CIN 3 cone biopsy v hysterectomy

I posted this question on another section of the discussion board here, but it was suggested I also come here and ask.

I do hope I'm not contravening any posting guidelines, I would just appreciate some help with framing questions for my dr from those who have gone through this before me.

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 at 6 o'clock just near the cervical opening).

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 cells spreading up 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, or indeed in the uterus;

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

hi,
I read your post questions and although I'm afraid I don't have any medical experience, I might just offer some thoughts.
I too once had a culposcopy for an abnormal pap but no cancer cells were present. I had a biopsy and subsequent treatment.
I recently had a laproscopic supra cervical hysterectomy with tubes and ovaries removed as well. This was for fibroid treatment, heavy and painful periods. The ovary removal was because I have breast cancer (dcis, lcis stage 0) and was at a higher risk for ovarian. What I can tell you to ask the doc is this about percentages. What percentage of woman will be cured with just the cone procedure? What is the likelihood in terms of numbers that they will need to do hyster after all? And then ask yourself the questions? Are you near menopause age anyway?
Do you have or want children? It may be best to get it over with in one shot right now or it may not. Only you can answer that question. Good luck.
colleen

Yes, I guess I should have included that information -

I'm 44, I already have two children, don't intend having any more (at least not of the two-footed variety! Four hooves, and a mane and tail is fine!) and previously I would have said I have no trouble with any health issues. I have normal periods, normal everything. Just not a normal cervix

's Janie! Welcome to Cancer Concerns!

You're doing the right thing by asking all of these questions. A hsyterectomy is major surgery, and you should always consider carefully before undergoing major surgery.

I'll share some information that might be helpful to you. It might answer some of your questions, and it may help you come up with more questions to ask your doctor. Please consult carefully with your doctor before making any decisions.

It sounds as if your doc is offering you 2 treatment options. A cone biopsy is similar in nature to a LEEP--it removes part of the cervix. The cone is done with a scalpel, though, instead of with laser, and it takes a wider portion of the cervix. What's nice about that is you have a larger sample to check for abnormal cells, so if they are a little more widespread, you might pick them all up. The LEEP can sometimes "blur" the edges of the sample, so it can be difficult to see the margins clearly, however, the LEEP also cauterizes nearby cells (to minimize bleeding), so frequently more abnormal cells are destroyed that were left behind during the LEEP. Since the cone tends to have a clearer margin, it is sometimes easier to know if there are more cells left behind, or if it is likely that all were removed during the procedure.

After a cone biopsy, 80% of women are considered to be effectively cured. Most never have another problem. Some of us do continue to have ongoing problems and eventually end up with a hysterectomy. You could have your cone, find out that your margins are still not clear and then end up going with the hysterectomy. You could have the cone, and the pathology could say you have clear margins, but the dysplasia could return or you might have a separate area of dysplasia that is outside of the sample removed, which would then evolve into a separate issue. So, if you go with the cone, it will be very important that you continue close follow-ups which are typically done every every 3 months for the first 2 years after the procedure.

I avoided my hysterectomy for as long as I could. I had several procedures to keep things at bay, and finally had no choice. I was sad going into surgery, but things have turned out all right for me. I kept my ovaries, and they are still going strong, so no need for hormones for me right now.

If you opt for the hysterectomy, you could be a candidate for a vaginal hysterectomy if you haven't had previous abdominal surgeries. Mine was done abdominally because I'd had 5 C-sections and it was assumed there would be lots of adhesions that would make a vaginal hysterectomy impossible. Also, you'll still need close follow-up with your doc. Most follow the PAP every 3 months for the first 2 years, then every 6 months until 5 years. Ask your doc what your follow up will be. The purpose there is to check to be sure you do not have a recurrence on your vaginal wall (your cervix will be gone, so it can't grow back on your cervix, but your vaginal wall is still slightly vulnerable). Unfortunately, there is no "dotted-line" inside of us that tells the docs where to cut, or tells the abnormal cells that they can't cross. The docs try to take a wide enough circle of tissue at the point where the cervix is connected to the vaginal wall (after the cervix is removed and the area stitched up, is called the vaginal cuff), and hopefully all of the abnormal cells fall within the removed area. Once in rare once in a while, some cells stay behind and grow on the vaginal wall. So close follow-up is important.

If you decide to try the cone, consider doing what you can to boost your immune system. HPV is a virus, similar to a few other viruses, and most women's immune systems are able to fight it off. Get plenty of sleep. Eat well and take a multivitamin (consider taking folic acid which may help as well). Exercise moderately. Pray, meditate, or do yoga. All of these things are believed to help our immune functioning. If you can fight off the virus, you may not have a recurrence in the future.

Unfortunately, you won't know if you pick the right option until the procedure/surgery is complete. Healing time from a cone is short--most women are back to work within a day or two (ask your doc about your situation). If you have the cone and the pathology indicates you should continue with a hysterectomy, most docs insist that you wait 6 weeks from the time of the cone before you have a hysterectomy. This is to allow your body to fully heal from the cone and decreases post-op complications. In general, initial recovery from a hysterectomy is 6-8 weeks, but it can take up to a full year for full recovery. You might like to ask about anesthesia and such when you talk to your doc (for both cone and hysterectomy).

Good luck, Janie! I hope this is not too much information for you. Please come back and let us know what you decide to do. Let us know if you have more questions.

Jeanine, I could just hug you. That is so much information and it's everything I wanted to know. Okay, probably not *everything*, as I am an obsessive researcher and will always find more questions ... but it is an excellent help. Thanks!