Uterine biopsy not enough tissue extracted: Now What?

Posted by tclare15 @tclare15, Jan 28 12:05pm

I am post menopausal (72) and had vaginal discharge and spotty bleeding. Ultrasound early this month showed Endometrial thickness of 15 mm and a small 0.6 cm hyperchoic avascular lesion surrounded by fluid. Though I requested a hysteroscopy so that the lesion could be removed and tested (as was recommended on the ultra sound report), my gynecologist said the first step needed to be in-office ultra sound guided endometrial biopsy.

During the procedure, I asked if the lesion would be removed , she indicated it might or might not be, but she would concentrate in that area for removal of tissue. A week later, she called and said "no cancer is seen", but when I asked her to actually read the report to me, she admitted that no cancer was seen because there was not enough tissue retrieved at the biopsy to actually test ("No definitive endometrial tissue identified"....so the biopsy was "inconclusive" and she did not know if the lesion was still there or not!

So, now I am left with no more information than I had before and the additional worry that the lesion may or may not be available for testing at this point! She suggested waiting to see if spotting re-occurs and said my chances of actually having cancer were tiny, but if I'm one of the 1% who actually have it, that is no satisfactory answer! What should be my next step?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@tclare15

Point well taken! I realize what a knot I've put my stomach in trying to anticipate everything that could go wrong and trying to prevent it somehow. Thank you for the sage advice.

Jump to this post

You are welcome!

REPLY
@tclare15

I'm writing to let you know what happened with my Stanford visit on Feb. 7th as you requested. I was pretty impressed with how attentive the doctor was with my concerns and she was very thorough with answers and plan of action. Since the biopsy done by the previous gynocologist was unsucessful and there was not sufficient endometrial tissue for the pathologist to work with from that procedure, the next step needs to be a hysteroscopy which will allow the doctor to see clearly the inside of the uterus. She will get a good sampling of tissue as well as locate and take out the lesion (if it is still there) for pathology. She was very clear that she understood the possibility of puncture was a huge concern to me given the natural post-menopausal condition of my reproductive organs, and addressed that saying she is and will be very mindful of that when the procedure takes place. Today I had a telehealth visit with her just to clarify points and plan for hysteroscopy. The problem is that the soonest she can get me in for the procedure will be in April. She assured me that given the images from the ultrasound and reading the reports, she felt confident the wait would not be problematic. She will perform a hysteroscopy in the Operating room at the hospital under MAC (Monitored Anesthesia Care). If the results are shown to be pre-cancer or cancer, then she will refer me to Stanford's oncology gynecologist department for further action (which I have already determined will be a hysterectomy) . Right now, I just need to wait for the scheduler to call me and schedule the surgery. I find that researching on-line is both scary and re-assuring depending on what reports and clinical trials I read and I clearly need to step back from that at some point and trust my decisions thus far. There is so much to absorb, and without a medical background, it is hard sometimes to put what I read into helpful and relevant perspective. Thank you so much for your concern and comments. Really appreciate that!

Jump to this post

@tclare15 Thank you for sharing all of these details of your appointment. I'm relieved to know that your doctor spent so much time with you and explained, in detail, what and how the hysteroscopy procedure will go. Like you, I would be nervous waiting until April but it sounds like your doctor was reassuring about the wait. Perhaps there will be a cancellation and you'll get in before April?

I'm going to respond to your concern in a following post about residents present at Stanford during your procedure. I have received and continue to receive my specialty care at Mayo in Rochester. Mayo Clinic is an academic medical center and there are frequently residents and fellows in my appointments. I was referred to Mayo for endometrial cancer and so that's where I had my hysterectomy, my radiation treatments, as well as all of my cancer surveillance appointments. There was a physician present (fellowship in gyn-oncology, not a resident) during hysterectomy procedure and this was clearly detailed in my surgery notes. In fact, I met the gyn-oncology fellow in pre-op. I personally have great confidence in teaching hospitals because the residents and fellows are under the supervision of these skilled physicians who are on the faculty at teaching institutions. I was a professor in a university with an academic medical center and while my academic appointment was not in medicine I did interact frequently with physicians in research. I worked with physicians at "the top of their game" and this is what I have observed in my own care at Mayo Clinic as well as the care my partner receives at Mayo. They conduct research and they know the literature in their respective fields. I hope this will give you more confidence in your upcoming hysteroscopy procedure.

