hopefully the gyn would have referred you to a gynecologic oncologist to do the hysterectomy and any additional needed treatments.
yes, definitely write down all your questions prior to talking with the doctor so that you can stay focused on those questions and be sure they're answered. and, if you're not sure if you'll remember the info he's telling you, write that down as well.
i'm sorry to hear you're dealing with so many side effects from the surgery and radiation/chemo. have you discussed HRT (hormone replacement) to help deal with the menopause symptoms? and, i would encourage you to talk to your doctor about all the other bowel issues you're dealing with as well, and hopefully he can give you ways in which to feel better.
I never had a cone biopsy done but I should have a long, long time ago. IF I had gotten one maybe I wouldn't be fighting this advanced of a cancer.
Do your research on hysto's though. I did extensive research. Getting one shouldn't really be based on your age. Should be based on your case. In MOST cases, it seems like chemo/radiation combo for cervical cancer is the best option. I did hours and hours of research to see why my oncology team was insisting that no hysto was needed for me. Know what risks are involved either way before you go with whatever you do.
I know it has been a month since your post but I am in the same position. The ob/oco wants to do a cone to determine what type of hysto I will receive. Cone on July 14, hysto on July 16. I am CIN111 borderline invasive cancer, but the doc says it's not cancer. Is it normal to do the cone before hysto? What was your outcome?
Hi infoforme62,
I had a total hysterectomy followed by 8 weeks of internal radiation therapy. The doctor did not do a cone biopsy prior to surgery. He also told me I didn't have invasive cancer. That's where the problem came in. My gynecologist oncologist told me that had the original gynecologist done a cone biopsy (very standard procedure before a hysterectomy when CIN III is present). The cone biopsy would have shown that I have invasive cancer and that I would have had needed a radical hysterectomy and not a total. And, I would not have had to have radiation therapy. The size of my tumor was very small (3mm x 7mm). I have now seen several doctors who all agree that have a radical hysterectomy been performed, radiation would not have been needed.
Before my surgery my family doc, who did the pap, said it wasn't cancer. The next two gynecologists said, it wasn't cancer. They were wrong. I'm not saying you have cancer, but I am saying get that cone biopsy :) One little test can make all the difference in the world when it comes to your well being. I wish I had gotten a second opinion before surgery.
Good luck and please let me know your results!
God Bless,
Tavy
HI,
I to was at 27 was just diagonosed with cin stage 3 I am scheduled to go in and have a leep procedure. I am so scarred about this i have always had regular check ups and no adnormal pap results in gact i just had a pap test 11 months ago that was completly normal so i was suprised when this came back my doctor said to go with the loop procedure but all cases are diffrent for all i know that could be next for me I hope that everything goes good for you
hi tavy i also had cin 3 first i had a leep because of dyplasia and abnormal paps.last year i was diagnosis with endometrial cancer stage 2 ib1 ,i had a radical hysterectomy with resection and staging so i,m takeing it one day at a time i was moved by your letter i,ve never typed a letter before in my life .but i had to respond to your letter hang in there god will see us through .jeremiah 30 ;17 saysfor i will restore health unto thee,and i will heal thee of thy wounds, saith the lord because they called the an outcast;this is zion
The Cone Leep often follows the Leep since the Leep treats the cervix (outside of the uterus) and the Cone Leep actually goes inside your uterus as well, so it gives the doctor more information to work with. Does that help? If there are abnormal cells outside the uterus, the doctor may want to rule out the possibility that there may be cancerous cells in your uterus. This is why I had the Cone Leep. Still waiting for results...
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