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CatherineElise 09-02-2008 06:09 PM

Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical glandu
Last week a gynecological oncologist told me that b/c I had a pap smear 2 months ago (June '08) that showed atypical glandular cells that I will need a cone biopsy (this will be my 2nd) asap. If they don't find the origin of the atypical glandular cells then she will need to do a Radical Hysterectomy. The June '08 pap was negative for HPV and negative for dysplasia. Last week the gynecological oncologist did a pap smear and a coloposcopy. Visually she said "I don't think you have cancer" but "it's my job to find out where the atypical glandular cells are coming from. You could die from this." I just found out that pap smear from last Monday(August '08) in her office came out completely normal/negative. She still thinks her plan of action "cone biopsy then radical hysterectomy" is the correct one.

This strikes me as a bit hasty since my pap smear was clear of dyplasia and clear of HPV as well as clear of atypical glandular cells. After the June pap, my OB/GYN followed due process and did 3 biopsies. The biopsies came out 100% normal. But my OB/GYN gave me the option to see a gynecological oncologist 'just to be on the safe side'. It should be known that prior to my '06 cone biopsy, I had CIN3 (severe dysplasia) and HPV.

I am perplexed by this gynecological oncologistís diagnosis. I sent my reports to MD Anderson and they basically said "Go away... you're not a candidate for an oncologist... you were "cured" by that '06 cone biopsy".

Is there an MD out there that can advise me.

Thank you.

Pickle Eyes 09-02-2008 07:28 PM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
That just sounds odd. I don't understand why you were sent to a gyn/onc in the first place. Was it for the CIN III? How was that diagnosed? Who did the biopsy (and what was it) that diagnosed CIN III?

I strongly suggest you get a second or third opinion before you let anyone cut on you.

I wish I could be of more help.

CatherineElise 09-03-2008 03:57 AM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
THANK YOU SO MUCH FOR YOUR REPLY!! It's so nice to hear a sound voice. I have been SO PERPLEXED. I hate to think this way but it feels like the GYN ONC is rushing me into another cone biopsy and radical hysterectomy. Her nurse called yesterday (with my negative pap result and nothing negative to say about the colposcopy) trying to book my cone biopsy "before the doctor went on vacation for a few weeks". I have no CIN; no dysplasia; no test results saying I still have HPV. Sloan Kettering and MD Anderson both were very confused on why I was even calling.

This OB ONC is doing this all in the name of the 'atypical glandular cells found in the Pap of June of '08'.... even though 3 subsequent biopsies, 2 colposcopies and another pap came out completely normal. What the heck?? what am i suppose to think??

Pickle Eyes, can I ask what city you are in in Texas? I am in Austin. Going to NY and Boston for 2nd and 3rd opinons in coming weeks but I'd love a rec on a great doc here more locally.

Thanks so much again.

PS I've read quite a few of your posts since I signed up last eve... VERY VERY helpful!

CatherineElise 09-04-2008 10:25 AM

2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
I am following up on my Tuesday night post. A doctor told me that I needed to find the origin of atypical glandular cells by 1st having a deep and wide cone biopsy and then... if the AGUS are not found, then I will need a radical hysterectomy. This sent me into a HUGE investigation. I talked with doctors, made appts with specialists and researched. Here is a synopsis of what I learned:

Dr XXX (leaving name out b/c of fear of the Doctor Network) recommended a radical hysterectomy for me because I had atypical glandular cells in one pap smear. All subsequent pap smears and biopsies were completely normal. She wanted to rush the surgery. I sought a 2nd opinon from MD Anderson and a 3rd opinon from Sloan Kettering. Gynecological oncologists from both hospitals told me that Dr. XXXs action plan was highly irresponsible. A nurse from MD Anderson told me to 'stay far away from Dr XXX' and that 'unfortunately there is a lot of money for doctors in giving hysterectomies'.

