Adenocarcinoma

Hello strong ladies.

I have been reading here and there for a few weeks. I am so impressed with the strength and dignity that the members here have when dealing with such difficult issues.

I was diagnosed with stage 0 cervical cancer a few weeks ago after a cone biopsy. I just received my "second opinion" from Stanford today and they confirmed adenocarcinoma. It is in situ but from what I have read, this type can move to invasive quicker than squamous. I did not have "clear margins".

I was hoping to meet with my doctor today and have him tell me what to do. Instead he gave me options that make me frustrated. He said the safest route would be hysterectomy but we could also do more, deeper cone biopsies and just keep checking. While I'm done having kids, I am frustrated with the pain, down-time, and possible long-term effects the surgery would bring if it is not completely necessary. On the other hand, I just want to be done with this.

So we tentatively scheduled a hysterectomy for July 8. At this point, even though it will ruin my summer, I am planning to do it. Better to lose a summer and nip it in the bud than to have it get out of control.

Jeanette
California

Hi, Jeannette, and welcome to Hystersisters! We are glad you found us. How terrific for you that this cancer was caught so early. I did not have the same cancer as you. My story is different but I can tell you that, in retrospect, the hysterectomy (TAH BSO) was really quite easy and the recovery time was also quite quick. Of course, not everyone's experience was like mine.

I do have a long ugly scar from my navel down to the pubic bone but hey, my bikini days are over (if there ever were any for me)! LOL

I am sure that a lot of ladies will stop by to offer their experiences and opinions. Whatever you decide to do will be the best for you and you once you hear from these ladies, I don't doubt that you will be better informed from those who have walked the same path as yourself.

Good luck to you, Jeannette. Let us know how you're doing.

Jeanette

I can imagine how frustrating this is for you.

IMHO you are done having children, and you want to make sure that you stay as healthy as possible to see them grow into adulthood. I personally would take the route that would make that most likely. I would have the hyst. You are very lucky your condition was diagnosed so early. Some of us have not been as fortunate.

Again, this is only my personal opinion. My TAH back in 2001 was not too bad. Definetely doable.

Let us know how you proceed. My thoughts will be with you.

Welcome Jeanette,

Congratulations on having caught this so early. That's great news whatever you decide to do.

I have a very dear and wise friend who has had breast cancer twice. After I was diagnosed with ovca last year she gave me some excellent advice - when you're first diagnosed treat it as aggressively as possible. Then you'll have no regrets later on about what you could or should have done.

Did you meet with another doctor for a second opinion? Or was that just a second opinion on your slides? I found it very helpful to get a second opinion and went with that doctor's treatment recommendation.

Good luck and best wishes to you. I hope the right decision - for you - comes more into focus for you.

Margot

I had a TVH for AIS. It turned out to be Stage 1a but the TVH was curative. The physical recovery from the TVH really was not that bad. Mentally it was tough. Best of luck with the surgery.

the hysterectomy is the easy part, i believe...i remember that i was up and about alot quicker than i was suppose to be and even driving my truck a week sooner...

the tough part was the chemotherapy and radiation which is something i hope you don't have to have...mine started 4 weeks after my surgery...

also, as the ladies before said, it is hard mentally, even when you're done having your children...my kids were teenagers when this all started...but you have such a change to your body and it takes a while to get use to the fact that your female organs are gone...i take a plant derived estrogen, (cenestin) and so far, so good...

if there is any chance of these pre cancerous cells returning and a hysterectomy would limit that chance, it might be something you should really think about...

anyways, just giving you my 2 cents worth...lol

take care and good luck in your decision

HI Jeanette!
I am in a similar situation. I recently had a cone and they found CIS/AIS...my margins were clear but they were very close. I was told that a hyster would be the option for those that are done with having children...since I am 26, I am going the conservative road (and trying to get pregnant now)...If I am not pregnant by Nov. they will do another cone to make sure that the margins are clear for sure...or to see if the CIS/AIS has returned or worsened. It sounds like I will still have to have a hyster (hopefully after having at least one baby...)The gyn/onc that I saw said that there is at least 10% chance that there is still AIS in the cervix now (or higher since the margins were close, and that is considered a fairly high percentage) and a 25-30% chance that the CIS or AIS will return...My doctor said that conservative therapy is possible (repeated cones and close follow-ups) but that the recommendation for those that are done with childbearing is the hyster due to the fact that the AIS can be tricky and that even with clear margins on a cone there is still a chance that there are residual cells higher up in the cervix. I hope that you can make a decision that you are comfortable with...please get lots of opinions and do what is best for you and your family...

Thanks for all your kind words and support. I know what I'm going through and am about to go through is nothing compared to most people on this board. We are very lucky in many ways.

My second opinion was just on my slides. I haven't seen any other doctors. I really appreciate the comments from other cancer survivors. My MIL also commented that she opted for a mastectomy over a lumpectomy and they found other cancer that they couldn't see with the mammography. She is a ten-year survivor now. I think the "aggressive route" is good advice and my choice is pretty obvious.

I've had two c-sections so I'm assuming the recovery will be the same or similar to that. My dh and I are talking about moving the surgery up because he may need to travel overseas in July. I'd like to get it over with and I'd also like to recover in time to walk in the Relay for Life in August!

Thanks again everyone,
Jeanette

The purpose of my original post was to see if anyone else had had multiple cone biopsies and then eventually had to have a hysterectomy anyway. I did not mean to whine about my situation! I had just come from my Dr. appt. and was frustrated and looking for more input.

Thanks again,
Jeanette

Hi Jeannette,

I, too, was diagnosed with adenocarcinoma in situ. After 2 cone biopsies (the first one had clear margins, and my doc wanted to make sure there none further up in the cervix did a second one and found that there was some residual cells residing further up) had a hysteretomy in Jan. 05. So it is common to have multiple biopsies in the case of adenocarcinoma of the cervix. It was also explained to me that AIS has a about a 20% recurrence. The recovery is pretty hard, about 6 weeks typically. I wish you the best!