REPLY
@naturegirl5

@tclare15 Thank you for sharing all of these details of your appointment. I'm relieved to know that your doctor spent so much time with you and explained, in detail, what and how the hysteroscopy procedure will go. Like you, I would be nervous waiting until April but it sounds like your doctor was reassuring about the wait. Perhaps there will be a cancellation and you'll get in before April?

I'm going to respond to your concern in a following post about residents present at Stanford during your procedure. I have received and continue to receive my specialty care at Mayo in Rochester. Mayo Clinic is an academic medical center and there are frequently residents and fellows in my appointments. I was referred to Mayo for endometrial cancer and so that's where I had my hysterectomy, my radiation treatments, as well as all of my cancer surveillance appointments. There was a physician present (fellowship in gyn-oncology, not a resident) during hysterectomy procedure and this was clearly detailed in my surgery notes. In fact, I met the gyn-oncology fellow in pre-op. I personally have great confidence in teaching hospitals because the residents and fellows are under the supervision of these skilled physicians who are on the faculty at teaching institutions. I was a professor in a university with an academic medical center and while my academic appointment was not in medicine I did interact frequently with physicians in research. I worked with physicians at "the top of their game" and this is what I have observed in my own care at Mayo Clinic as well as the care my partner receives at Mayo. They conduct research and they know the literature in their respective fields. I hope this will give you more confidence in your upcoming hysteroscopy procedure.

Jump to this post

Your message is very reassuring and I sure appreciate it!

REPLY
@tclare15

Your message is very reassuring and I sure appreciate it!

Jump to this post

@tclare15 My earlier message was getting long so I did not add the following which I will do now.

My brother was treated for prostate cancer at Stanford. His doctor (medical oncology with a speciality prostate cancer) is outstanding. When he was diagnosed with prostate cancer by his urologist (in private practice) I urged my brother to go to an academic medical center. My brother is also in the Bay Area so for him it was Stanford or UCSF. We've been impressed with his care.

REPLY

My cancer was detected, or at least strongly suspected, by a CAT scan with contrast. Ask for that as a next step. I will be 65 this month.

REPLY
@naturegirl5

@tclare15 My earlier message was getting long so I did not add the following which I will do now.

My brother was treated for prostate cancer at Stanford. His doctor (medical oncology with a speciality prostate cancer) is outstanding. When he was diagnosed with prostate cancer by his urologist (in private practice) I urged my brother to go to an academic medical center. My brother is also in the Bay Area so for him it was Stanford or UCSF. We've been impressed with his care.

Jump to this post

We are indeed fortunate here in the Bay Area to have two great teaching hospitals within an hour or less drive. You have been so helpful to me with your re-assurances and information.

REPLY
@dovelandgriff

My cancer was detected, or at least strongly suspected, by a CAT scan with contrast. Ask for that as a next step. I will be 65 this month.

Jump to this post

Thankyou...I'll definitely keep this suggestion on my list of points to cover on my next visit.

