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Hopefull_2 08-25-2006 07:06 PM

For ktbee and others with adenocarcinoma in situ
I saw my oncologist today finaly after a 1 1/2 week wait that was agony. He was really nice and spent 45 mintues talking to me and answering all my questions. With my condition I have adnocarcinoma in situ, and he will peform a cone in 2 weeks and 4 days on the 12th of next month. He told me that this is not a diagnosis of cancer. Apparently by definition adenocarcinoma in situ effects only the cells above the basement membrane (or lamina propria). This means that its not invasive. Once it becomes invasive and spreads out through the basement membrane it is then called cancer and is invasive. From the cone they will determine the depth that it has spread. He used a digital microscope hooked up to a video screen to view my cervix which was coated with vinegar. The images were so clear and he could tell exactly how large of an area was affected. It turns out its is only a small area around the center of my cervical canal, maybe the size of a nickel or a little bigger. The remainder of the cervix a large area is pink and healthy. this is good news!:) I only hope the cone comes back with clear edges.
He was then able to show me the pictures of my cervix and it didn't look to bad. this gave me relief. He is going to take a small cone since the area if fairly small. I asked about imaging for the rest of my pelvis and chest but I was told unless he gets a diagnosis of cancer or suspects that it may be invasive he is unable to bill insurance for that. So this may be why some of us have not had imaging done in other areas since we weren't diagnosed with Cancer instead we were diagnosed with carcinoma in situ.

Anyway I hope my story will help some of you who like me weren't as clear about our diagnosis as we would like to be. Good luck Katie on Monday, I'll say a prayer for you. And good luck to all the rest of you!:angel: Sarah

sharon7270 08-25-2006 11:14 PM

Re: For ktbee and others with adenocarcinoma in situ
I did have all of the imaging...and they said it all looked "good". Stop is all so early that you will be fine

Hopefull_2 08-26-2006 05:42 AM

Re: For ktbee and others with adenocarcinoma in situ
Thanks Sharon - I feel much better today. Its the first day that I haven't felt completely anxious. I know I'm going to be ok now, its just hard to convince my subconcious of that!

Backinthesaddle 09-06-2006 07:32 PM

Re: For ktbee and others with adenocarcinoma in situ
I was diagnosed with CIN111 and AIS August 2005. I had two OB oncologists as well as my OB and my fertility doctor all tell me how dangerous AIS was and not to mess around with it. Once I started doing research I got even more afraid and was certain I could have the disease. I never thought that Cancer would enter my life having a cancer free family and I am 43 and nothing was tought about HPV and having perfect paps fofr 24 years I was in shock. Needless to say I had a modified radical hysterectomy in March (after a cone and several Ecc's). Clear margins in itself is not a safe zone. I had clear margins but very narrowly clear. I could not endanger my life to wait I was a new mom and am so thankful this was found post pregnancy.

Point I guess is that (forgive me for barging in) worrying is a way of life now that we all have internet access and we learn about what is, what might be and what may happen later and there is no way for us to stop worrying and being afraid. Knowledge is a great thing but it is also a gateway to stress.

Good luck to you hopefull and may everything turn out just fine...

tealdreams 09-08-2006 08:34 AM

Re: For ktbee and others with adenocarcinoma in situ

Yes, worry and stress are natural human emotions, but who wants to spend their whole life afraid and anxious? We all have the chose of weather we will let our disease run our life, or weather we will live a full life, but happen to have a disease.

Knowledge is power. Itís up to you to decide how you will react to having that power. For me, I feel a lot stronger now knowing that I have cancer than when I was waiting to find out my results. Now that I know, I can do everything in my power to make sure I have a full and healthy recovery. Worry makes you body sick and weak. Self-assurance makes your body strong and healthy.

ktbee 09-08-2006 11:39 AM

Re: For ktbee and others with adenocarcinoma in situ
Hi ladies,

I just wanted to add my take on stress and worry (and I agree with all of you). I know I've said this before, but one of my biggest challenges through all of this health stuff has been the waiting and uncertainty...and try as I may, it's been difficult for me to NOT stress about it. I'm generally a very positive (often obnoxiously optimistic) individual. My friends tease me for immediately seeing the bright side in even the most seemingly worst situations. Thankfully, I've been able to flip my perspective in a positive way when I've been faced with difficult situations in my life...but sometimes, it's a process to get there.

The stress and anxiety I feel stems from lack of control, I think. In past difficult situations, at least I always had a certian level of control. I didn't feel that way at first when my cervical issues began. My health has always been great up until now. I feel like I'm in a foreign place and I don't know how to deal with it.

So, I've decided to sieze control in whatever way I can. I'm turning the energy I've fed my stress into energy to educate myself...and I feel really strong right now.

Though this is already on the long side, I wanted to add that I met with a new doctor last week and she told me that if my ECC comes back negative for more AIS, she feels comfortable with me not having a hysterectomy right away (I will definitely be getting a hysterectomy at some point, and I think I'm coming to terms with that). I will have to have frequent and vigorous ECC's, and I'll have to get used to a life of waiting for results every few months that could change my life. This is my new reality. I can get used to this, but I'm going to have to find a way to keep my stress and anxiety at bay. If this will maybe buy me some time to have a baby, though, it's all worth it to me.

We all DO have control on how all of this effects our lives. Though I truly feel that it is important to stay positive, I think it's equally important to acknowledge your fear (at least for a moment) and see this as a very serious matter. Surely, we can all pull something positive out of this. For me, I've come to clearly see how much my family and friends care for me, and me for them. I feel more fortunate to have them in my life than ever. I've also reflected a lot, and I've thought about what's most important to me in life and what I want to get out of this life.

Thanks for reading, and good luck to you all!!


Backinthesaddle 09-08-2006 02:08 PM

Re: For ktbee and others with adenocarcinoma in situ
Tealdreams I think it is great that you are able to overcome stress with this. I wish I was better equiped when I first was told. I did learn that over tim you do have to chose how to feel. I chose life and I chose to feel so grateful for everyday I wake up. My complete outlook has changed because of the Cancer scare. I now am just thrilled to have another day. You are correct that stress is bad on the body.

Katie you are so right that we all learn something from the struggles we face. It makes us stronger and more capable to withstand future struggles. There really is no option. I just know how much I stressed and was so scared and felt so alone when I did all the research. I depended on my doctors to direct me. But at least I was knowledgeable when they did.

I do hope you do have that baby you want before you have your hysterectomy. I have met online many women who did just that.

karen32 09-08-2006 04:23 PM

Re: For ktbee and others with adenocarcinoma in situ
Backinthesaddle, I had a super hard time with the stress and worry when I first found out they had found cancer. It took me a long time to work through that, if anyone reads my first posts here, they would see I am a much different person now than I was then. I don't think there is any shame to be had for feeling worried or scared. NO SHAME. Finding the way to work through the worry, learning to be proactive about your health, learning that you can and should ask questions, learning that it is OKAY to feel bad, but also okay to say I'm not going to let it run my life - that is a powerful feeling that comes from within and gives us the strength to tackle any future worries head on, because we know we've done it before. Some of us take longer to learn how to work through it, but we all eventually get there with patience, encouragement and support. It took me a year and a bit to finally get to the place that I wanted to be so that I felt like I was in control and confident with where things were going.

Katie, you were so eloquent with your post, I think you really said it all :)

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