I recd an adnormal pap back in Jan 29,2010 a week later I did the Biop (leep) that resulted in a high risk for cancer cells (Adenocarcinoma) so my gyno referred me to a gyno/oncologist. I had my first (CKC) Cone Bio two weeks ago. The results showed that the samples taken showed cancer tissue that exceeded the margins but were not invasive (at site), but then he said that my Adenocarcinoma in situ has skip legions which means it might not look invase at the cone site but in fact the Skip legions run along the top of the tissue and then cut down into the lower levels and then come back up later on down in the tissue. So my uertus and surrounding areas could look clear from cancer but with these skip legions there is no telling how far they can go down and then up and into surrounding areas . He wants to perserve my right to have kids in the future if I want but he did press that he would suggest for a full Hyst (everything). But he suggested I do another cone (CKC) and see what results we get from that and also allow me to make a decision about trying to have kids one day or to complete the hyst. He said the only way to completely be rid of this cancer and future scares would be a hyst. He can not assure me that 10 yrs from now this cancer will not pop up in another area, stronger and more aggresive. He also said I could have normal paps at the cervix but infact the cancer could be spreading.
My question is anyone been at this stage and did you go ahead with the hyst. I am having a hard time deciding b/c I dont have any children and being 31 I am not sure if I will or will not want them in the future.........
Do I go ahead with the hyst and know that this issue is behind me or go in for cones and paps, maybe have a kid(s) and hope this condition does not spread or get worse?
Welcome, and sorry to hear about your diagnosis. I was diagnosed with Stage 1a2/1b1 adenocarcinoma in Jan of 2009 (so, actual invasive cancer). I chose to have a trachelectomy (near complete cervix removal) rather than a hyst, so as to preserve fertility. If your gyn/onc is suggesting a repeat CKC, then I would definitely go with that and see what the pathology shows. Although many/most gyns and gyn/oncs will say a hyst is the safest bet that this cannot return (and of course, it is THE safest), current research is leaning towards just repeat CKC's or trachs as treatment for AIS and even early invasive cancers for women wanting to preserve fertility. Even at my stage one gyn/onc offered me a repeat CKC rather than the trach. I still sometimes regret not going that route, although now I am pretty comfortable with my decision. If you choose not to have a hyst, you will be followed every three months for the first 2-3 years, then every six months for another 2-3 years, and after five years they say you can go back to yearly paps -- although I personally don't think I will ever feel comfortable going less than twice a year.
It's true that skip lesions can occur further up and be "hiding," and unfortunately it's also true that you can be clear now and something can come back in the future, but if you are followed closely AND you keep your appointments, then they should be able to catch any problems before they get out of hand (if you are unlucky enough to have continuing problems). The one "good" thing about having a trach is that I have very little cervix, and my gyn/onc can actually get a very good look at what's going on and get a good sample for my pap, and there's also very little tissue for anything to be hiding in -- meaning it is easier to keep an eye on what's going on with me (plus with less tissue, that means less chance of something being infected).
I'm sure some other ladies will jump in soon to share their experiences with AIS and how and why they chose the treatment they did. I'd definitely explore the repeat CKC and/or trach option, especially if you are uncertain as to whether you want children in the future.
I think Zoe just gave you some really great info. I don't have too much to add. I was diagnosed with AIS last year (found after a LEEP) and I'm still at the point where I go for three-month check-ups. If more was found in my case, I know that I would choose either a cone or a trach (I'm 34, no kids). I'm even leaning toward just having a trach at the end of my child-bearing years rather than having a full hyst.
Anyway, one thing I wanted to add is that I've heard of one case where a repeat cone took so much tissue that a trach was no longer an option. That's something you should bring up to your doctor if you choose to go that route.