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Old 04-12-2008, 09:49 AM   #1
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Got results yesterday - Adenocarcinoma 1a1 and have question

Quick review of history, in January I was HPV positive with a clear pap. March, I had a clear colposcopy, but ECC (endocervical curettage) came back with atypical glandular epithelial lesions and adenocarcinoma IN SITU. The first week of April I had a cone biopsy, another ECC, a D&C, and an endometrial biopsy.

My doctor (a gyn) said the results would be back in 3-4 days. I called yesterday, and after a bit of telephone tag she said the endometrial and endocervical curettages were clear, but the cone biopsy had a 1mm x 1.6 mm (don't know how deep, I think less than 3mm) lesion. My margins were clear, but barely. She is recommending a simple hysterectomy.

She has also sent my slides and path reports to a gyn/onc for review. She said I don't need to go to see a gyn/onc for the hysterectomy because it is a simple hysterectomy. She said she can do it. She also said there was no lymph involvement (how does she know that?). I go back to her on Friday (6 days from now) for follow up appointment from the cone. I'll have PLENTY of questions for her at that point.

I am upset, but this is actually what I "felt" the diagnosis would be ever since my mid-March diagnosis of AGC and AIS.

My question is, I want a second opinion. Is the doctor's sending the information to a gyn/onc considered a 2nd opinion, without me every going to him/her? I want to SEE another doctor and talk with him/her.

This seems to have happened so fast.

What do I need to be looking up now? types of hysterectomies (abdominal vs. vaginal), tests prior to hyst., recovery from hyst., what else?

 
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Old 04-12-2008, 10:29 AM   #2
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Hello Pickle Eyes,

While I don't have any real concrete experience to offer you, I would call my insurance company, explain the situation and ask them if you are entitled to a 2nd opinion independent of what your own gyn is doing by consulting an gyn/onc.

Based upon their recommendation, perhaps someone in your neighborhood can recommend someone another doctor you can talk to? I know it's probably hard to share this with neighbors, even if you know them well. A 2nd choice would be to just look thru your provider list and pick somebody if you have to.

I just wanted to write to you to let you know how sorry I was to hear about your results. I keep worrying that I will have to face a hysterectomy as well although this is all so complicated to me. I have also been thru that phone tag thing and it can be really nerve racking.

I went today for my followup pap and when the nurse took my bp it was 140/90. After the doc came in and did the pap, she said to come back in 3 months and that she is expecting the pap to be OK. Now how does she know that??? Anyway, it felt so good to hear that - I asked the nurse to take my bp again and it dropped to 120/80!

This problem is apt to cause other health issues if you don't keep your wits about you. But then that is why this board is here, to offer emotional support.

I hope you know you have that here.

Please keep posting and let us know how you make out.

Marie

 
Old 04-12-2008, 11:48 AM   #3
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Hi Pickle (((Hugs))) One would have thought that if you wanted to have a second opinion then surely you could. I have no knowledge of the American Health Care system however (I'm a legal English alien living in Canada), and the health care systems as you know are free. That said if you want to see another doctor and your Gynae is asking for a review of your films by an Onc/Gynae, can you not go along as well in person? I think I'd be asking for a second opinion as well to be honest, as it pays to be proactive.
O.K. I did a quick google on cervical cancer and staging. I'm possibly telling you what you already know, but here goes anyhow. Stage 1A1..the cancer is not more than 3 millimeters deep and not more than 7 millimeters wide. The treatment of stage 1A1 cancer it suggests options as; Total Hysterectomy with or without Bilateral Salpingo-Oophorectomy; Conization; Radical Hysterectomy and removal of lymph nodes; Internal Radiation Therapy.
This info was from the National Cancer Institute. Do a search on staging and treatment.
It seems you do have options and one would have thought you need the time to explore these options with an Onc/Gynae.
I know it's hard sometimes to think clearly with all the worry and all, but it does appear that you have several treatment options.
Take Care.

 
Old 04-12-2008, 12:14 PM   #4
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Wow...my partner's gyn doctor said the same thing re hysterectomy and she was
DEAD WRONG....by the time a gyn oncologist came to the OR the anestheseologist
said close her or lose her. Please...you need an oncologist...you live in Texas..go
to Anderson...please.....

 
Old 04-12-2008, 12:45 PM   #5
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Get a second and even third opinion, at least one of which should be from a gyn-onc. Since it wasn't completely in situ, a visit to a gyn-onc is not only prudent but the only right thing to do. Adenocarcinoma is a little more complicated in that there can be skip lesions. It's quite rare but it happens. As to excluding lymph node involvement, you need the appropriate testing. I would not be comfortable taking her word for it because, as you said, how does she know?

You will want to bring your path reports as well as your current gyn's recommendations with you.

I'm very sorry you are in the position you feared you would be, but you are strong and can follow this through.

 
Old 04-12-2008, 01:01 PM   #6
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Thank you Benson, Maple, and brieaukirsch!

Thank you for reassuring me about the 2nd and 3rd options. I will also call my insurance company to ask about what I need to do to get that/those. I'm going to also look into MD Anderson.

I am still stunned, not really shocked. Just stunned.

I've been reading even more today. Just like I've done every day for the past month. I start reading one page, think of another topic, open another window and search that. At one point, an hour ago or so, I think I had 20 windows opened! LOL

I've started a list of questions and I've started a list of websites to return to. This discussion board is TOP on my list (well, that and .gov etc)

Thank you ladies. It is good to be reminded that I am strong, that I am not facing this alone, and that there is great hope. Thank you all from the bottom of my heart!

 
Old 04-13-2008, 04:07 PM   #7
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

I'm so glad that other women have also pushed for you to get a second opinion.
I'm praying that your insurance is accepted at Anderson, but since you have to
check with your insurance co. it sounds like you have an HMO (our cancer center
takes GHI PPO, not HMO). But still, you absolutely need an oncologist. Do your
research, but take time to just live in the moment and divert your thoughts, if
possible. We do it with humor and my partner took up knitting and found it so
very relaxing...esp. in waiting rooms. Keep us posted. You are not alone....

 
Old 04-13-2008, 10:54 PM   #8
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Quote:
Originally Posted by maple3 View Post
Keep us posted. You are not alone....
Thank you maple! I'll ask about MDAnderson when I call tomorrow.

And you may not need to worry about me keeping you updated. You might end up wishing I shut up! (glancing over the most recent posts, most of them are by me :blushing: ) What can I say, I'm a talker and incredibly curious (nosey, as Dad always said). lol

 
Old 04-15-2008, 09:21 AM   #9
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

I also think you should definitely get a second opinion. I had carcinoma in situ (cancer which hasn't spread yet), and my gyn sent me immediately to a gyn/oncologist.

It's your health and no one else can be an advocate for you but you.

Big hugs,

Lisa

 
Old 04-15-2008, 09:16 PM   #10
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Re: Got results yesterday - Adenocarcinoma 1a1 and have question

Thanks Ladies! I'm scheduled to the the gyn/onco now instead of the regular gyn. I started a new thread about it (didn't think to bring the discussion to this thread - sorry moderators).

I was originally going to be going back to the gyn just as my post-cone check up. If I hadn't called her last Friday to get my pathology report, I wouldn't have a clue about her already consulting with the gyn/onco. And as it turns out, the gyn/onco I contacted is the one my gyn had sent my slides/reports to. So the nurse was a bit familiar with my case already!

And, the nurse said the onco was a bit of a "mother hen, she'll take good care of you." That helped ease some of my fears!

 
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