REPLY
@tclare15

I'm writing to let you know what happened with my Stanford visit on Feb. 7th as you requested. I was pretty impressed with how attentive the doctor was with my concerns and she was very thorough with answers and plan of action. Since the biopsy done by the previous gynocologist was unsucessful and there was not sufficient endometrial tissue for the pathologist to work with from that procedure, the next step needs to be a hysteroscopy which will allow the doctor to see clearly the inside of the uterus. She will get a good sampling of tissue as well as locate and take out the lesion (if it is still there) for pathology. She was very clear that she understood the possibility of puncture was a huge concern to me given the natural post-menopausal condition of my reproductive organs, and addressed that saying she is and will be very mindful of that when the procedure takes place. Today I had a telehealth visit with her just to clarify points and plan for hysteroscopy. The problem is that the soonest she can get me in for the procedure will be in April. She assured me that given the images from the ultrasound and reading the reports, she felt confident the wait would not be problematic. She will perform a hysteroscopy in the Operating room at the hospital under MAC (Monitored Anesthesia Care). If the results are shown to be pre-cancer or cancer, then she will refer me to Stanford's oncology gynecologist department for further action (which I have already determined will be a hysterectomy) . Right now, I just need to wait for the scheduler to call me and schedule the surgery. I find that researching on-line is both scary and re-assuring depending on what reports and clinical trials I read and I clearly need to step back from that at some point and trust my decisions thus far. There is so much to absorb, and without a medical background, it is hard sometimes to put what I read into helpful and relevant perspective. Thank you so much for your concern and comments. Really appreciate that!

Jump to this post

This is an update to my experience at Stanford regarding post menopausal workup for 15 mm thick endometrial thickness, Post menopausal bleeding, and a small lesion found on Transvaginal Ultrasound. I need to say this far my experience has been frustrating. Initial consult with gynecologist was fine and plan for operating room hysteroscopy decided upon. Dr. forgot to send in request for the OR, so this set me back a week and the operation could not be scheduled until May, so I opted for an "in office" hysteroscopy with another doctor which was a week ago (April 15). Message from Attending Physician sent to me a couple of days after procedure says "Good News: no cancer or pre-cancer..no need for additional treatment or workup....Let me know if you would like to dicuss the results further". I then look at the attatched Pathology report which says under Diagnosis comments: "The sections demonstrate extremely scant strips of surface inactive endometrium. There is not sufficient intact endometrium showing endometrial glands with stroma to evaluate for hyperplasia or carcinoma. Additional sampling is suggested if clinical concern persists".......So Again...I am left with questions and insufficient tissue to make a diagnosis, BUT the gynecologist is saying I'm in the clear ... Has anyone on this forum encountered such a conflicting situation? Am I reading this correctly? The Resident's notes after the procedure indicated no lesion was found, but the pathology report claims the operation was "hysteroscopic polypectomy"..... I am so confused! Any light to be shed on this? I have left a message asking for an appointment to discuss this with the doctor, but I am frankly unsure now about getting a straight answer.

REPLY
@tclare15

This is an update to my experience at Stanford regarding post menopausal workup for 15 mm thick endometrial thickness, Post menopausal bleeding, and a small lesion found on Transvaginal Ultrasound. I need to say this far my experience has been frustrating. Initial consult with gynecologist was fine and plan for operating room hysteroscopy decided upon. Dr. forgot to send in request for the OR, so this set me back a week and the operation could not be scheduled until May, so I opted for an "in office" hysteroscopy with another doctor which was a week ago (April 15). Message from Attending Physician sent to me a couple of days after procedure says "Good News: no cancer or pre-cancer..no need for additional treatment or workup....Let me know if you would like to dicuss the results further". I then look at the attatched Pathology report which says under Diagnosis comments: "The sections demonstrate extremely scant strips of surface inactive endometrium. There is not sufficient intact endometrium showing endometrial glands with stroma to evaluate for hyperplasia or carcinoma. Additional sampling is suggested if clinical concern persists".......So Again...I am left with questions and insufficient tissue to make a diagnosis, BUT the gynecologist is saying I'm in the clear ... Has anyone on this forum encountered such a conflicting situation? Am I reading this correctly? The Resident's notes after the procedure indicated no lesion was found, but the pathology report claims the operation was "hysteroscopic polypectomy"..... I am so confused! Any light to be shed on this? I have left a message asking for an appointment to discuss this with the doctor, but I am frankly unsure now about getting a straight answer.

Jump to this post

@tclare15 - what a frustrating series of experiences. I share your skepticism that you will get a straight answer during your upcoming appointment. However, it is probably necessary to clarify your gyn's perspective and ascertain her explanation for why her opinion diverges from that of the pathologist.

