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National Cervical Cancer Coalition


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 Post subject:
PostPosted: Fri Feb 06, 2009 9:09 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Please do check in when you have a chance, Daphne. We're thinking about you and will eagerly await hearing from you.

You'll do fine! :)

Fredo

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 Post subject:
PostPosted: Sun Feb 08, 2009 5:21 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Hey all,

The LEEP went fine. It was completely painless -- I didn't even feel the anesthetic being administered. However, the anesthetic did give me a huge adrenaline rush; it felt like my heart was beating out of my chest. My doctor did not warn me about that part but I had read about it so I wasn't too alarmed when it happened. The procedure itself probably only took five minutes. Afterwards, there was really no pain, just a faint feeling that something had been done down there. By the next day, I couldn't tell that anything had happened.

So, now I wait to see if the results will show that they possibly got it all (clear margins), or that they didn't. The one thing I'm really worried about is the cervical canal. I asked my doctor right before the surgery if the lab tests had shown any dysplasia in the cervical canal. He got this blank look on his face -- he didn't know! So, he checked my charts again and they showed that there was a possibility that it was there. I have a feeling that's not good news. I also am extremely frustrated that my doctor was about to the procedure and hadn't checked into that! So, anyway, he ended up taking tissue from the canal in hopes that that gets it all if there was indeed dysplasia there.

Feel free to ask me any questions you might have about the LEEP and I'll try to answer them for you if I can.


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 Post subject:
PostPosted: Mon Feb 09, 2009 1:14 am 

Joined: Sat Jan 19, 2008 6:16 pm
Posts: 370
Hey Daphne,

I'm glad the LEEP was painless, I just wanted to thank you for sharing your experience with everyone. I'm sure that there are some women out there that will take comfort in knowing that they aren't alone. I truly hope that this procedure will be the end of this ordeal for you and that you can get back to living your life.


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 Post subject:
PostPosted: Mon Feb 09, 2009 9:53 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
What a great and informative post. Thank you, Daphne, and I too am glad the LEEP was not difficult for you. Many women who come to this forum in the future will benefit from your insights, and I very much appreciate you for posting.

I am also awarding you the first ever ASHA blue-ribbon for being a savvy and smart patient. You actually initiated a conversation with your doctor about sampling the endocervical canal??!! :D

BRILLIANT!

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 Post subject:
PostPosted: Sun Feb 15, 2009 5:21 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Daphne,

Thanks so much for letting us know how it went! I am so happy to hear that it wasn't as bad as it sounds. I really really hope that they got everything and that you won't have to deal with this again!!!! Yay for you!

OFG


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 Post subject:
PostPosted: Mon Feb 16, 2009 4:12 pm 

Joined: Fri Feb 06, 2009 5:33 pm
Posts: 8
I was diagnosed 5 yrs ago during a yrly pap....i had to have a biopsy....biopsy came back less severe...2 yrs later had another...repeat biopsy....last year it happened all over again....Ive had the same obgyn for 10 yrs.....dr told me not to stress out....most precancer cells go away on thier own....I continue doing my yrly checkups.....cancer runs in my family...my mom is a cancer survivor......the most important thing is that u trust ur doc...dont freak out.....relax


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 Post subject:
PostPosted: Wed Feb 18, 2009 8:14 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Hi All,

Sorry I've been gone so long. My home computer has a virus right now and I can't connect to the internet, so I'm borrowing a friend's PC right now.

Fredo -- thank you for the award! I will wear it proudly. ;)

To give you an update, things are so-so right now. I got a call six days after the LEEP where the nurse told me that they got all of the dysplasia (the margins were clear) and that there was nothing in the canal. Well, I happened to go back to the doctor Monday because it seemed that I had a slight infection -- I did, but nothing antibiotics can't fix. Anyway, the doctor comes strolling into the room and announces that it sure was a good thing that he took a swipe of the cervical canal because there was CIN III there! How the nurse mis-read that, I don't know, because it was clear as day on the copy of the report he handed me. Anyway, the thing that worries me is that the severe cells were of the glandular type. My doctor is saying to just come back in three months, however, his office has screwed up a few too many times for my taste and I'm not comfortable there anymore. A friend of a friend recommended an oncologist GYN who I am in the process of getting an appointment with right now. I just want a second opinion as to how to proceed. On one hand, I'm positive because the margins were clear, on the other, I'm worried about the severe glandular cells in the canal. I will keep you all updated and hopefully have a functioning computer soon.

