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Old 09-24-2007, 01:30 PM   #1
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annamama99 HB User
Avoiding hysterectomy - adenocarcinoma

Thank you to everyone on this site for making me feel that I am not alone....
I was recently diagnosed with cervical adenocarcinoma in situ through a pap and colposcopy. (No previous abnormal paps, no history of any risk factors and a normal pap 9 mos ago)

My cone biopsy (2cm x 3cm) came back with clear margins, and no more than 2mm past the surface of abnormal cells. My ob/gyn is pushing me to schedule hysterctomy ASAP. I just had a baby 3 months ago and also have a 2 yr old. I am afraid of this surgery and the recovery time - with the 2 little ones I don't have time to give to recovery, and REALLY don't want to give up breast feeding. I am nervous about the removal of my uterus, even though I am 90% sure that I do not want more children.

I understand the attitude of why take the risk, but is this surgery truly necessary? Are there any other options?
Thanks for any input
anna

Last edited by annamama99; 09-24-2007 at 01:40 PM. Reason: incomplete

 
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Old 09-24-2007, 08:04 PM   #2
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ames72 HB User
Re: Avoiding hysterectomy - adenocarcinoma

Hi, welcome. I am in a similar situation. I also had AIS and also microinvasive cancer (very minimal) that was removed by cone in May. My doctor recommended a simple hysterectomy. I went for a second opinion and that doctor recommended 100% NO hysterectomy. He said I was treated, and although he would love to do surgery on me because he has a cool robot that is very minimally invasive that it was unnecessary (a little humor don't take it the wrong way). I went with his recommendation. I really liked him - I was referred to him by a friend of mine whose life revolves around cervical issues (she is a nurse and this is her specialty). SHE even told me she would recommend the hysterectomy!

I just went for my 4 month post-surgery PAP last Weds and I am awaiting my results. Bottom line is I think it is a PERSONAL decision that must be taken very seriously. Also I think you should get at the very least a 2nd opinion. All of our cases are very different, even though they are the same... and you really need to weigh all of your options because it is a MAJOR surgery. I personally have a strong belief that in instances such as ours we have a chance to change our lifestyle and beat it without undergoing the surgery. But again, it is a personal decision.

We'll see how my philosophy pans out Good luck.
-Amy

 
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Old 09-24-2007, 10:00 PM   #3
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merca_1 HB User
Re: Avoiding hysterectomy - adenocarcinoma

Hi Anna,
I have a 5 month old and I had a normal pap 9 months ago too. Now I have an ASCUS which is an uncool pap result. What is the deal? I am so upset that this is happening.

I have read a ton of stuff on the internet and there are a few articles that speak about the hysterectomy as a way to be more-assured that you are cancer free.

I know it sucks sooooo bad, but feel so entire blessed that you have 2 beautiful babies!

Take care,

PA

please let me know what goes on - i am right there with you,

 
Old 09-25-2007, 12:51 PM   #4
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Re: Avoiding hysterectomy - adenocarcinoma

Quote:
Originally Posted by annamama99 View Post
Thank you to everyone on this site for making me feel that I am not alone....
I was recently diagnosed with cervical adenocarcinoma in situ through a pap and colposcopy. (No previous abnormal paps, no history of any risk factors and a normal pap 9 mos ago)

My cone biopsy (2cm x 3cm) came back with clear margins, and no more than 2mm past the surface of abnormal cells. My ob/gyn is pushing me to schedule hysterctomy ASAP. I just had a baby 3 months ago and also have a 2 yr old. I am afraid of this surgery and the recovery time - with the 2 little ones I don't have time to give to recovery, and REALLY don't want to give up breast feeding. I am nervous about the removal of my uterus, even though I am 90% sure that I do not want more children.

I understand the attitude of why take the risk, but is this surgery truly necessary? Are there any other options?
Thanks for any input
anna
Oh honey,
I am sooo sorry you are going through this. 1st, let me tell you the hysterectomy is not bad at all. It is not as horrific as you might imagine. I had a trachelectomy, which is practically the same and was out of the hospital in 3 days. The 1st week is pretty bad, I must say, but after that, it gets much easier. I am assuming you are young and otherwise in pretty good health. You will get through it fine. It is the best thing to do if you are sure you do not want more children. I was diagnosed with stage 1b cerv cancer 3 months postpartum. My cone biopsy showed clear margins as well, but after surgery, they found cancer in 1 lymph node. I was soooo happy it was caught early even though I still had to go through chemo and radiation. You do NOT want that. You can avoid all that and play it safe. That is just what "I" would do. Of course, it is your life and your choice to make.
You should DEFINATELY speak with a gyn/ONCOLOGIST. They are the experts, and get a second opinion. See what he/she has to say and go from there. I wish you well whatever you decide and keep posting here on your progress.
HUGS,
Sharon

 
Old 09-25-2007, 02:53 PM   #5
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Re: Avoiding hysterectomy - adenocarcinoma

hi annamama,

I agree with sharona about consulting with a gyn-oncologist. I am a bit unclear regarding the 2mm past the surface...do you mean that it was a 2mm invasion or do you mean the margins were 2mm away from the abnormal cells?

At any rate, the decision is up to you regarding the surgery. One possibility may be to monitor with pap smears, colposcopy and ecc until your children are older. I had a vaginal hysterectomy, my kids were just 4 and turning 3 at the time. I was fortunate that my husband was able to take 4 weeks off while I was recovering.

