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National Cervical Cancer Coalition


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 Post subject: Dysplasia Clearance
PostPosted: Sun Jan 25, 2009 1:23 pm 

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

I had a second colposcopy done yesterday at a new doctor (my last colpo came back inconclusive). Anyway, as he was explaining to me that he had biopsied a few areas and that they would call me with results in a week, he said that there's a 50% chance that this will be benign -- the other outcome is that it will be dysplasia. I'm guessing that it will be dysplasia just because I know I have high-risk HPV.

He then went on to say that if it is mild dysplasia, I will have a 40% chance of clearing it on my own. What? Only 40%???? I thought the rate of clearance without any intervention for mild dysplasia was more like 80 or 90%??? I know I'm a bit older (33), but I thought my chances were better than this.

What have all of you heard/experienced with clearance rates?


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 Post subject:
PostPosted: Sun Jan 25, 2009 11:03 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
I am in the same boat as you are. I'm 32 and was diagnosed with mild dysplasia (CIN 1) after a biopsy in May. Right now, my doctor is taking the "wait and see approach" - the reason being that I am "likely" to clear the infection on my own.

I pulled up a statistic from 1999 (couldn't find newer info) that you might find helpful:

American Medical Association, 1999
Sixty to 80 percent of CIN 1 dysplasias typically resolve on their own, and only about 1 percent progress to invasive cervical cancer. On the other hand, less than one third of CIN 3 dysplasias disappear spontaneously, and about 12 percent eventually progress to cervical cancer.

Can I ask, what designation have your paps been coming back as?

I have an appointment with my doctor tomorrow to try and learn more about my situation. I plan on asking her agian what she thinks my chances are of clearing this on my own and I will let you know what she says..........


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 Post subject:
PostPosted: Sun Jan 25, 2009 11:37 pm 

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

That would be great if you could let me know what your doctor says tomorrow. Has she indicated in the past how long she might "wait and see" before taking action? My doctor sounded like he would wait about a year (if the biopsy indeed comes back as mild dysplasia) before performing a LEEP.

Here's my history: had a pap come back as LGIL in October. My family doctor them performed a biopsy and another pap in November. The biopsy came back inconclusive (the sample wasn't good enough) but the pap came back normal. I then switched to a GYN that said pap results can vary just because what one lab tech sees as abnormal might be normal to another (kinda scary). Anyway, I just had this second biopsy performed on Friday to try to get a clear answer as to what stage I'm at. The doctor is guessing it's mild just by what he saw during the colpo.

Good luck at the doctor tomorrow and thanks for the info! 60-80% sounds like pretty good chances to me. ;)


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 Post subject:
PostPosted: Sun Jan 25, 2009 11:49 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
I think my doctor prefers to monitor rather than treat unless totally necessary. From my past conversations with her, it sounds like she won't ever treat mild dysplasia, but I am going to confirm that with her tomorrow. I can't take much more of this and would really like to have treatment and hopefully move past this part of my life.

Anyway, I found some extremely helpful reading online if you are someone who needs as much info as possible. Do you ever wonder what the guidelines are for how different degrees of abnormal paps and colpolscopies are managed? Well, I finally found the official management guidelines online and they helped me understand what is ahead for me immensly. Here are the links:

http://download.journals.elsevierhealth ... 009301.pdf

http://download.journals.elsevierhealth ... 009337.pdf

Also, my dr prefers to treat dysplasia by cryrotherapy rather than a LEEP since it is less expensive, less invasive (painful), and yeilds the same effectiveness percentages as other treatment methods. Just an FYI.


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 Post subject:
PostPosted: Mon Jan 26, 2009 9:49 pm 

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

I hope you got clear answers from your doctor today and have a good idea now as to what next steps may be.

Thank you for the reading -- it pretty much confirms everything else I've seen. I must say though that the sections on the possibility of treatment causing premature labor in the future does scare me.

My family doctor preferred to treat with cryotherapy as well. However, my new gynecologist claims that it is out-dated and destroys too much tissue; he also said that he has been with women in labor who had to go to c-sections as their cervix was scarred shut from cryotherapy (not sure if this happened to him just once or a few times). Anyway, if it comes down to me needing a procedure, he prefers LEEP. As I haven't had kids yet, he says that he can perform a LEEP without taking too much of the cervix. I'm still worried about that, however -- I'm just really hoping that this clears up on its own.

Keep us posted on your doctor visit today. I hope everything went well!


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 Post subject:
PostPosted: Mon Jan 26, 2009 10:13 pm 

Joined: Mon Nov 03, 2008 9:23 pm
Posts: 37
OFG!!


Good luck tomorrow!!
I've been thinking about you!! (I sent the email request to fredo)
I hope you get all your questions answered. If not..keep asking until your satisfied!!
Please let us know what he says.


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 Post subject:
PostPosted: Mon Jan 26, 2009 10:26 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Hi Daphne,
Well, I just got back from my doctor appointment and asked her as many questions as I could think of. Here goes:

I asked her what chance I have of clearing the infection on my own taking into consideration my age (32) and the fact that I have had it for at least two years now. She replied that it is less of a chance, but could not tell me how much less. She did say that the data that says that up to 80% of mild dysplasia clear on their own is old information, but they do not have new information. She couldn't give me a very clear answer about how likely it is that I will clear it on my own.

