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Cancer: Cervical & Ovarian Message Board


Cancer: Cervical & Ovarian Board Index


I'm glad you've called for the appointment. I felt SO much better after talking to the gyn/onc. That was the first time I felt pretty confident that the cancer was only a spot or two, that the hyst would be my only needed treatment, and that I had a treatment plan.

During the diagnosis I knew that a pap was a screening tool, that the colpo could be diagnostic and/or treatment. I knew the ECC was diagnostic and the CKC was treatment and/or diagnostic. Even though I knew all of that I still was frustrated and afraid that each appointment would bring worse news that the previous one. I knew that my cancer wasn't progressing at the same speed as my doctors' appointments/tests/biopsy results. I knew that it was just that each step (appointment/test/etc) (up until the CKC and definitely the hyst) just revealed more information about my cervix. It was still really difficult continually hearing one more piece of bad news.

It REALLY helped to get copies of pathology reports and learn all I could about upcoming procedures and possibilities. It helped me realize that I probably had cancer before I actually had that diagnosis. The doctor telling me was somewhat anti-climatic.

Going to the gyn/onc was reassuring, like I said. That was the first place where it seemed there was an end in sight and that there was a clear cut "this will take care of that" type of conversation. She gave me several treatment options and I had a choice. Up to that point, I had no choice. I just had to do the next step. That helped me feel empowered. That was something I hadn't felt in months.

Francegirl, I know what you mean about the gyn/onc's office saying "only" or "just" AIS. The gyn's office seemed in a panic over it, the gyn/onc said "I see this several times per day". I later learned that ob/gyn's don't see AIS very often and they are not informed on all treatment options. With the current screening tools (this prep paps and HPV/dna tests) AIS is found earlier than it use to be. It use to be (and I'm talking maybe 10 years or so) an AIS diagnosis found by a gyn usually indicated cancer which was further along. The screening tools are helping identify earlier stages of glandular dysplasia and it is easier treated without having to go for chemo and/or radiation. The gyn's aren't up to date on the treatments for AIS, so they just know it is "scary". :shrug:

All of that is one reason why I strongly recommend women with AIS to get to a gyn/onc if the doctor will take them. Ob/gyn's are very knowledgeable of the fertility issue, helping women be more fertile (or less - with hormones), monitoring pregnant women, delivering babies, and taking care of a variety of easily treated vaginal issues. They are pretty informed on CIS, but give them AIS and it sends them into a tailspin. That's fine by me! Give me a doctor who handles AIS and AdCA regularly. I don't need someone to deliver a baby or prescribe something for a yeast infection. I needed someone who dealt with AIS/AdCA daily. My gyn/onc was that person for me.

[QUOTE=francegirl;4187312]
PICKLE EYES I think it's interesting that your gyn did the CKC. And I've seen others on this board too who did it that way. I wonder if it's a regional difference? Because mine didn't even offer to do it, or suggest that she should. Or maybe it's CYA on her part? She was all "you need to see a gyn/onc now". Hmm.[/QUOTE]

My gyn did the CKC because I *think* it wasn't clearly AIS on the pathology report. Or, because there was something else (the "atypical glandular epithelial lesions") she might have thought the CKC would be treatment and diagnosis. I don't know. Anyway, as soon as the pathology report for the CKC said AdCA she said "You'll need a hyst" and offered to do it, but also said she'd passed my slides and files on to a gyn/onc for verification that the total hyst was all I'd need.

I had a choice of having the gyn or the gyn/onc doing the hyst. I went with the gyn/onc because "just in case." And, I wanted to expert in cancer, not babies, removing my uterus.

[QUOTE=cksun;4187013]Thanks for your story...and a BIG sigh of relief and smile for you being released. It gives everyone else hope:-)

More questions if you don't mind? Should I be worried that the results of my cone could be much a more serious stage than my colposcopy? In other words, what are the odds of me being diagnosed with stage III? Also, does the colposcopy give a diagnosis for only the lesion that is seen or tested? [/quote]
Stage III? Precancer? AIS is "higher" than stage III dysplasia. The colpo simply looks at the outer cervix. If the doctor took a biopsy (pinch or punch biopsy), then that is separate from "just" a colpo. In addition to the colpo and/or biopsy of the outer cervix, the doctor can also do an ECC. The ECC scrapes the cervical canal.

I had a colpo, but no biopsy. So, with a history of 25 years of good paps, a positive hrHPV test, and a good outer cervix, my gyn decided to do the ECC. The ECC diagnosed the AIS. I don't know for certain, but I don't think the ECC is used (or can - not sure) to diagnose cancer. I think of the ECC as "a pap for the canal". A pap can't diagnose cancer and I don't think an ECC can either. So, the CKC might come back with more information (like it did for me) and say there is cancer OR it might say, it is just AIS. It will depend on how deep the lesion is. So, it is possible the CKC will give more bad news. It is also possible that is the stopping place - at least until you are finished having a family.

