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cone biopsy v hysterectomy - CIN3 cone biopsy v hysterectomy - CIN3

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  #1  
Unread 01-05-2004, 06:10 AM
cone biopsy v hysterectomy - CIN3

I had an abnormal pap smear in Sept 03, followed by a colposcopy and punch biopsy in October. The results were CIN 1, HPV and CIN 3 (a supposed small area).

I had a LLETZ/LEEP in December (I live in the Australian outback, drs are few and far between and I have to travel a long way to get specialist medical care. Hence the gaps in treatment time). I got the results back today.

He said the margins of the cervical material taken were not clear and indicative of CIN 3 spreading into the cervical canal.

He told me I had two treatment options:
1. A cone biopsy (but I should be aware that they couldn't guarantee it would get all the CIN 3 cells and I may have to have a hysterectomy anyway)
2. A hysterectomy

I am leaning towards the cone biopsy, but I want some ideas of intelligent questions : ) I can ask the dr.

So far I want to know:

*why* he recommends the hysterectomy;

if the margins of the cone biopsy are clear will that guarantee the CIN cells are not further up the cervix;

what sort of hysterectomy he is recommending;

will the hysterectomy mean the risk of cervical cancer is gone;

will it mean I can still get some other sort of cancer (vaginal? I don't know! I need to know!);

Can anyone think of anything else? I'm a tad scared by the whole thing.

Any help sincerely appreciated.

Janie
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  #2  
Unread 01-05-2004, 09:15 AM
cone biopsy v hysterectomy - CIN3

Dear Janie,
this must be a stressful time for you - but nonetheless you seem to really be keeping your head on your shoulders.

Your questions look really good. I can't think of anything to add.


It isn't easy making decisions when you are facing a cancer issue.
I hope your dr gives you good clear answers.
  #3  
Unread 01-05-2004, 10:10 AM
cone biopsy v hysterectomy - CIN3

Hi Janie,

You sound really well-informed and your list is perfect.

Personally, I would lean towards the cone biopsy as well. It's not that much different from the LEEP/LLETZ, which I had, too. It is a litttle more invasive, but it also give a clear idea of what the margins look like. With the LEEP. there is that area of the part they cut out and of the cervix that is burned by the loop. It is difficult to tell exactly what was going on there for sure. With the cone, you don't have that so you will know for sure how invasive the dysplasia is. If the margins are clear, your doc can give it a chance to heal (which will also give your mind some time to adjust to the idea of a hysterectomy) and then you can see if it grows back abnormal or not.

You have so many more options with the Cone and you will know that you tried everything before you went in for the hyster.

If your doc thinks the cone will be safe for now, that is the one I would choose, but only you can make the decision and it sounds like you will make an informed one.

Hugs!
Nicole
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  #4  
Unread 01-05-2004, 10:59 AM
cone biopsy v hysterectomy - CIN3

Hi Janie,

First, I'm sorry to hear that you are having to face additional procedures. This must be a very scary time for you.

I highly recommend that you check out our Cancer Concerns forum here at Hystersisters. The ladies there really are the experts on cervical, endometrial and ovarian cancer ... and they'll be able to share from personal experience. Here's a link to that forum:

Cancer Concerns Forum

I have not had cancer, so I can't begin to know how you must be feeling or how difficult these treatment decisions must be. But I'm sending gentle hugs your way and a few extra prayers.

Please keep us posted on what you decide and how you are doing.

Beth
  #5  
Unread 01-05-2004, 01:57 PM
cone biopsy v hysterectomy - CIN3

Thanks very much for your kind and considered replies, I appreciate them.

Yes, it sure is a darn rotten time right now - I seem to be clobbered on all fronts. Health stuff, personal stuff, it's darn hot here right now and generally life seems to not be as pleasant as one could hope for.

I'll wander on over to the other board and have a look - thanks for the pointer.

Janie
  #6  
Unread 01-05-2004, 02:18 PM
cone biopsy v hysterectomy - CIN3

When I got mixed results late this past September-- general doctor's pap smear came up severe, gyno's came up mild in July -- my gyno first opted for a laser surgery. However he realized, with my prodding, that it would be the third laser and he leaped right from there to recommending a hysterectomy. Too big a leap for me! So I asked him for other options. It was only then I learned there was such a thing as a cone biopsy, never even was told about the LEEP. To make a long story short, I opted for the cone biopsy and had it in late October. The results came back November 6 with widespread carcinoma in situ in the sample as well as in the deep margins. He was shaken I think that he almost missed it by the laser choice because my hyterectomy took place less than three weeks later.

