Suspected Endometrial Cancer: Cervix won't open to do biopsy

Posted by debra54 @debra54, Feb 1, 2023

The lining of my uterus is thick so they tried to do a biopsy but my cervix would not open and they mentioned having a hysterocmy but I'm not sure about doing that without knowing if it's cancer or not.

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@jll94

If it helps to know, I took that pill 3x (twice for attempt at biopsy in office) and once under anesthesia and my cervix still wouldn’t dilate. She said I had scar tissue. ? Going next week to talk about next steps.

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@jll94, welcome. I look forward to hearing what alternatives will be offered so that a biopsy can be successfully taken for you. What symptoms led to your needing a biopsy? Does your doctor want to rule out uterine cancer?

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@colleenyoung

@jll94, welcome. I look forward to hearing what alternatives will be offered so that a biopsy can be successfully taken for you. What symptoms led to your needing a biopsy? Does your doctor want to rule out uterine cancer?

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Curious to hear what they suggest with next steps, since they wasn't able to do a biopsy.

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My doctor offered to put me under when the same thing happened to me. I very much preferred this method.

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@jll94

If it helps to know, I took that pill 3x (twice for attempt at biopsy in office) and once under anesthesia and my cervix still wouldn’t dilate. She said I had scar tissue. ? Going next week to talk about next steps.

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I also will be interested in hearing what options you are given.

I bitterly regret not having tried harder to avoid having a D&C with hysteroscopy. Shortly after Thanksgiving I had a CT scan showing that I have extensive metastases in my peritoneum (aka peritoneal carcinomatosis). Before having the D&C with hysteroscopy I had read medical literature suggesting that this procedure was associated with peritoneal spread, but felt like I should trust my doctor. Of course I can't prove that the D&C and hysteroscopy caused my cancer spread, but I think it is a legitimate concern.

I'm really angry, and am planning to do my best to have the use of this procedure minimized in the future, because I believe it is dangerous for some women and that more can be done to avoid it.

My guess is that there should be at least two ways for you to potentially avoid it, not including vaginal misoprostol, which I guess you have already tried. One is that they may be able to do the dilation be then just do to pipelle biopsy (as in the office biopsy), instead of doing the hysteroscopy and the curettage. But what I wish I had really tried fighting for is a liquid biopsy (ie a blood test that looks for tumor DNA in your bloodstream), such as that offered by Grail. This is not standard of care,and I think it's questionable whether the doctors would consider a positive result as acceptable for diagnosis, although I think they should. (These tests are not held in very high regard because they have high rates of false negatives, ie they miss cancers that are present. However they have virtually no false positives, so a positive result should be real.).

I keep getting fund raising emails from the hospital where I'm being (mis)treated, boasting about how they're providing the medicine if the future today. The D&C with hysteroscopy is the medicine of the past, and hopefully the liquid biopsy is the future.

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@val64

I also will be interested in hearing what options you are given.

I bitterly regret not having tried harder to avoid having a D&C with hysteroscopy. Shortly after Thanksgiving I had a CT scan showing that I have extensive metastases in my peritoneum (aka peritoneal carcinomatosis). Before having the D&C with hysteroscopy I had read medical literature suggesting that this procedure was associated with peritoneal spread, but felt like I should trust my doctor. Of course I can't prove that the D&C and hysteroscopy caused my cancer spread, but I think it is a legitimate concern.

I'm really angry, and am planning to do my best to have the use of this procedure minimized in the future, because I believe it is dangerous for some women and that more can be done to avoid it.

My guess is that there should be at least two ways for you to potentially avoid it, not including vaginal misoprostol, which I guess you have already tried. One is that they may be able to do the dilation be then just do to pipelle biopsy (as in the office biopsy), instead of doing the hysteroscopy and the curettage. But what I wish I had really tried fighting for is a liquid biopsy (ie a blood test that looks for tumor DNA in your bloodstream), such as that offered by Grail. This is not standard of care,and I think it's questionable whether the doctors would consider a positive result as acceptable for diagnosis, although I think they should. (These tests are not held in very high regard because they have high rates of false negatives, ie they miss cancers that are present. However they have virtually no false positives, so a positive result should be real.).

