Has anyone here been treated for cervical cancer and not had to have a hysterectomy?

Your correct in noticing
Your correct in noticing that a hysterectomy is the normal path docs choose when there is a cervical ca diagnosis. This is to ensure that all the bad cells are removed. I've read that there is a surgery they are performing these days in which they do a partial hyster., so that fertility is not damaged. This is only an option in very early stages that don't require radiation as part of the follow up protocol...that itself damages the ovaries. Talk with your doc and see what they say. If I can find the article, I will post it for you.
What stage have you been diagnosed with?

Radical Trachelectomy with Pelvic Lymphadenectomy
Hi there, RR!

Hope you are doing all right, all things considered.

Answering your question, I have had an aforementioned procedure. It is one of the fertility-sparing operations, for women who have an "overwhelming" (says so in a booklet!) desire to keep fertility, or who are considered too young, too fit, with cancer too small to really do a hysterectomy.

I have been diagnosed with squamous cell carcinoma in 2009, aged 25, and even though I actually specifically stated to my GINO I wanted a hysterectomy, I was referred for trachelectomy. I was assured that recurrence risks are the same as with hysterectomy, scars are smaller, recovery easier, because of the "novelty" factor of the operation, the aftercare is better, and, should I ever reconsider on children -- fertility pretty much uncompromised. One downside -- delivery will have to be via cesarian. But given the current trend of "birth scheduling" some women could consider it a then-free bonus. So, anyway...

I went for it. For myself can honestly say, that, at least for now, I only occasionally regret it. Still have no desire for children (even though have been happily married for a while). And still have periods. Am still fussy and cranky and generally annoying when having them. Still on the pill. Sometimes have swollen lymph nodes -- if it is too hot outside, or if walked too much -- but they usually subside overnight.

Operation went smooth (so I was told -- slightly embarrassing, as I was telling everyone in the theatre about my bag fetish and demanded that all my stitches should be tied in bows, but hey!), with no need of blood transfusion, took around 3 hours, and consisted of 2 parts. First, the actual lymphadenectomy, done laparoscopically. 4 small incisions on your abdomen: 1 in belly button, 1 in pubic hair (lower, than I thought it would be), two on the side that have now dissolved completely. Then, if all is well there, and there's no sign of lymph node involvement, they cut out your cervix, leaving 1 cm closest to uterus behind, and sew your vagina to your new cervix. Depending on your surgeon, they can do it vaginally, or abdominally, and depending on the center preference, they can already put in a "stitch" like you would put on a balloon to keep in inflated. I had it vaginally, and with a stitch (done in London, UK, but some docs in the States don't put a stitch in until after you get pregnant).

Recovery was a real shock though. It might have been a slightly clouded state of my mind that caused it, but I went into a panic attack mode after seeing myself, for the "inflate you with gas" part of laparocsopy completely slipped me. And, seeing myself in a state of "marshmallow man" made me think something went horribly horribly wrong, to the extend of needing sedatives, oxygen etc. And I kept having panic attacks for about 6-8 weeks after that -- even after deflating, so if you go for this option (you can still have it abdominally), do remember to look at the "scary" pictured online, or ask your doc to show you some, to be prepared. A mix of lymph drained from the node removal and the gas they inflate you with will make you look HUGE! Especially the first 10 days, and as you start walking around.

Other than this "freak" state of mind, recovery was smooth -- 4 days in hospital, then home. All results were good, including that there actually was no cancer whatsoever in the tissue that they cut out. Turned out it was all removed with LLETZ i had before, to see if my "abnormal smear" was that abnormal.

As side effects I didn't like, can list the following:

1) My vagina actually got tighter. Do not know how or why it happens, but there are reports, that even though you do not have radio, you get the "stenosis" feature. Doctors put it on psychological effects of cancer, or on scarring due to "intravaginal" operation. It does get better, but you do need to work very hard on it. For me, took almost a year to stretch it to previous size.

2) Spotting. Started about 12 weeks post-op, on what would be the "ovulation" period. No smell, just nasty brown discharge. No sign of malignancy, no one knows why. Was told to change pills (was on Dianette). Same on Yasmine -- except with horrible migraines and a desire to kill self. Went on Yasminelle -- after about a months spotting stopped. After 9 months on Yasminelle went back to Dianette -- no problem.

3) Nerve damage. For about 6 months post-op, had no feeling in my right upper leg. But it did come back, even though I have been warn that it could be permanent.

4) Stomach and digestive system have actually gotten much more sensitive, and very easy to upset. Do not know why, but could be due to too much exposure to general anaesthetic -- I have a reaction to lignocaine, so EVERYTHING had to be dome under general. I had been put into "coma" 5 times in one months, so maybe just due to that.

5) Thrush. Asymptomatic, and just "lives in me". Been there for over a year now, does not respond to treatment. Possibly due to the "stitch" as a foreign body being present. If you go for a "no stitch at once" option you most likely wont have it.

6) Difficulty for follow-up. I have changed countries between operation and now, and in Spain they either don't do trachelectomies at all, or hardly ever. So I have to fly back to London at least every 6 months. But I do get MRI scans, istmic smears, ultrasounds, palpations and a friendly chat every time. And, they do ask you to report ANY kind of symptom or anything strange that you notice about your well-being, health, any attempts of pregnancy, outcomes. If I still lived around there, I'd probably be communicating with my doc more than with my mother! So if there is a centre near you -- fantastic. If not -- getting to clear a worry every time (and believe me, my first 6 months I was seeing a doc probably weekly or two-weekly!) can be very difficult -- operation as such is relatively new, very few women had it, and "and how was it for you?" chats just don't happen. I was at the end of my teether when I started spotting, even worse was when my doc said he personally has never seen it. I only managed to find a few women online, who had trachelectomy too, and who had similar side-effect months later!

Side effects I liked:

1) Improved orgasm ability. I was having an occasional "multi-orgasm" bout before, but it went "whoa!" after operation. Now an intercourse when I don't orgasm 5 times is a bad one! Most done in one go so far is 8. Once again, the doctors have no idea why. But then, my mom had same thing with hysterectomy...

I would be a wrong person to ask re child-bearing, but day-to-day life now is not very different to the pre-op one.

If you have any questions, at all, please do not hezitate to ask -- will be happy to share!