Thanks for all your support.


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 Post subject:
PostPosted: Thu Feb 19, 2009 11:42 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Daphne,

Wow, I'm sorry to hear about that. Can you tell me more about glandular cell changes? What does that mean? It is sooooo scary about how the pap, colpo/biopsy and LEEP results can all come back saying different things.

I think you are smart to get a second opinion. Funny, when I called my dr office for the results of my biopsy last year, the nurse on the phone said "oh, it came back negative" and I replied "well, what does that mean?" and she replied "Just come back for another pap in a year". My dr called me back shortly thereafter and said that the nurse should have "never told me what my results were" and that I actually had CIN I and would need to come back in 6 mos, not a year.

It's scary how often mistakes are made. That is why I think one of the most important lessons this whole ordeal has taught me is that I HAVE to be my own advocate. In a way, you need to mircromanage your own health care. It's a good lesson to learn while dealing with something like this that is not life threatening so that in the future, when faced with something more serious, you already know how to stick up for yourself.


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 Post subject:
PostPosted: Fri Feb 20, 2009 11:24 am 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
From what I understand, the glandular cells are higher up in the cervix and aren't always detected on a pap (maybe why my paps and LEEP were so different). I guess they are trickier in that they grow faster, kinda jump around in terms of where lesions grow, and are probably harder to find. I'm freaked out because CIN III in the glandular cells probably means that I wasn't far from Adenocarcinoma in Situ AND I'm really worried that my doctor didn't get it all -- that's why I want a second opinion.

Yeah, I've had bad experiences in the past with doctors and know how hard it is to find good care -- especially finding both a good doctor AND nurses all in the same practice. I went through the same crap when I had knee problems a few years ago. Are you still going to this same doctor where the confusion happened? I guess you can always request copies of your reports to make sure no miscommunication errors have occurred.

Funny you should say this is something that's not life-threatening, because this has been scaring the crap out of me all week. I've gotten sick because I'm so stressed out. I can't believe this was CIN III already and almost went unchecked -- it could have been cancer in no time. Anyway, I'm trying to come to terms with the situation and just get all my bases covered ASAP. I'm pretty much telling myself at this point that it's okay if I can't have my own biological children -- it's not the end of the world. And, I have an appointment this afternoon with my family doctor to hopefully get a referral to the oncologist. I'll let you know how it goes.


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 Post subject:
PostPosted: Tue Feb 24, 2009 10:29 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Yeah, I changed doctors after all of that. I didn't like anything about that place. I should have taken it as a clue when I was sitting in the waiting room for my colpo and some other poor woman ran out of the office crying.

Please try not to worry so much, I know that is hard to do. I'm not sure how old you are, but I know that cervical cancer usually doesn't develop until around age 40's-50's and that it progresses very slowly. Even with CIN III, you wern't guaranteed to get cancer. Cervical cancer almost always is the result of a woman not getting any medical attention for many years - and you are doing just the opposite of that, right?

I think you are definitely doing the right thing in getting a second opinion. Please let us all know how that goes!!!


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 Post subject:
PostPosted: Sat Mar 07, 2009 1:58 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
Sorry it's been so long since I posted an update! Things have been nuts!

Well, I visited two gyn/oncologists this week. The first said that he would prefer to do a cold knife cone on me to make sure no more severe changes were missed. He also said I have the option of waiting and just being monitored every three months with a pap, colpo, ECC, and HPV test. However, he also said that if I ever want kids, I should do it relatively soon before the HPV attacks again -- I did NOT want to hear that.

The second doctor recommends nothing at this time, although they upped my diagnosis to Adenocarcinoma in Situ, meaning that there's chance more lesions are hiding in my cervical canal. He doesn't even want to see me for another six months because he said it wasn't "cost-effective," which makes me think he's catering more toward the insurance companies and less to his patients' health. Anyway, this doctor pretty much blew off my diagnosis and told me to relax and that things would be fine.

I honestly don't know where I'd go for a third opinion, so for the time being, I think I'm going to take a middle-of-the-road approach here. I really don't want more surgery at this time, but think I will return in two months for another exam. I can only hope that the LEEP I had will help me to clear this once and for all.