I keep getting fund raising emails from the hospital where I'm being (mis)treated, boasting about how they're providing the medicine if the future today. The D&C with hysteroscopy is the medicine of the past, and hopefully the liquid biopsy is the future.

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@val64 Oh, Val, this is very upsetting news. I hadn't seen any posts from you in awhile and as one of our supportive and knowledgeable members I've been wondering about you.

Like you I had a D&C with hysteroscopy and while there was no difficulty accessing my uterus via my cervix I wonder too if this was the "best" approach. I first had an ultrasound that showed thickening endometrial lining and so that necessitated more investigation. I get that part. I trusted my local doctor who chose not to do an endometrial biopsy in the office when he could have accessed the uterus via my cervix as far as I new. When endometrial cancer was diagnosed he told me he was very surprised as he did not think I had the usual risk factors. He didn't ask me enough questions to even know that and I've always been afraid that the D&C with hysteroscopy was what contributed to the recurrence I had two years after the initial hysterectomy.

I have had regular CT scans since the recurrence and I'm scheduled for another set on January 9. I'll come back here and let you and everyone else know the results of my next cancer surveillance appointments.

How can you (or I) help to minimize the D&C with hysteroscopy in the future? How can we push for the methods that you outlined in your post? You wrote that you are angry and I find, at least for me, that anger is a productive emotion. It gets me motivated to accomplish what I need to do.

What is your treatment plan? I am figuring that you will not return to the hospital where you were (mis)treated. As I recall you are in Philadelphia? Is that right? You have many other choices including NYC. What are you thinking you will do?

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@debra54

Curious to hear what they suggest with next steps, since they wasn't able to do a biopsy.

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They jumped to hysterocmy but there has to he a option to rule out cancer

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I’m sorry you are dealing with this stressful uncertainty.

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@naturegirl5

@val64 Oh, Val, this is very upsetting news. I hadn't seen any posts from you in awhile and as one of our supportive and knowledgeable members I've been wondering about you.

Like you I had a D&C with hysteroscopy and while there was no difficulty accessing my uterus via my cervix I wonder too if this was the "best" approach. I first had an ultrasound that showed thickening endometrial lining and so that necessitated more investigation. I get that part. I trusted my local doctor who chose not to do an endometrial biopsy in the office when he could have accessed the uterus via my cervix as far as I new. When endometrial cancer was diagnosed he told me he was very surprised as he did not think I had the usual risk factors. He didn't ask me enough questions to even know that and I've always been afraid that the D&C with hysteroscopy was what contributed to the recurrence I had two years after the initial hysterectomy.

I have had regular CT scans since the recurrence and I'm scheduled for another set on January 9. I'll come back here and let you and everyone else know the results of my next cancer surveillance appointments.

How can you (or I) help to minimize the D&C with hysteroscopy in the future? How can we push for the methods that you outlined in your post? You wrote that you are angry and I find, at least for me, that anger is a productive emotion. It gets me motivated to accomplish what I need to do.

What is your treatment plan? I am figuring that you will not return to the hospital where you were (mis)treated. As I recall you are in Philadelphia? Is that right? You have many other choices including NYC. What are you thinking you will do?

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Thanks for the sympathy, Helen. I said "(mis)treated" because I'm mad and because my treatment has gone poorly, to put it mildly, but I have to acknowledge that my gyn oncologist has pretty much done exactly the job that he is getting paid to do: following the algorithm to provide standard of care treatment. No more, no less. So my problem isn't really with him and his team, it's with the algorithm, which all Drs are basically obligated to follow.

Since I wanted to start treatment ASAP, I am sticking with the same Dr/ hospital. I'm back on 3 week cycles of carboplatin and paclitaxel, but with the immune checkpoint inhibitor Keytruda (pembrolizumab) added too.

I'll let you know if you can help with my campaign against D&Cs /hysteroscopy. I need to slip back into logical scientist mode and read all the literature on this to figure out where the data came from.

Hoping your scan goes well.

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