The thing is, when the results showed the carcinoma, he told me I had taken the wrong choice. I am 6 weeks post-op tomorrow and one thing has been consistant for me. I AM GLAD OF THE CHOICE I MADE because when I did have the hysterectomy I was able to deal with the problems involved in the recovery time with less stress because I was able to research about my diagnosis and knew that I had taken all the steps I could take prior to the surgery.

I am just thankful for my regular doctor since it was his concern that put the steps in place to catch this carcinoma at such an early stage. Choose what is right for you from what you know about yourself and what you learn. That is the only way to deal with all this with the least regrets.
  #7  
Unread 01-08-2004, 09:01 PM
cone biopsy v hysterectomy - CIN3

Can someone hlp me to understand this, please? I also have CINIII.
1) Had abnormal pap
2) Had biopsy in September
3) Biopsy showed Severe Dysplasia
4) Had Leep done in October
5) Margins not clear

My GYN told me dysplasia/CIN III is deep in cervial canal and said he recommends hysterectomy (keep ovaries).

I went for a 2nd opinion in December and GYN told me to wait and watch.

I'm starting to worry that while the Leep results show no malignancy that maybe a cold knife biopsy or hysterectomy may reveal something different. Is this true? or am I confused?
  #8  
Unread 01-08-2004, 10:07 PM
cone biopsy v hysterectomy - CIN3

Hello Ursx5,

I posted this same question on the cancer part of this board - go have a look at the responses there too.

I feel your pain, I know *exactly* how you feel.

I have opted to go with the cone (we are referring to it as Conan the Biopsy - stupid jokes make me feel better) and see what the margins are like. I'm not going to be rushed into major surgery without good cause.

A question I would have for the first dr would be "how does he know how deep it is in the cervical canal?" I would think he can only tell you the margins of the LLEP are not clear. But I don't know how he can say how far it is.

Best wishes to you,

JAnie
  #9  
Unread 01-08-2004, 11:06 PM
cone biopsy v hysterectomy - CIN3

Hey y'all.... I can understand the tremendous range of emotions! I went thru the same thing... I had a perfectly fine PAP the previous year and then turn up with CIN III a year later. I'm done child-rearing and had in fact talked to my GYN the previous year about tubal ligation, so when this cropped up, she said altho she hates to recommend major surgery she offered it as an option. What I didn't like hearing from her was this: that there was a high chance that she might not attain clean margins with a LEEP, which then would necessitate cone biopsy, which if that yielded clean margins, I still faced a 90% chance of recurrence and I would have to see her quarterly for ongoing colopscopies.

I then had a second opinion with a a GYN-Oncologist. She supported all that my GYN told me and after examining me, said that I had invasion in my cervical canal and that altho there was no way for sure her to know short of biopsy, that at first glance it looked rather invasive.

So..... recognizing that I am the type of person that hates (but does it) going to the GYN annually just because I don't like all that mucking around "down there" and sure couldn't imagine having to go in every 3 months and more procedures, etc and also because I'm a worry-wart and didn't want to have this potential cancer hanging over my head, I opted to have the TVH.

These are just my thought processes and I know everyone is different. I share because I care and maybe it will be helpful to you.
  #10  
Unread 01-09-2004, 06:35 AM
cone biopsy v hysterectomy - CIN3

(((Libbytish)))

Thanks for sharing your thinking process. You're right, everyone goes about it differently, but I think it's helpful for women to see it from other women's perspectives, too--I think it broadens our view of things. I'm happy you've come to a decision that you and your doctor are comfortable with.

I did want to make a couple of comments though. Are you sure your doc said you had a 90% chance of recurrence? Perhaps that is true in your case (because we know that every woman and every situation is different), but the general statistics show that in women with cervical dysplasia who obtain clear margins with a cone biopsy, 80-90% of them are considered to be cured after the cone. So, in general, only 10-20% of them will have a recurrence that would necessitate further treatment.

Also, even when a woman has a TVH/TAH for CIN3 (or any cancer/precancerous condition), the standard of follow-up practice is to have a PAP every 3 months for the first 2 years. Some docs then continue every 6 months for the next 3 years, and some will switch to yearly (that part seems to vary--mine will actually be every 6 months for life), but the TVH probably won't get you out of quarterly visits. The reason behind that is because when the docs remove the cervix, there is no guarantee that all of the cells that are near the area where the cervix is connected to the vaginal wall are removed. Parts all run together in there, and there are no dotted lines to say where one part stops and another part starts, and no dotted lines to tell the abnormal cells where they are not permitted to cross. This is not frequently a problem, but it does pop up, and on a rare occasion a woman will turn up with vaginal cancer (could be true vaginal cancer started by HPV, or could be remnants from the abnormal cervical cells left behind). Regardless, follow-up is SO important. Please check with your doctor on what your follow-up will be.

I wish all of you well--those who aleady know what they're doing and those who have not yet decided. Whatever your choices, you know we are here for you.

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