Cervical Cancer: Long battle with endocervical carcinoma in situ and AGUS cells in uterus | HysterSisters
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Long battle with endocervical carcinoma in situ and AGUS cells in uterus Long battle with endocervical carcinoma in situ and AGUS cells in uterus

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Unread 02-23-2021, 06:42 AM
Long battle with endocervical carcinoma in situ and AGUS cells in uterus

My husband and I started trying to conceive in 2016 with no luck. I spoke to my gynecologist in 2017 and had an abnormal pap with high grade dysplasia. She did a colposcopy and endometrial biopsy and found carcinoma in situ on my cervix and AGUS cells in my uterus. We did a LEEP procedure then two weeks later, a D&C. She told me then that a hysterectomy was an option, but she “bought me time” with the other procedures to conceive. She did warn that the cells more than likely would return.

I moved out of state and had my son in 2019. I do not want any more children. My paps have been normal, but my doctor still does a pap with ECC every 6 months. In September, she did ECC and endometrial biopsy. Both came back with samples not sufficient for evaluation. She also mentioned going ahead with a hysterectomy due to my past. She stated if the CIS comes back, it can be hidden by the LEEP scar tissue.

I had my pap and ECC done yesterday and the doctor was reiterating a hysterectomy. She stated everything looks fine, but the likelihood of the cells returning and NOT being caught was high. She also mentioned that if I were her friend, she would recommend a hysterectomy sooner rather than later. When looking at my paperwork from yesterday, it says “Diagnosis: Endocervical Carcinoma in Situ.

I am only 31 years old and have had abnormal paps since I was 18.

Does anyone else have experience with any of this? I’m trying to not be alarmed, but I don’t know if I should be.
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Unread 02-23-2021, 04:48 PM
Re: Long battle with endocervical carcinoma in situ and AGUS cells in uterus

Hi, AEB16. I'm sorry you're having to deal with all of this.

It sounds like for now, at least, all is normal and everything you are talking about is just precautionary, which should be reassuring. There is time to explore all your options and decide what you feel comfortable with. It sounds like you have been following up carefully and consistently, so give yourself a pat on the back for that.

My diagnosis was adenocarcinoma in situ, which is handled differently than carcinoma in situ. From what I've seen, once carcinoma in situ is removed usually that is all the treatment needed.

Did you ever find out what were the results of your D&C? It sounds like it was the CIS that was causing the AGUS pap, and that your actual endometrium was fine, but I want to make sure I'm understanding right.

When in doubt, you can always get a second opinion. That's usually a good idea before any major procedure, anyway. I ended up talking to two different gyn oncologists before I had surgery, and even though they ended up agreeing with my primary gyn, I was glad to have done it anyway, it gave me more confidence in my decision.
Unread 02-23-2021, 05:45 PM
Re: Long battle with endocervical carcinoma in situ and AGUS cells in uterus

Thank you so much. The D&C did show AGUS cells in the endometrium, but the follow up biopsy was normal.

I just can’t help like feeling like I’m playing a waiting game for it to return. It’s frustrating.
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Unread 02-23-2021, 06:08 PM
Re: Long battle with endocervical carcinoma in situ and AGUS cells in uterus

It is frustrating, and I think one of the most important pieces here is knowing yourself and what will contribute most to your well-being.

I tend to be a "less is more" person, and would rather put off surgeries until they are absolutely proven necessary, and I'm usually ok with a certain amount of uncertainty that comes with that. But others find that the uncertainty or anxiety about something returning is too hard on the nerves, and that for their peace of mind it is better to take action immediately. There's not necessarily a right answer, its just what works best for you. You can only predict the future so far, and after that just make your best guess and know you did your best with the information at hand.
Unread 02-23-2021, 10:20 PM
Re: Long battle with endocervical carcinoma in situ and AGUS cells in uterus

My adenocarinoma was the next stage beyond in situ, so the surgery decision was pretty much made for me. As mentioned, your tolerance for the stress of ongoing testing and waiting for the other shoe to drop is something to be considered, as that isn't good for your mental or physical health, either. Getting a second opinion, from a gynecological oncologist if possible, might provide additional information and extra peace of mind.

We always say to do your own research, get as many opinions as you need, then do what you feel is best for yourself long term. Whatever you decide, we'll be here for you and help however we can.

Unread 03-02-2021, 07:15 PM
Long battle with endocervical carcinoma in situ and AGUS cells in uterus

Hi AEB16-I’m sorry that you’re dealing with this at such a young age. I, too, had trouble conceiving and had multiple endometrial biopsies that were all normal. My OB/GYN told me I could do nothing or have an ablation. I did nothing and ended up with stage 2 endometrial cancer that was at the point where the uterus meets the cervix. My experience is that a biopsy of one tiny area isn’t the best indicator of cancer. I would get a second opinion for sure, but I was 47!when I was diagnosed and that was considered young. I did IVF multiple times and it’s my feeling that the overload of estrogen may have played a role in my cancer. I’m grateful to have my son and to have my life (even if that meant my complete hysterectomy.) I wish you well-it’s a difficult decision to make.
Unread 03-03-2021, 02:41 AM
Long battle with endocervical carcinoma in situ and AGUS cells in uterus

Thank you so much for replying. My doctor is also stressing that she could do 10 biopsies, all normal but that’s no guarantee. I have called the office to go ahead and move forward with the hysterectomy. I just don’t feel like waiting for something to show up is a risk I am willing to take.

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