I went in for a pap smear on 03/20/2009 and on 04/24/2009, the office called to tell me the pap was abnormal. I found out it was ASC-H, so I had a colposcopy which included an ECC and two biopsies (12 and 6 o'clock)...doctor said she didn't "really see anything too abnormal"...on 05/15, I called the office and my long series of calls and emails to them began. Today, June 19, I found out my biopsies came back as abnormal: Atypical Glandular Cells on two. On the ECC, the notes (I requested a copy of my labs--have only ONE) I have say "aggregate of hemorrhagic mucus 0.4 x 0.4 x 0.1". The doctor said she needs to do a repeat biopsy and an endometrial biopsy. At the very least, she is recommending a cone, possibly a hysterectomy based upon all this. My head is spinning...I thought if it were so bad, I would have known by now! Does anyone know what the mucus means? Anyone know what AGC means on colposcopy--the same as the system of ranking for pap? Is the ECC result a TUMOR? I am so scared!
I have another doctor I have consulted who is recommending an endometrial biopsy anyway, but should I see a gynecologic oncologist? Please, I would love to hear from any of you. Thanks
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confused and need some clarity
- By buzymom
- Posted June 19, 2009 at 7:39 pm · 9 replies
- In Early detection and testing
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- By buzymom
- Posted June 28, 2009 at 3:22 pm
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Ok, I got my hands on the first biopsies (three-12 o'clock, 6 o'clock, and ECC) pathology report. I wonder if anyone else has seen a report like this? I have to wait until late next Wednesday to get the results of the repeat biopsies and endometrial biopsy done last Tuesday.
Anyway, the path report says: The endocervical curetteage, as well as the cervical tissue submitted at 6 and 12 o'clock actually reveal tissue fragments which appear to be more curetted rather than a frank biopsy. These all show areas of glandular atypica which in areas appears to be dyplastic. This tissue appears to be actually coming from the endocervix, but no intact glands with surrounding stroma are appreciated. A redirected biopsy of these areas are needed to rule out/rule in true endocervical dysplasia or carcinoma in situ. This case has been reviewed by--three different paths from two different labs.
I had a repeat biopsy--but why where my first set unable to show anything important--they were all 0.4 x 0.4 x 0.1 cm each in size according the report. Anyone experience this before? What was your ultimate outcome? Please share.
- By buzymom
- Posted June 24, 2009 at 1:41 am
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Today (before I posted unfortunately, so I couldn't ask about HPV), I had an endometrial biopsy and a repeat biopsy of the cervix (seems like a colposcopy with cuts, not punch biopsy/ECC). Wednesday I will go back for even more definitive diagnostics and plan for treatment! I will also ask about HPV testing at that time. Wish me luck. Thanks for your support on here, it does really help to know I have someone to ask!
- By pepsicolarocks
- Posted June 24, 2009 at 12:25 am
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Buzymom,
ABSOLUTELY, you should get an HPV DNA test! I can't say I'm surprised that your doctor hasn't already ordered you one, but I'm very glad to hear that you are making an appointment with a doctor who is better qualified to treat you. If I was you, I would never even bother going back to that other doctor, except to collect copies of my medical records.
In answer to your question, "YES"! It is going to matter, because your test results are going to help your doctor determine the best coarse of treatment and follow up for you. There are a lot of risks assosciated with HPV that should be carefully monitored, both by you and your doctor. Best of luck to you with the new doctor!
- By buzymom
- Posted June 23, 2009 at 8:54 pm
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Just to ask...did you all have HPV tests? I have not had one. Since my pap was ASC-H rather than ASCUS, they didn't do one. Should I ask about getting one (would it help/matter at this point?) Thanks!
- By Dragonfly23
- Posted June 21, 2009 at 2:35 pm
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Hello. Given your atypical glandular cells, the diagnosis of AIS (adenocarcinoma in situ) doesn't really surprise me. I is certainly unfortunate that your doctor has not been helpful to you and appears relatively uninformed. You have not mentioned that you are HPV positive though I am assuming you are.
At this point, you need a gynoncologist. Biopsies typically only take 3 days to get results returned, someones a week and it is unfortunate as I've heard so many times from others that these docs offices wait so long informing patients of the results You should get copies of EVERYTHING regarding your test results (Ct scans, ultrasounds any tests like that) in addition to your pathology results for any and all paps and biopsies. Keep your own file with this information. Obviously, the AIS will need to be surgically removed and any further treatment will depend upon the pathology after the cone is done such as negative or positive margins. I wish you the best, keep us posted, and remember that you are your own best advocate. Do not let ANY clinician intimidate, belittle or dismiss your concerns or questions. Any good clinicial will answer all your questions regardless of how long it may take, provide all your options and potential outcomes etc. Get a second or even a third opinion if you are not comfortable wtih the doc you're dealing with.
Bonnie
- By buzymom
- Posted June 21, 2009 at 12:05 am
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Thanks for your replies. Well, it gets even better: As of this a.m., I found out at least one of the biopsies is AIS, probably two or maybe all, who knows--when her assistant called me to follow up again since I called with questions? I have called a local Mayo clinic that happens to be in my town and inquired (have to wait until Monday) to get an appointment. I am going to ask to have the biopsies read by their pathologists and go from there with whatever treatment they feel is needed. I will definitely keep you posted. I feel emotionally drained and just exhausted! Thanks for your support; I really needed it!
- By flowershoplady
- Posted June 20, 2009 at 9:49 am
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hi, buzymom. it sounds like you need a doctor who will provide you with and then explain all your test results. it sounds like the ecc results are describing the sample, the size and such, but doesn't indicate whether there's dysplasia or other abnormalities. i think you need a skilled doctor who is medically skilled and can communicate with you to provide you with details about your health situation, provide you with options along with recommendations and pros and cons, including the risks, of what he's recommending. let us know how you're doing!
- By Bymyside247
- Posted June 20, 2009 at 2:43 am
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I am absolutley apalled at the sluggish, careless way your doctor dealt with this situation. If I were you I would call the medical board and report this...and I would tell the doc that is what you plan on doing. Doctors need to know that when they are dealing with someones life, there really is no room for them to "make a mistake."
The hemorrhagic sounds like it has something to do with bleeding of sorts. About the atypical glandular cells, I have placed a link for you to click on and read. It is quite informative. Go ahead and take a look peak.
http://www.asccp.org/pdfs/patient_edu/atypical_glandular_20090416.pdf
Will you please keep us informed? You have found a fabulous place to recieve great encouragment and strength. I truly am sorry that those who are so highly paid to care about your well-being, dropped the ball in getting important results back to you. I would honeslty follow that up with a complaint; it may keep the doctor from doing this to another woman.
Best wishes
- By pepsicolarocks
- Posted June 20, 2009 at 2:17 am
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Hi, buzymom! I am absolutely appolled by the fact that it took over a month for you to get your histologic reports!! I'm not quite sure what to make of your results, but if your doctor is discussing a cone or a hysterectomy, it couldn't be good and you should definitely have been informed of this much sooner! Why did your doctor say a repeat biopsy was needed? And why did your doctor not explain to you the results of your biopsy? Sounds to me like you need to find yourself another doctor...QUICK! Since this doctor clearly has no idea what she's doing! And since you're going to be switching doctors, anyway, you should definitely see a Gyn Oncologist. Best of luck to you!
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