Another question I asked is how long it takes for an HPV infection to spontaneously resolve itself. She said that she has seen HPV infections clear themselves in a matter of 6 months or less. But she has also seen HPV infections linger for years. In fact, she mentioned that it is not all that uncommon for mild dysplasia to hang around, coming and going, for a decade or more. She also said that those cases are worrisome since it is indicating that your body is never fully fighting off the virus and could have a greater chance of eventually turning into cancer.

I asked her if there was something wrong with my immune system in that I haven't been able to fight this off yet. She said not necessarily, but couldn't really give me much advice on how to improve my chances other than not to smoke, drink too much, eat lots of fruits and veggies and get lots of sleep. I already do all of these things though!!!

She also said that in her 25 years of practice, she has only seen one patient with cervical cancer. And she treats many of us, every day, with dysplasia issues.

For me, she strongly recommended another colposcopy asap as my last pap came back as ASC-H and she is worried that there is a high-grade lesion hanging out there undetected. She indicated that this pap was more worrisome than an LGSIL, which basically points to mild dysplasia, which doesn't worry her. It's the high-grade stuff they want to catch and treat right away.

Also, I did ask her about cryro vs leep and she prefers cryro for the same reason your dr prefers leep - she says that it is easier to carry a pregnancy after cryro rather than leep. She will only do a leep if she needs to biopsy the tissue that is removed during the procedure - otherwise, she goes with cryro. From what I've read, both procedures have about the same rate of success.

So, my next step is getting another colpo. Was the one you just had pretty painful? My last one was aweful and I'm so scared!


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 Post subject:
PostPosted: Mon Jan 26, 2009 10:27 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
LWG,
I will send my email request in as well! How are you doing? Do you know if the solution has worked yet?
OFG


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 Post subject:
PostPosted: Mon Jan 26, 2009 11:59 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
When work slows down for me, I'm going to do more searching for clearance rates online. I just want to see somewhere that it's better than the 40% rate my doctor gave me!

Well, at least two years is the typical time to clear the infection, so hopefully you might be turning a corner soon!

Do you take any supplements? It's great that you cover all the other bases on things to improve immunity. I pretty much do too (I stopped socially smoking as soon as I was diagnosed last Nov), however, I can't always get enough sleep or control stress levels from my job.

Wow, I'd really like to get to the bottom of this cryro vs. LEEP issue. Again, something I need to read more about when I have some time.

I'm sorry you're scared about the next colpo. My first one didn't hurt at all -- the speculum was really uncomfortable, but I couldn't feel the biopsy. This second one was even better -- plus, it was done in about five minutes and I didn't spend 15 minutes waiting for the doctor to focus the colpo lens. I could definitely tell this time though that they took more with this biopsy -- I've been having some discharge the last couple of days, but nothing too bad at all. Did they tell you to take ibuprofen or any other pain reliever beforehand? I forgot to do that this time, but like I said, it was still better than the first (especially because I wasn't nearly as nervous). Do you know yet when that appointment will be?


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 Post subject:
PostPosted: Tue Jan 27, 2009 2:35 am 

Joined: Fri Sep 12, 2008 10:46 pm
Posts: 132
Heya OFG! When I had a colpo, just to see whether I might have any dyplastic HPV types (I have low risk that manifested) I didn't even notice that it was being done----I had it done at the same time as a pap, since I guess you might as well, with that freaky speculum shoved up there :P

I'm sure it should be just fine :) Just make sure you're relatively relaxed---for most things, if you're too tensed up things tend to be more painful. Maybe just for your peace of mind, just take a tablet of your preferred painkiller so that---even if it is a bit irritating---it's dulled.


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 Post subject:
PostPosted: Tue Jan 27, 2009 7:08 pm 

Joined: Mon Nov 03, 2008 9:23 pm
Posts: 37
OFG,

Wow, it doesn't sound like you got much info out of your dr. :(
My dysplasia was more severe, but, my regular gyn thought even at CIN3 that the leep would be used by my oncologist gyn. He was wrong.
I was sooo SOOOO nervous about my first (and only to date colpo). I think the worst part for me was that darn speculum being there so long. I really just felt small pinches...
ackk..gotta take my kid to weight training..be back to finish this..lol


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 Post subject:
PostPosted: Tue Jan 27, 2009 8:38 pm 

Joined: Mon Nov 03, 2008 9:23 pm
Posts: 37
.....cont...