I know there are women who want to keep their uterus, with AIS, even though they are finished having a family. I was that way (only I hadn't had children and wasn't about to start at 44!). I had some strange attachment to my uterus and how it helped mark each month. When it came down to it, those skip lesions, the fact that I wasn't going to have children, and my age were reasons enough for me to change my mind and tell the doctor "give me the hyst." I think the hyst is the surest way to make sure a woman doesn't have to go through years of follow up appointments/tests, considering the characteristics and nature of AIS. I'm so glad I had my hyst and don't have to worry about follow up appointments, the waiting for results, etc.

[quote]How did you stay strong and positive? You sound like a trooper...I need help in that area. I suffer from anxiety and this diagnosis has definitely kicked it into high gear. I can't seem to stop my mind from going to that place. Can I die from this? I know, it sounds like I am asking you to look through a magic crystal ball but as lons as you have been on this board, have you experienced any woman not making it through this?

Thanks and I apologize for all of the questions....[/QUOTE]
Don't worry about all of the questions. I'm glad to answer anything I can. Honestly, this board and another hyster board were my only places to really talk about my cancer, my fears, etc. No one else seemed to understand.

How did I make it through? Honestly? Hope and prayers. Toss this discussion board and doing internet searches (but restricting it to reliable sources - there are some disturbing sites out there) into the mix and that is how I made it. I'm also a teacher. I actually learn by teaching. I'd do research, come here, discuss it, and it would all start making sense to me. It also helped me to reach out and help those who joined after me, but had the same worries. I also kept in mind those women who might come along after I stopped posting here and wanted to offer as much hope and help to them as I possibly could. So, I posted.

Let's talk about the hope and prayers. I've been on a long journey of figuring out my beliefs. Being diagnosed with cancer and going through the follow up phase has actually made me an even stronger believer in hope and prayers. There's a lot more to that, and I'll share it if you wish, but not in this post . . . I'm already talking a lot! ;)

Don't be fooled, I had some really bad days and moments. I felt very sorry for myself and was worried that I'd die, etc. I had to keep telling myself that if I stuck my foot out to take a step there WOULD be ground underneath me. I might not see it, but I trusted it was there. It might be uneven ground, but there was ground. Again, my faith and hope took me a long way. Some days I just had to tell myself "this too shall pass" a half-million times before I was distracted enough from my worries/panic to go on to my next daily task (or class period - if I was at school).

I'm sorry I wrote a novel. I hope I've said something that helps you realize there is ground beneath your step. And that there are women out there in the world who have been through what you've been through - and care about you, even though we don't really know each other! ((((((hugs))))))
[QUOTE=Pickle Eyes;4187550]I'm glad you've called for the appointment. I felt SO much better after talking to the gyn/onc. That was the first time I felt pretty confident that the cancer was only a spot or two, that the hyst would be my only needed treatment, and that I had a treatment plan.

During the diagnosis I knew that a pap was a screening tool, that the colpo could be diagnostic and/or treatment. I knew the ECC was diagnostic and the CKC was treatment and/or diagnostic. Even though I knew all of that I still was frustrated and afraid that each appointment would bring worse news that the previous one. I knew that my cancer wasn't progressing at the same speed as my doctors' appointments/tests/biopsy results. I knew that it was just that each step (appointment/test/etc) (up until the CKC and definitely the hyst) just revealed more information about my cervix. It was still really difficult continually hearing one more piece of bad news.

It REALLY helped to get copies of pathology reports and learn all I could about upcoming procedures and possibilities. It helped me realize that I probably had cancer before I actually had that diagnosis. The doctor telling me was somewhat anti-climatic.

Going to the gyn/onc was reassuring, like I said. That was the first place where it seemed there was an end in sight and that there was a clear cut "this will take care of that" type of conversation. She gave me several treatment options and I had a choice. Up to that point, I had no choice. I just had to do the next step. That helped me feel empowered. That was something I hadn't felt in months.

Francegirl, I know what you mean about the gyn/onc's office saying "only" or "just" AIS. The gyn's office seemed in a panic over it, the gyn/onc said "I see this several times per day". I later learned that ob/gyn's don't see AIS very often and they are not informed on all treatment options. With the current screening tools (this prep paps and HPV/dna tests) AIS is found earlier than it use to be. It use to be (and I'm talking maybe 10 years or so) an AIS diagnosis found by a gyn usually indicated cancer which was further along. The screening tools are helping identify earlier stages of glandular dysplasia and it is easier treated without having to go for chemo and/or radiation. The gyn's aren't up to date on the treatments for AIS, so they just know it is "scary". :shrug:

All of that is one reason why I strongly recommend women with AIS to get to a gyn/onc if the doctor will take them. Ob/gyn's are very knowledgeable of the fertility issue, helping women be more fertile (or less - with hormones), monitoring pregnant women, delivering babies, and taking care of a variety of easily treated vaginal issues. They are pretty informed on CIS, but give them AIS and it sends them into a tailspin. That's fine by me! Give me a doctor who handles AIS and AdCA regularly. I don't need someone to deliver a baby or prescribe something for a yeast infection. I needed someone who dealt with AIS/AdCA daily. My gyn/onc was that person for me.



