Update on my daughter--need opinions

Here is what I posted recently:

>>>>>>>>>>>>>>>>>

My daughter is 27 years old. She recently had a Pap Test which came out
horrible (worst possible score). This was a shock as she has yearly Pap
tests and they have always come out just fine.

A follow-up biopsy was better than expected. indicating:

ECC-normal

CERVIX: CIN -1/2

She has been told that this means carcinoma in sito (non-invasive cancer)
but also that this is a pre-cancerous dysplasia situation, which will
definitely turn into cancer if she does nothing.

So, which is it??

Apparently, the next step is a "colonization" or as an alternative a LEEP
procedure (she is leaning towards this - she hopes to have children some day
and while neither surgery makes having a child impossible, the latter
procedure is easier and better and she could have the other procedure if the
LEEP is insufficient).

Needless to say, we are plenty worried about all of this.

Does she have cancer of pre-cancer? Is it merely semantics?

Any advice/suggestions.

Our daughter has lined up appointments for a second and third opinion.



Mel
>>>>>>>>>>>>>>>>>>>>>>>>>.

Here is an update. I have been spending tons of hours researching this and so has our daughter. She has an extremely good brain and thinks logically. Our best guess, from all that we have read, is that this is not yet cancer. The ECC = normal is a major big deal. It means the cervical canal is fine. The CIN-1/CIN-2 does mean dysplasia. Regardless, if NOTHING is done then she is TRULY rolling the dice. Her immune system might reverse this. But that is (from our reading) a 50-50 gamble. So, that is not an option.

I think your daughter has been rushed into this before she has had a chance to educate herself. CIN I generally clears itself up. From everything I have read, CIN II has a 40% chance of clearing itself up, a 40% chance of staying the same, and a 20% chance of progressing to CIN III. Cold knife cone biopsy is definitely more accurate, but it seems awfully aggressive for a case of dysplasia that doesn't have any glandular or endocervical canal involvement. I'm not saying she shouldn't schedule a conization, but it doesn't sound like she's been educated very well.

In addition, per the ACOG, there is actually a 7.9% risk of cervical incompetence for LEEP, and it's higher for cold knife cone biopsy. Since she is concerned about children, why were the other surgical options not mentioned to see if she qualified, first? Unless she has dysplasia in the endocervial canal and or the endocervical glands, a cone biopsy seems awfully extreme. If there is just cause for taking out that much, I can understand it, and if there is any question she might have something more invasive, then I can especially understand it. If she really believes this is the best choice for her, then she needs to make the doctor measure her cervix before the surgery. That way, when she gets pregnant, the OB/GYN will measure her cervix and compare its length with the original length.

Thirdly, it always disappoints me when doctors cover for each other in their "fraternity", especially when the colleague in question didn't manage the case very well. Unfortunately, it happens all the time. Defending the reputations of the other doctors wasn't necessary, since it obviously stuck a discordant note with your daughter and you.

Lastly, the doctor should have discussed what your daughter could expect, afterward, before she signed the paperwork. Neither her nor you should have to ask.

I do hope everything goes well for you daughter.

On 3/16/2009 herenow wrote:

I think your daughter has been rushed into this before she has had a chance to educate herself. CIN I generally clears itself up. From everything I have read, CIN II has a 40% chance of clearing itself up, a 40% chance of staying the same, and a 20% chance of progressing to CIN III. Cold knife cone biopsy is definitely more accurate, but it seems awfully aggressive for a case of dysplasia that doesn't have any glandular or endocervical canal involvement. I'm not saying she shouldn't schedule a conization, but it doesn't sound like she's been educated very well.

In addition, per the ACOG, there is actually a 7.9% risk of cervical incompetence for LEEP, and it's higher for cold knife cone biopsy. Since she is concerned about children, why were the other surgical options not mentioned to see if she qualified, first? Unless she has dysplasia in the endocervial canal and or the endocervical glands, a cone biopsy seems awfully extreme. If there is just cause for taking out that much, I can understand it, and if there is any question she might have something more invasive, then I can especially understand it. If she really believes this is the best choice for her, then she needs to make the doctor measure her cervix before the surgery. That way, when she gets pregnant, the OB/GYN will measure her cervix and compare its length with the original length.

Thirdly, it always disappoints me when doctors cover for each other in their "fraternity", especially when the colleague in question didn't manage the case very well. Unfortunately, it happens all the time. Defending the reputations of the other doctors wasn't necessary, since it obviously stuck a discordant note with your daughter and you.

Lastly, the doctor should have discussed what your daughter could expect, afterward, before she signed the paperwork. Neither her nor you should have to ask.

I do hope everything goes well for you daughter.

Herenow:

Thanks for your response. Believe me we have both looked at all kinds of options. It is not an easy nor clearcut decision to make. I can assure you that the range of possibilities liies from watchful waiting (that seems to be your suggestion) to removing the uterus (a very bright friend of mine who is a retired doctor advocates this). Although the decision has been made in a relatively brief amount of time, it was done after quite a bit of thought and research. She did get 3 opinions from, supposedly, top-notch people. My daughter has many contacts. She is in the movie production business out in California and she was able to solicit opinions and doctor recommendation from well-known people who can afford to seek out the best treatment. You seem to be denigrating the doctors and appear to be convinced that they cover for each other. I suspect there is a large element of truth there, but I do think my daughter does a good job of cutting through some of the BS. We are convinced that she got the opinion of 3 good people.

I believe I indicated her process of deciding on this 3rd doctor. He is a top gyncological cancer expert. He is an oncologist first. That is important  should any future problems arise. While she definitely wants to have children, her own health prognosis is the key. It may or may not be overkill. My friend, the doctor, pointed out that with cancer of even pre-cancer your best shot is your first one. 

The decision has been made and surgery is scheduled for tomorrow. We tried to make the best decision with the information at hand. It is interesting that my daughter's decision agrees with mine. We both came to the same conclusion independently. I really do appreciate your input. It has certainly been helpful, psychologically, knowing that these biopsy results are not THAT bad!

Thanks for your response. Believe me we have both looked at all kinds of options. It is not an easy nor clearcut decision to make. I can assure you that the range of possibilities liies from watchful waiting (that seems to be your suggestion) to removing the uterus (a very bright friend of mine who is a retired doctor advocates this). Although the decision has been made in a relatively brief amount of time, it was done after quite a bit of thought and research. She did get 3 opinions from, supposedly, top-notch people. My daughter has many contacts. She is in the movie production business out in California and she was able to solicit opinions and doctor recommendation from well-known people who can afford to seek out the best treatment. You seem to be denigrating the doctors and appear to be convinced that they cover for each other. I suspect there is a large element of truth there, but I do think my daughter does a good job of cutting through some of the BS. We are convinced that she got the opinion of 3 good people

Compiler, "Watching and waiting" was not my suggestion. Making an informed decision was, especially since your daughter and you were not given accurate information. (The first doctor said she might have cancer, and the second did not tell her the true risk of preterm delivery.) I'm sorry you misconstrued what I was trying to tell you.

But no, I don't have a lot of faith in doctors, from personal experience. They're not gods, they're just doctors. This is why it's up to us to educate ourselves, first, to make sure their recommendations are accurate. When those recommendations are correct, it puts more confidence in their judgement. When they prove incorrect, it saves us a lot of future grief. Trustworthy doctors want their patients educated. Being in Hollywood does not guarantee anything.