I do think your best bet is to get a second opinion consult with a gyn-onc and go from there. Good luck.

 
Old 09-27-2007, 09:05 PM   #6
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annamama99 HB User
Re: Avoiding hysterectomy - adenocarcinoma

Quote:
Originally Posted by ames72 View Post
I went for a second opinion and that doctor recommended 100% NO hysterectomy.

I just went for my 4 month post-surgery PAP last Weds and I am awaiting my results. Bottom line is I think it is a PERSONAL decision that must be taken very seriously. I personally have a strong belief that in instances such as ours we have a chance to change our lifestyle and beat it without undergoing the surgery. We'll see how my philosophy pans out Good luck.
-Amy

Amy -

Thank you so much for this post!! While I understand and respect the choice to have a hysterectomy, I agree with you that it is a chance to re-evaluate all aspects of my life (nutrition, exercize, mental emotional issues, spiritual issues etc..) and make changes for the better. I truly believe that changes in these areas CAN change the physical as well! I was reading so many things that just jumped straight to hysterectomy - I was really doubting my desire to look into alternatives to surgery and thought perhaps I was crazy to even think of not doing it.

I have an appointment next week with a top gyn oncologist (outside of my insurance network). I think that my doctor is pushing it for the business end -it will cost Kaiser a lot less to do the surgery than it will to do all the follow up testing and god-forbid further treatment at a later date. I hope to get all of my questions answered and make the best decision possible. I feel that I am in a good spot - detecting it early and having no invasion and a very small amount of abnormal cells. We'll see.

Have you received the results of your pap yet? Iam hoping for good news for you.
Please keep posting - I need the support of like minded women.
Anna

 
Old 09-27-2007, 09:12 PM   #7
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Re: Avoiding hysterectomy - adenocarcinoma

[QUOTE=karen32;3226310]
I am a bit unclear regarding the 2mm past the surface...do you mean that it was a 2mm invasion or do you mean the margins were 2mm away from the abnormal cells?

I had a vaginal hysterectomy, my kids were just 4 and turning 3 at the time. I was fortunate that my husband was able to take 4 weeks off while I was recovering.
QUOTE]

Karen -

Thank you for sharing your experience. I would love to hear more about your experience with the surgery and recovery. I'm am seeking every available option before surgery (appt with gyn oncologist next week) but want to be informed if it looks like surgery will be the best option. I am very concerned with the recovery. With a 2 year old and an almost 4 month old I don't know how I can do it. My husband would not be able to take any time off and he works nights/sleeps during the day so even if he is home he's not really available to me or the kids.

As far as I understand it- they took a 2cm x 3cm cone and the margins were clear, the abnormal cells were non invasive and did not extend more than 2 mm past the surface (outside portion) of the cervix.

Will get a better understanding of the results next week.

One more thing - if you've got a moment - how did having a hysterectomy change your life?

Thanks
anna

Last edited by annamama99; 09-27-2007 at 09:13 PM. Reason: spelling

 
Old 09-28-2007, 02:22 AM   #8
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Re: Avoiding hysterectomy - adenocarcinoma

hi annamama,

I'm glad to read you are going to see a gyn-onc. Definately discuss the option of vigilant follow ups if you want more children.

I know in the past a hysterectomy was recommended for AIS because there were concerns about skip lesions. However, I'm not sure if that still holds. Be sure to let the gyn-onc know your honest thoughts on fertility, and also let him/her know about your current situation and the difficulty having such a surgery right now would present.

Personally, with my recovery when my kids were the age they were, it was hard. As I said, I was very fortunate that my husband was able to be home. It was hard not to lift the children when they wanted a hug, and I was very tired for awhile. It was hard to stay put and not try to do a bunch of things. I had no external scars because my surgery was done vaginally, so there was no visible reminder to keep me in check. But my body sure did let me know when I had overdone things - I'd be in bed for awhile resting after that. My *immediate* physical recovery took the whole four weeks. Some women bounce back faster, I did not. My complete physical recovery took about one whole year. For awhile I found sex to be painful, but around the one year mark things settled down and everything became comfortable again.

How did it change my life? Well, I am more confident that I will continue to be healthy. There is a chance that the abnormal cells will recur on the vaginal wall or vulva; however there was a greater chance they'd recur on the cervix, and since I don't have one anymore... I do not miss my period at all, although I do still cycle, and I know when I am ovulating, etc. Every so often I will get the moodiness that often accompanied my pms before surgery. But, the actual period? good riddance to that! And really, that is about all of my life that it changed. We were very certain that our family was complete, so future fertility wasn't an overwhelming issue for us. Every once in awhile I will long to be pregnant, but I think that is a natural feeling that is part of being a woman.

There are women who have had the surgery done with infants/babies, however I think in those cases it is urgent, whereas your case may not be *as much* (disclaimer: I am not a doctor! and I am not saying your case may not be important!). I have read of women who have had AIS who are monitored very regularly so as to catch any potential abnormalities. The thought is usually "i'll get the surgery done, but I want to try for a baby first". I also know of another woman who had stage 1a1 adenocarcinoma, had two cone biopsies, one with lymph node dissection, and went on to have a baby.

Okay...a little long winded, just got home from work to a quiet house and started typing. I hope this helped a little. Let me know if you have any more questions, I'm more than happy to answer them.

Last edited by karen32; 09-28-2007 at 02:24 AM.

 
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