My gyn did the CKC because I *think* it wasn't clearly AIS on the pathology report. Or, because there was something else (the "atypical glandular epithelial lesions") she might have thought the CKC would be treatment and diagnosis. I don't know. Anyway, as soon as the pathology report for the CKC said AdCA she said "You'll need a hyst" and offered to do it, but also said she'd passed my slides and files on to a gyn/onc for verification that the total hyst was all I'd need.

I had a choice of having the gyn or the gyn/onc doing the hyst. I went with the gyn/onc because "just in case." And, I wanted to expert in cancer, not babies, removing my uterus.


Stage III? Precancer? AIS is "higher" than stage III dysplasia. The colpo simply looks at the outer cervix. If the doctor took a biopsy (pinch or punch biopsy), then that is separate from "just" a colpo. In addition to the colpo and/or biopsy of the outer cervix, the doctor can also do an ECC. The ECC scrapes the cervical canal.

I had a colpo, but no biopsy. So, with a history of 25 years of good paps, a positive hrHPV test, and a good outer cervix, my gyn decided to do the ECC. The ECC diagnosed the AIS. I don't know for certain, but I don't think the ECC is used (or can - not sure) to diagnose cancer. I think of the ECC as "a pap for the canal". A pap can't diagnose cancer and I don't think an ECC can either. So, the CKC might come back with more information (like it did for me) and say there is cancer OR it might say, it is just AIS. It will depend on how deep the lesion is. So, it is possible the CKC will give more bad news. It is also possible that is the stopping place - at least until you are finished having a family.

I know there are women who want to keep their uterus, with AIS, even though they are finished having a family. I was that way (only I hadn't had children and wasn't about to start at 44!). I had some strange attachment to my uterus and how it helped mark each month. When it came down to it, those skip lesions, the fact that I wasn't going to have children, and my age were reasons enough for me to change my mind and tell the doctor "give me the hyst." I think the hyst is the surest way to make sure a woman doesn't have to go through years of follow up appointments/tests, considering the characteristics and nature of AIS. I'm so glad I had my hyst and don't have to worry about follow up appointments, the waiting for results, etc.


Don't worry about all of the questions. I'm glad to answer anything I can. Honestly, this board and another hyster board were my only places to really talk about my cancer, my fears, etc. No one else seemed to understand.

How did I make it through? Honestly? Hope and prayers. Toss this discussion board and doing internet searches (but restricting it to reliable sources - there are some disturbing sites out there) into the mix and that is how I made it. I'm also a teacher. I actually learn by teaching. I'd do research, come here, discuss it, and it would all start making sense to me. It also helped me to reach out and help those who joined after me, but had the same worries. I also kept in mind those women who might come along after I stopped posting here and wanted to offer as much hope and help to them as I possibly could. So, I posted.

Let's talk about the hope and prayers. I've been on a long journey of figuring out my beliefs. Being diagnosed with cancer and going through the follow up phase has actually made me an even stronger believer in hope and prayers. There's a lot more to that, and I'll share it if you wish, but not in this post . . . I'm already talking a lot! ;)

Don't be fooled, I had some really bad days and moments. I felt very sorry for myself and was worried that I'd die, etc. I had to keep telling myself that if I stuck my foot out to take a step there WOULD be ground underneath me. I might not see it, but I trusted it was there. It might be uneven ground, but there was ground. Again, my faith and hope took me a long way. Some days I just had to tell myself "this too shall pass" a half-million times before I was distracted enough from my worries/panic to go on to my next daily task (or class period - if I was at school).

I'm sorry I wrote a novel. I hope I've said something that helps you realize there is ground beneath your step. And that there are women out there in the world who have been through what you've been through - and care about you, even though we don't really know each other! ((((((hugs))))))[/QUOTE]

Hugs back at you!! Thanks so much for all of the information and also, the kind words.

Clearly, I am confused about staging at this point. I took your advice and got copies of my pathology reports. If you don't mind, I will share them with you and any feedback you have would be great. All of this medical jargon can get confusing and although, I have done research on the internet, that can be confusing along with very alarming!

ECC Results- Benign endocervical and squamous epithelium. No evidence of dysplasia.

Biopsy 12'o'clock (colpo)- Endocervical adenocarcinoma in situ. No evidence of squamous dysplasia. Endocervical transformation zone identified.

Based on your response, I will assume the CKC could give a much different diagnosis. That is what scares me...it could be much worse. I hope the gyn/onc will better explain what all of this means, etc. You are correct, leave the gyn to the babies and not CANCER!

I would love to hear about the rest of your journey and again, thanks. I have not told anyone about this other than a few people, so this board means a lot to me.





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