I haven't heard of anything to help ones immune system. Don't smoke. Eat right, sleep enough and no stress. Do the people that make these suggestions actually get up in the morning and live life? If you're breathing-you're dealing with stress. It's that simple.
I've said it before and I stick with it. It's a crap shoot. Nobody can say either way.
I know I should be more informed about my own body but I have no idea what designation my CIN3 was. I do know that after my oncologist had a first looksie, he said he did not see cancer. He saw CIN3.
When I came too after surgery he said they had gotten it all. I don't know if I had ASCUS or LGSIl (if that's even a term). I guess I should ask eh?
It is comforting that your dr said she's only seen one case of cervical cancer. Mine had made that comment to me about being able to count on 2 hands the amount of times his procedures failed resulting in hysterectomys. In 30 years.
I have no idea about my vaginal spot. It was come back in 3 months. That's the middle of March. I try not to think about it so much. Sometimes I obsess and other times, well, that's just impossible to do.
Do you take tranquilizers or anything? I was just going to suggest taking one before the next colpo.
You know what I keep questioning? How does the CDC know roughly how many people have this if so many people clear it without incidence? If there's no need for the 90% to visit a dr to begin with..how do they come to that number?
Just pondering...
Let us know when you schedule the colp OFG.
It might be easier this time around just in the fact that that you know what to expect. The unknown is usually the worst part.


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 Post subject:
PostPosted: Tue Jan 27, 2009 10:51 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Hi guys!

Daphne - I started taking supplements right after my last biopsy in May. I started taking a prenatal vitamin because I read that folic acid is important in the prevention of cervical cancer. Ever since I started taking that vitamin in particular, my hair and nails have been growing like mad, so that is one benefit. I've never had such long nails in my life! Then I also tried taking the indol-3-carbinol for three months (I think this is similar to the DIM supplement everyone talks about on this forum) but since there is some question about how it effects birth control pills, I didn't want to be on it for too long. I am also taking vitamin c and e. So, the short answer to your question is, yes~! :)

I made my colpo appointment for March 12. I'm sure I will be on here a lot leading up to that date! And after. I hope that it's better for me this time. I don't think it could be worse - I know I've said this in here many times, but the freaking biopsy-taker got caught on my cervix! It was horrible. I bled for six days and had sharp stabbing pains in my cervix for a month afterwards. So, I changed drs and this one is much more open to giving me some kind of tranquilizer/pain killers and I just basically trust her more than my previous doctor. I do remember the speculum being quite uncomfortable - they must have to ratchet it up more than they do for a normal exam.

The other thing I am trying, and you guys might think I'm a little crazy, is hypnosis. This is why I am waiting so long until the colpo (that and a vaction I have coming up very soon!). I already had a consultation with the hypnotist and he believes he will be able to teach me how to get into a very relaxed state prior to my next colpo. After talking with him for a while, I discovered that hypno is more similar to deep meditation and it is something you can learn, rather than staring at a pendulum pocket watch like on the cartoons.

Regarding all of the statistics, you can really drive yourself mad thinking about them and trying to find info. I kind of resolved to myself after talking to my dr yesterday that I need to stop thinking in terms of statistics because what is happening to me right now is happening, regardless of whether the statistics say it is likely or unlikely. That info doesn't change where I'm at. The statistic that 90% clear the infection doesn't help me at the moment. In fact, some of these statistics could do more harm than good. After my dr commented that she has only seen 1 case of cervical cancer, for a brief moment I figured "then why go through all of this? I probably won't be the seoncd case she sees". But, that isn't any guarantee and how regretful would I feel if I chose that path and did indeed develop cervical cancer.

LWG - sounds we'll be getting some new info for ourselves in March. Be sure and keep me posted!

Daphne - please let us know how your biopsy comes back!

Thank you guys for the kind words and support.


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 Post subject:
PostPosted: Tue Jan 27, 2009 11:27 pm 

Joined: Sun Nov 23, 2008 2:00 pm
Posts: 56
I remember commenting to the doctor during my first biopsy that the speculum sure was uncomfortable. She said that was because she usually uses a plastic speculum for paps but for colpos, they go with the old metal kind -- her reasoning was that it was because they've "always done it that way." (So glad I'm not going to that doctor anymore.) Anyway, with the second colpo at my new GYN, the speculum was ten times more comfortable and the whole process went much faster.

OFG -- sounds like we're both taking the same supplements. I've been taking the indole-3-carbinol for two months now (can't seem to find DIM at any health food store) and I have noticed that my period is off -- I think that's because my birth control is failing to control it like it usually does. However, I think I'm still going to stick with the I3C for a while since it seems to be promising.

Like you said, your next colpo can't be any worse! There's no way that could happen again. I hope the hypnosis helps though. This might not appeal to you, but I also found having another person in the room helps -- when I had the nurse standing next to me as the procedure happened, it was just much more relaxing and I didn't feel so anxious. Don't know if you could request an extra person, but it's worth a shot.


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 Post subject:
PostPosted: Wed Jan 28, 2009 12:18 pm 

Joined: Fri Aug 08, 2008 10:55 am
Posts: 281
Quote:
OFG -- sounds like we're both taking the same supplements. I've been taking the indole-3-carbinol for two months now (can't seem to find DIM at any health food store) and I have noticed that my period is off -- I think that's because my birth control is failing to control it like it usually does. However, I think I'm still going to stick with the I3C for a while since it seems to be promising.


Be really careful with I3C and DIM. Because both impact your estrogen levels, they also impact the effectiveness of your BCP. Make sure while you are taking I3C or DIM to use condoms. Also, watch your consumption of E as too much E can be a bad thing.


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