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 Post subject:
PostPosted: Sat Mar 07, 2009 8:26 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Daphne,

Wow, that is some really hard news. I hope you are doing ok. You sound like you are a strong person.

Something that I found online that you might find helpful is the American Journal of Obstetrics & Gynecology guidelines for management of CIN. I found it quite informative because it basically gives you an outline of what options your gyno(s) should be giving you based on whatever your degree of dysplasia, including preferred follow up timelines. Here's the link: http://download.journals.elsevierhealth ... 009337.pdf

Scroll down to page 343 which is where the section on AIS begins. I just read it and it sounds very rare. I hope it is not what you truely have and that the doctor(s) are mistaken.

I just found out recently that a close friend is HPV+ and has dysplasia. She has other problems down there and is done having kids so she is scheduled for a complete hysterectomy on Monday. I really hope it doesn't come to that point for you or me! It's really scary though......


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 Post subject:
PostPosted: Sat Mar 07, 2009 11:22 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
When these problems first started for me in November, I never thought it would ever get to the point that it was this bad!!! I never in a million years thought my case would end up being severe, let alone this rarer Adenocarcinoma in Situ thing!!!! However, I have read that it isn't as rare as it used to be (I think the article you linked says the same thing). The scariest thing about it is that a regular pap doesn't catch it. I'm thankful that I did have some squamous dysplasia just to alert the doctors that something was wrong!

Anyway, thanks for the link. It does say that monitoring every six months is recommended, however, I'd still feel a lot better with every three months, so I'm still trying for that. Also, it says this: "A number of studies have now clearly demonstrated that an excisional procedure is curative in the majority these patients." I'm just hanging on the fact now that my LEEP showed clear margins for the AIS and that hopefully it got it all.

I know my doctor's nurse said that after I have kids they'd want to do a hysterectomy. I'm banking on the fact that they come up with some therapeutic vaccines before then!!!

When is your next colpo scheduled? I hope your preparation for that is going well!


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 Post subject:
PostPosted: Thu Mar 12, 2009 9:46 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Is HPV still the culprit behind the AIS or is that more of a genetic problem and the atypical squamous cells were from the HPV? Just wondering since it seems scary that the virus could effect the cervix in so many different ways. I totally agree with you - it is entirely too frustrating that the pap wouldn't pick up your condition. Sometimes pap smears seem pointless.

Well, I went in for my colpo this morning. Still a little sore at the moment but this one wasn't nearly as bad as my first one last May. I focused really hard on deep breathing and had a pretty good anti-anxiety pill that I took beforehand.

She took two biopsies and checked inside the cervix as well. She said that a few places look like mild dysplasia while a few others looked like they could be moderate-severe. She also said that it looked like some of the dysplasia was creeping up into my cervix. So, hopefully we will have caught it before it gets all the way up there and I can get cryro or LEEP done.

I'm not as scared of the LEEP now after I got through today as the dr mentioned that women find the LEEP no more uncomfortable than the biopsies - did you find that to be true?

Please continue to keep us updated on your situation. I don't think any of us thought that you would be in the situation you are in right now, but I agree with you - at least it was caught early! And I have faith that things will turn out ok for you.


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 Post subject: Drastic Measures?
PostPosted: Sun Mar 15, 2009 7:35 pm 

Joined: Sun Mar 15, 2009 7:28 pm
Posts: 4
Does anyone know how long/much it takes for the ob/gyn to consider more "drastic measures?" I had a LEEP 7 months ago (for CINII) and just had cryotherapy done 2 weeks ago (CINI; the abnormal cells grew back within three months of the LEEP. I had LEEP done, then had TWO abnormal PAP smears following it). If I have another abnormal PAP smear in three months, does anyone know the chances of having something more permanent done? For the record, I informed the doctor that I would have no problem having a hysterectomy or something similar, as I have endometriosis and will most likely get a hysterectomy sometime down the line, as my mother did. But, most doctors don't like the notion of taking out a 22 year old's uterus/cervix <br>
Also, has anyone else had both procedures done? Cryo is supposed to be "better," but I much prefer LEEP. It's been 2 weeks and I'm still fatigued and the discharge is a bit of a nuisance. I still have cramping as well. I even took a pregnancy test just to see if there was another reason for these symptoms (and I haven't been intimate in 3 months, as my fiancee is in Florida for the Navy).

Sorry for all of this rambling - I can't quite find all of the answers I need on Google!


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