On top of that, the reports she wrote - which I retrieved from their medical records department were riddled with inaccuracies. She stated that I had 2 cone biopsies when I only had 1 cone biopsy. She also got the dates of my LEEP and Cone Biopsy wrong by two (2) years. The report was so inaccurate, I could not have forwarded to another doctor.

The appointment was a waste of a lot of time, energy and money. It was also expensive and time-consumming to "undo" her diagnosis ...referring to the 2nd and 3rd opinons I sought.

I want to tell people in my town to be extremely wary of Dr XXX. I don't believe her intentions are in the best interest of the patient.

Pickle Eyes 09-04-2008 06:58 PM

Re: 2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
Catherine, I know I can mention a doctor's name as long as I don't post any contact info, but all I feel comfortable posting is that I think Dr. E. B. S. is phenomenal, she is my doctor (same city as you said). There are 2 female gyn/oncs in this town. When I called MDAnderson, they quickly said, "Oh Dr. S, yes we know her very well" in a very enthusiastic voice.

I sure hope that isn't who you saw.

CatherineElise 09-07-2008 06:20 AM

Re: 2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
can you tell me why you think she's phenomenal?

Pickle Eyes 09-07-2008 12:20 PM

Re: 2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
She explained everything so that I understood it. She answered all of my questions. She was matter of fact, with compassion. She runs on time (with less than a 10 minute wait). Her nurse answers my 5 hundred-thousand questions without sounding exasperated.

After my biopsy (the day before my hyst) she went in to the pathologist and viewed my screens. She then came to me to explain what they saw and what we needed to do surgically. Her post-surgery impression (that she got all of the cancer in the biopsy and that there wasn't any in the remaining tissue removed during the hyst) was right on what the pathology report said a week later. My 2 lesions were less than or equal to 1.6mm across and 1mm deep. I was impressed that her intuition was shown accurate by the pathology report.

And what can I say. She removed the cancer from my body. I'm relieved!

Am I guessing that is your doctor?

I am having a few concerns (that have only come up lately) but they are with scheduling my follow up appointment. I had my 3 month follow up coming up later this month. I got a call a few weeks ago that I was going to have to see the PA instead of the doctor at the appointment. That was ok. But on Friday, I got *another* call from her office saying we'd have to change my rescheduled appointment. I want to know what is going on. So I'm not pleased with that, right now. I'll keep you posted.

CatherineElise 09-07-2008 03:34 PM

Re: 2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
I know that is she going out of the country on vacation until early October... that may be why you are gettng the run-around with appointments. This is why they tried to get me in for the cone before then. The nurse was snotty about it -- when I said 'that sounds early' she responded with "you can't just schedule a cone biopsy whenever you want". She also gave me attitude when I rejected her list of doctors for a 2nd opinion.

I'm happy for you that her intution and manner worked out for you. I only had one visit with her and in the office meeting (prior to exam) she spent a lot time explaining things. It allowed me to get a solid understanding of what the issues are. I hadn't had to talk about this subject since June 2006. Since '06 I had negative paps (and was consummed with my Nov '06 to Jun '07 pregnancy). I was however extremely taken back when Dr xxx spent over a paragraph in her report noting my lack on knowledge in the cervical cancer world such as: "despite her 3-year history with cervical dysplasia, she does not have a clear functional understanding of biology, hpv, or cervical anatomy or the role of pathology in evaluating it." She went on for about 150+ words with more of the same. Her language was surprising. On top of that, the beginning of the report was riddled with inaccuracies. That made me think she a bit sloppy to say the least.

MD Anderson has me scheduled for the Friday after next. Dr Milbourne has already reviewed my all reports. She said I was 'cured' by the June '06 cone biopsy and did not understand why I went to a gyn/onc in the first place. Dr xxx read the same reports and her conclusion was "first a deep and wide cone biopsy, then if I can't find the origin of the Atypical Glandular cells then I will need to do a radical hysterectomy". Dr Milbourne completely disagreed with this. I was also alarmed to see that she verbally said "then I will need to do a radical hysterectomy" BUT did NOT put that in her report as she stated. This made me think that she didn't want it recorded.

