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.

Get a second opinion. My first doctor did not even examine me and told me to return if I had more bleeding. I ended up getting the biopsy in her office something I would not recommend, the biopsy came back that I had uterine cancer in 2009. Hysterectomy followed. We were in Texas at the time but we moved to California. For my follow up I saw 4 doctors before I found a doctor who would use a speculum, at that time the doctor said she would use one but would be surprised if I had recurrence since there is only a 1% chance. Guess what I did. Radiation followed.
My point is don’t let any doctor be so vague this is your life and as much as terrifying as it is you have to be proactive. Good Luck.

REPLY
@tclare15

Thankyou for that very comforting message! I expect that my appointment on the morning of Feb. 7th will be just a sit down consultation. There probably won't be an examination at that appointment, but I don't know for sure. We will go over what the ultrasound actually showed, what was done, and what needs to be done.

Jump to this post

@tclare15 I didn’t have a physical examination at my first consult either. The surgeon went over what had already been done including the pathology from my D&
C with hysteroscopy and we talked about what to do next.

I’m so happy for you that you are getting that second opinion and got in to Stanford so quickly for your appointment.

REPLY
@jeanadair123

Get a second opinion. My first doctor did not even examine me and told me to return if I had more bleeding. I ended up getting the biopsy in her office something I would not recommend, the biopsy came back that I had uterine cancer in 2009. Hysterectomy followed. We were in Texas at the time but we moved to California. For my follow up I saw 4 doctors before I found a doctor who would use a speculum, at that time the doctor said she would use one but would be surprised if I had recurrence since there is only a 1% chance. Guess what I did. Radiation followed.
My point is don’t let any doctor be so vague this is your life and as much as terrifying as it is you have to be proactive. Good Luck.

Jump to this post

Your story further strengthens my resolve to be clear about NOT being a "wait and see" patient. A doctor's vague dismissal as being only a 1% chance of having cancer is nothing to her, but everything to me. I'm going for 0% chance.

REPLY
@tclare15

Your story further strengthens my resolve to be clear about NOT being a "wait and see" patient. A doctor's vague dismissal as being only a 1% chance of having cancer is nothing to her, but everything to me. I'm going for 0% chance.

Jump to this post

It’s sad when we have to rely on ourselves, I quite honestly find it exhausting since myself and my husband have both had cancer three times each. I had severe bleeding in my rectum from the radiation and just when I thought all was good I might have radiation proctitus from the radiation since I now have bleeding again. My gastroenterologist who is fabulous has made me an appointment to see a proctologist so we will see how that goes. Just when you think all is good. 😁

REPLY

Sis be thankful that there wasn’t enough tissue. Unfortunately, I did have enough tissue for a biopsy 13 months post surgery and have experienced bleeding.
If a CT scan is not done, not enough tissue to biopsy, be thankful and continue to be monitored by your Doctor. Begin a new diet eating all foods which fights cancer, exercise and be your best health care provider! Self care!

REPLY
@naturegirl5

@tclare15 Would you let me know what happens with an appointment with a different gynecologist? Just another suggestion too. I know from friends and family in the Bay Area that it can take months to get in with a new provider. Well, that seems to be true most everywhere now. Would your primary care provider help by providing you with a referral once you establish where you would like to go? That’s how my brother got in so quickly with Stanford.

Jump to this post

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!

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

It sounds like you got a lot accomplished and you seem to be satisfied so far. The doctor sounds attentive and appropriate with addressing your concerns. I have no experience with this type of thing, but I hope those who are will chime in.

I have done scary things to myself reading all kinds of things on-line. I try to avoid, but I know it’s difficult. Hopefully, things will continue to go smoothly. Sending positive thoughts and well wishes.

REPLY

My remaining concern is that as great of a reputation as Stanford has, I realized that it is a teaching hospital and the surgeon will have a resident assisting her. I will need to confirm exactly what "assisting" means in this case.

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

Hello as much as you can please try not to google fir info. Write your questions down and most physicians now have a patient portal so you can ask questions in between visits I made the mistake of searching early on and only resulted in needless worry about things I’d read that didn’t pertain to my diagnosis. Since then I have two sites I use and then come to every appointment with my questions written down. Take care

REPLY
@aardvark2118

Hello as much as you can please try not to google fir info. Write your questions down and most physicians now have a patient portal so you can ask questions in between visits I made the mistake of searching early on and only resulted in needless worry about things I’d read that didn’t pertain to my diagnosis. Since then I have two sites I use and then come to every appointment with my questions written down. Take care

Jump to this post

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.

REPLY
Please sign in or register to post a reply.