I think the pathologist was advising you to have another procedure done. S/he was giving you a head's up that the purpose of the hysteroscopy was not accomplished. Have you considered a second opinion?

I am not in the medical field. But I was in a similar situation to you 9 months ago: long past menopause with bleeding and abdominal pain. An ultrasound showed my endometrial lining to be 18 mm. My gyn wanted to do an in-office endometrial biopsy. I declined and insisted on a procedure in a hospital under sedation. I had a hysteroscopy and D & C in hospital. Pathology report came back with diagnosis of endometrioid cancer, FIGO stage 2. Subsequent CT scan showed pulmonary nodules, subsequent PET scan and lung biopsy showed metastases. I had hysterectomy and BSO in January 2024 (pathology report showed 100% myometrial invasion). Started chemo and immunotherapy in February, and am now N.E.D. So kind of a bad news/ good news scenario.

All along the way I had to speak up for myself, and follow up when professionals (or their admin staff) dropped the ball. It's tiring and frustrating. When I asked my 1st gyn a series of questions about anesthesia, she blurted out, "Do you want to cancel this surgery? Because I'm coming in on my day off." She sounded like my mother on her worst day. Not wanting an angry woman with a sharp instrument rummaging around in my uterus, I canceled the surgery and started all over again with a different gyn practice and different hospital. In sum, we have to navigate not only our anxiety about serious health issues, but we have to deal with other obstacles, as well.

But this is your health. No one in health care will care as much as you do. I am thinking of you, and wishing you strength and much better outcomes in your next steps.

REPLY
@blanchette

@tclare15 - what a frustrating series of experiences. I share your skepticism that you will get a straight answer during your upcoming appointment. However, it is probably necessary to clarify your gyn's perspective and ascertain her explanation for why her opinion diverges from that of the pathologist.

I think the pathologist was advising you to have another procedure done. S/he was giving you a head's up that the purpose of the hysteroscopy was not accomplished. Have you considered a second opinion?

I am not in the medical field. But I was in a similar situation to you 9 months ago: long past menopause with bleeding and abdominal pain. An ultrasound showed my endometrial lining to be 18 mm. My gyn wanted to do an in-office endometrial biopsy. I declined and insisted on a procedure in a hospital under sedation. I had a hysteroscopy and D & C in hospital. Pathology report came back with diagnosis of endometrioid cancer, FIGO stage 2. Subsequent CT scan showed pulmonary nodules, subsequent PET scan and lung biopsy showed metastases. I had hysterectomy and BSO in January 2024 (pathology report showed 100% myometrial invasion). Started chemo and immunotherapy in February, and am now N.E.D. So kind of a bad news/ good news scenario.

All along the way I had to speak up for myself, and follow up when professionals (or their admin staff) dropped the ball. It's tiring and frustrating. When I asked my 1st gyn a series of questions about anesthesia, she blurted out, "Do you want to cancel this surgery? Because I'm coming in on my day off." She sounded like my mother on her worst day. Not wanting an angry woman with a sharp instrument rummaging around in my uterus, I canceled the surgery and started all over again with a different gyn practice and different hospital. In sum, we have to navigate not only our anxiety about serious health issues, but we have to deal with other obstacles, as well.

But this is your health. No one in health care will care as much as you do. I am thinking of you, and wishing you strength and much better outcomes in your next steps.

Jump to this post

Oh my gosh! Thank you for sharing your own experience and for the great suggestion for what I should actually ask my gynecologist.

I've started a simple time-line list with very direct questions so that I'm not babbling when I actually talk to her. Since I'm getting care at Stanford, I am never really sure who is actually going to respond to my queries and not all doctors actually respond to messages sent on the MyHealth app. Early on when I questioned who was actually going to be holding the instruments during my procedure (a Resident or a Board Certified Gynecologist), I was impatiently informed by the scheduler "This is a LEARNING hospital!" as if I should automatically know how things are done. Anyway, I do appreciate your response and wish you good health in the future.

REPLY
Please sign in or register to post a reply.