I also had a negative pap in her office and the pathologist report came back saying no hpv... but her plan of action remained the same. I'm no MD but this surprised me.

I wish I wasn't alarmed by this physician but from my experience things just don't seem kosher to me.

Thank you for sharing your experience. I have a friend who has friends who use her (they are cancer patients) and they all "love her".

Pickle Eyes 09-07-2008 05:44 PM

Re: 2nd and 3rd Opinions say "NO CONE, NO HYSTERECTOMY"...
Catherine, now I'm thinking I need to go back and read my reports. It seems like nothing stood out as inaccurate the first time or two I read them. I'm sorry to hear that you didn't have a good experience with her. It goes to show that it is different for each patient. I suggest you go with your gut instinct. You have to take care of yourself.

So your appointment is with MDA on the 19th? I wish you the best!

I'm going to be calling Dr. XXX's office tomorrow to see what is going on with my appointment. I'm a bit stumped as to what is going on.

Take care of yourself, ok?! ;)

DiamondLight 09-19-2008 04:33 PM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
I'm not a doctor and can't give advice, but I wanted to share my experience. I had a pap smear that came back AGUS and it didn't show on the cervical biopsy at came back fine. However, a resulting leep and later a cold knife cone did show the pap was correct. It was there, the biopsy just didn't get it....probably because it's up inside the cervix. Which also explains why it can be missed on paps. Anyhow, I'm not an expert (still learning myself), but the glandular stuff can be tricky.

Pickle Eyes 09-19-2008 06:50 PM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
Hey Catherine, how'd your appointment go? Were you able to go? or was it closed because of Post-Ike damage?

CatherineElise 09-20-2008 12:54 AM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
Thanks for your response! What did the LEEP and Cone show/the pathologist's report?


CatherineElise 09-20-2008 01:05 AM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
Hi Pickle Eyes. Funny it's 3am and I got back from Houston at 5pm today... woke up to write an email to a friend and thought you may have written and voila!

My experience at MD Anderson was GREAT! I could go on for a while about it but I need to get back to bed... I meet with nurse, nurse practioner and a doctore at the colposcopy clinic. The doctor did a colposcopy and thought my cervix was 'interesting' (ha!ha!)... she said it was significantly scarred (yep.) but the way to scarred was different ...apparently we all scare differently... I have psorasis and super red patchy skin in several areas which may cause redness in scarred areas on my cervix. She thought these scarred areas may be inferred as lesions by other doctors. Her 'gut' was that I will not need any surgical procedure but to be certain they took additional biopies and will be testing my July irregular pap (AGUS) slides again at MD Anderson. Results to come in towards the end of next week. I am super hopeful. If the slides come back fine just another checkup in a few months... if there is something there... I go back next month.

The trip cost me $1300 (!!) (i have to meet a deductible first) but I feel so good about having gone down there. I will certainly let you know the result. Thanks for hanging in there with me. Hope things are A-OK with you!

as an aside... one interesting thing I learned is that sometimes AGUS cells on Paps are normal.. and show up when the pap is taken near your period (which my June one was)... still not discounting it's potential for significance.

Pickle Eyes 09-20-2008 11:27 AM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
I am soooooo glad that appointment went well for you!!! Having confidence in your doctor goes a loooong way! It sounds like our pathology reports will be coming back about the same time! (I had my 3 month post op yesterday).

((((hugs)))) I'm glad you feel so good about this! I'm hoping and praying it goes well!

CatherineElise 09-21-2008 06:47 AM

Re: Do I need a Cone Biopsy and possibly a Radical Hysterectomy?? lurking atypical gl
you are SO SWEET. I'll say a prayer for you as well..

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