AIS specialists in California - San Francisco or LA/San Diego?
Hi all,
First, thanks to all of you beautiful and brave ladies for your posts and advice. I have combed through several of the AIS threads over the last few months and found very useful information & reassurance. The lack of information about AIS in general, has been very frustrating and confusing, which I'm sure you all also have found. It is wonderful to hear from real people about all this and know that there are people who understand how I'm feeling.
My question is if anyone can recommend any California oncologist who specialize in AIS/Adenocarcinoma in particular. I had noticed that several of you are in California, so thought I'd reach out. I'm in San Francisco, but my family is in the LA/OC/San Diego areas, so I could go there for a visit.
My story seems to be rather similar to most of the AIS posts ...
Perfect paps my whole life, then Pap in October came back abnormal - atypical glandular endocervical cells - AGUS + high risk HPV.
Colposcopy/ECC in Nov came back dysplasia and adenocarcinoma, at minimum AIS, but inconclusive.
I had the cold knife cone (which to echo everyone else wasn't too bad really) in Dec. The results were the best possible given all the previous findings! AIS only, no further invasion and negative margins.
My doctor so far is still strongly recommending a hysterectomy as soon as I'm ready. I'm still getting my head around all this. Such a dramatic surgery seems like overkill for something labelled Stage 0 / precancer & I'm rather appalled by the idea. The studies I've read on seem divided on if negative margins are a good indicator of residual disease/reoccurrence or not - therefore if conservative management is ok, with the more recent ones leaning toward being more ok.
On the other hand, I know I should be thankful that it is pretty much 100% curable, so better safe than sorry & let's cure this thing, right? I'm struggling with how to make that decision, hence the request for whom to ask for 2nd opinions.
Thanks again to all of you and I'm hoping to hear good results for you too.
Re: AIS specialists in California - San Francisco or LA/San Diego?
Just had a LEEP and D&C today. They found a lesion but won't find out til Tuesday. I'm in Southern CA and still treating w OBGYN. Did you find an AIS specialist? I'm so freakin scared.
Re: AIS specialists in California - San Francisco or LA/San Diego?
Quote:
Originally Posted by heidisf
My doctor so far is still strongly recommending a hysterectomy as soon as I'm ready. I'm still getting my head around all this. Such a dramatic surgery seems like overkill for something labelled Stage 0 / precancer & I'm rather appalled by the idea. The studies I've read on seem divided on if negative margins are a good indicator of residual disease/reoccurrence or not - therefore if conservative management is ok, with the more recent ones leaning toward being more ok.
Based on this being stage 0 and the research you've done, hysterectomy sounds like overkill to me too. Hysterectomy is the most overused surgery after c-section with ACOG declaring that 76% don't meet their criteria. Only 2% are done for cancer. And it's not a "benign" surgery.
Finding a good oncologist who isn't "hysterectomy happy" sounds like a good plan but not sure how to find the ones who don't over-treat. Also, something to consider if you haven't already is that pathologists have different levels of experience just as doctors do so sometimes a "second opinion" from an "expert" pathologist can be helpful but not sure how you go about doing that.
Re: AIS specialists in California - San Francisco or LA/San Diego?
@Sealbchgirl - I have mostly seen doctors up in San Francisco. But, I do have two recommendations for you for gynecology oncologists.
First - Dr. John Brown in Newport Beach is very good. I saw him for an oddly unrelated issue last year. I just had one visit, but was impressed. I spoke with him on the phone about the AIS and he was VERY informed.
Second - Dr. Beth Karlan at Cedars Sinai. I didn't see her personally, but I heard she is the one to see there.
Hang in there. It is very scary, but AIS is completely manageable I'm finding out! At least there are options and has a very high cure rate!
@STLouisgal - Thanks so much for the idea of the 2nd opinion on the pathology! I actually had this done because one of the doctors I saw recommended it (he said there can be up to a 25% difference in pathology readings!). It had never occurred to me that such a thing could even be done & great to pass on that information! The 2nd opinion concurred with the first, which I guess is good - still stage 0 and negative margins.
To all, I'm still struggling with the hysterectomy vs. close followup. Between two ob/gyn docs (my first one is out on sabbatical) and two oncology docs, I basically got 4 opinions of further treatment after the cold knife cone.
1 - hysterectomy definitely recommended. Close followup is a little risky, but if childbearing is a consideration, it could be considered as a 2nd option.
2 - hysterectomy "is the official recommendation" (distancing herself from it, without coming out and saying so), but close followup seems to catch any changes as long as one really does the full course of followup - every 4-6 months - including ECC.
3 - Either one is equally a safe course.
4 - risk of surgery probably outweighs risk that it will advance without followup catching it.
So, that's about the full range and doesn't help the decision really, but it is good to know that the doctors don't find it as drastic a diagnosis as I was. For now, I'm doing my first close followup appointment next week. And I'll decide from there.
One interesting thing is almost the docs agree that if a woman has gotten past a certain number of years (5-10 years depending on the doc) of close followup, then they don't personally recommend a hysterectomy anymore even though the international board of gynecology still does.
Re: AIS specialists in California - San Francisco or LA/San Diego?
Glad to hear you got another pathologist's opinion. Of course, deciding against hysterectomy now doesn't mean you can't go that route later if f/u doesn't work out. It's just such a final and life-altering decision, childbearing complete or not. Best of luck to you!
