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Biopsy negative, but still turned out to have cancer?

SusanEliz's picture
SusanEliz
Posts: 50
Joined: Aug 2010

Hi All,

I am a breast cancer survivor (10 years!), but this is my first time on the Unterine board.  I was hoping you could help me with advice-

I am 59 years old, post menopausal.  Six months ago, an ultrasound revealed I had an ovarian cyst.  My GYN told me it should be followed up again in 6 months.  In the mean time, I had moved from NY to NC, and didnt have a new gyn yet, but my PC doctor orderd the 2nd ultrasound.

Well, the cyst is still small but has doubled in size.  What concerned my doctor was that the endometrial lining thickness went from 6.2mm in Sept. (it should be less than 5mm for a post menopausal woman) to now 25.2mm.  That is a common indicator of possible endometrial cancer (anything over 20mm I believe) Mine is now four times the size in 6 months! A endometrial biopsy was recommended.

I took the first gyn that could take me, and she did the biopsy, which came back benign, negative for malignancy.  I was very relieved, but was very unhappy with the GYN, who I felt wasn't listening to me.  She gave me the results the following week that it was negative, and then tried to send me on my merry way- she came in the room, never even sat for a minute, said it was negative for cancer and started to leave!  I said wait a minute, I have a few questions- Is it usual to have a lining this thick at my stage in life? She agreed no, it was actually uncommon.  I askied if she was sure she was able to get the specific mass mentioned on the ultrasound, and she said "well, I did go all the way to the back to get the sample!".  I wasn't implying she did anything wrong, I just wanted to be sure she tested the right spot (that was always critical in the breast biopsys I had).  So I still felt something wasn't right, like we didn't get to the bottom of it, so I said I wanted a D&C to check the whole lining.  She said okay, she would give me a referral to another place because "she wasn't scheduled to be at the hospital for a few months" WHat? But okay fine.  ANd I said in addition, shouldn't I also follow up on the cyst again, as the ultrasound suggested?  SHe answered Yes, you should, but wasn't going to give me a referral unless/until I asked for it.  Shouldn't she have been telling me? Not me getting it off the ultrasound report?  If I hadn't read it myself, she wasn't going to follow up on anything!  

Needless to say, I don't think she ever put in for the D&C referral, she told me I had to wait to hear from them, but I have not.

Meanwhile, my sister-in-law (nurse) tells me she knows someone personally who had a negative biopsy but it came back positive after a whole D&C.   

I spent the whole day looking for a new GYN, because I am definitely not going back to her.  I guess I was just looking for support in continuing to push for answers, and to see if anyone elshe has ever heard of a negative biopsy but still did have cancer?  

Am I crazy for pushing for further evaluation when the GYN thinks everything is done?  I just don't trust her!

Thanks for any thoughts or feedback!

Susan

 

 

oldbeauty
Posts: 320
Joined: May 2012

Susan, good for you for getting in her face a bit.  She clearly is out of her depth.  As a breast cancer survivor, you should follow up exclusively with a gynecological oncologist.  Go to Duke University if your insurance allows; just be sure to use that specific kind of specialist.  If you have insurance that requires a referral to a specialist, take the time to do that.  Others here will tell you that a biopsy is often not a reliable diagnostic procedure; a D&C is what you want, you are correct!!  Come back here for reliable experience-based info and tremendous emotional support. Good luck and best wishes.  Oldbeauty

SusanEliz's picture
SusanEliz
Posts: 50
Joined: Aug 2010

Thank you so much for your reply!  I'm in the Raleigh area so Duke is doable.  Unfortunately, I was not able to get in there yet without a referral, and my doctor won't give me a referral  to a gyn oncologist without having a cancer diagnosis.  But Duke did refer me somewhere related, so I will try that.  It's just not the oncology department yet.  Thanks again for the suggestion; I'm glad to know you have faith in them if I need them!

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

And yes your are right to advocate for yourself.  It is just the way it seems to be now.  You are correct that a endometrial biopsy is not as certain as a D and C.  If you took Tamoxifen, you can also use that as a reason to be more proactive about this, as Tamoxifen use increases the risk of endometrial cancer.  I would try and find another doctor to manage your care.  We have found that some of the women here had doctors who were laissez-faire about post menopausal bleeding, and they ended up with cancer.  On the other hand, 1 in 10 biopsies is positive for endometrial cancer so your chances are good.  You are right though, to make SURE it is negative. Let us know how things turn out.

alicia2020
Posts: 164
Joined: Sep 2020

Susan, I'm so sorry you received that kind of care! You are NOT crazy for pushing for answers & advocating for yourself! My friends are right! To be sure you need a D & C....and see a GYN/ONC if you can. I haven't been around this board for as long as some people, but I know that breast and gynecological cancers can be genetically linked. No need to panic, but you are certainly smart to advocate for yourself. If you click on member's names in the blue boxes it will take you to their "About Me" pages, and you can read their stories. You will see that many of us have had to fight for the best care at one point or another!

There is great support here, so ask us what you need to ask. Let us know how you're doing!

Hugs, Alicia

zsazsa1
Posts: 557
Joined: Oct 2018

You're doing the right thing.  I agree with D&C, but I'm also wondering a bit about the ovarian cyst.

You have to realize that you are asking women who wish that they had had a hysterectomy before their uterine cancer occurred, or metastasized.    I completely agree that you should be seen by a gyn-onc.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2937
Joined: Mar 2013

Susan, as a cancer survivor who have heard what we have all heard, "with your history..." and having had breast cancer it is not uncommon to have gynecologic cancers as well.

Please ask to work with a gynecologic oncologist and RUN, not walk away from that gyn! 

Please let us know how it goes.  

Quilter_1's picture
Quilter_1
Posts: 118
Joined: Mar 2019

Fight for the care that you (we all) deserve.

EZLiving66's picture
EZLiving66
Posts: 1480
Joined: Oct 2015

Your doctor sounds like that nimrod doctor I first saw who told me in her Communist accent, "You get old." Yeah, I was getting old but I just felt something was wrong and she wouldn't even consider it. I made an appointment with another GP who said if I thought there was something wrong, there probably was. The next week the gyno she referred me to did a biopsy and sure enough, it came back as uterine cancer. IF it hadn't come back positive, I would have asked for a D&C because I knew SOMETHING wasn't right! 

You are so smart to advocate for yourself. Many women, I fear, haven't and ended up dying before their time because of incompetent doctors!!

Love,

Eldri

jan9wils's picture
jan9wils
Posts: 173
Joined: Mar 2017

Susan,

Thank goodness you knew to ask questions and demand a D&C.  A GYN oncologist is who you will want to consult. Please let us know your results as we are all pulling for you to be cancer-free.

Jan

SusanEliz's picture
SusanEliz
Posts: 50
Joined: Aug 2010

Thank you all for your replies; they are very appreciated- especially when feeling stressed it is so great to have this board to reach out to!  As seems to be the group consensus as well as my own gut feeling, I will continue to push (nicely but assertively!) until I get answers that make sense.  Hopefully all is fine, but I agree with those who said that breast and gyn cancers can be related, so I will not longer feel like I am overdoing it to get the appropriate answers.  

I did finally get the referral to a gynocologist today that can order the D&C if he agrees it's appropriate.  My appointment with him is on Thursday morning, so hopefully I will get some good news, or if he feels differently, I will get  a reason that makes sense! 

I will keep you posted, thank you again for all who took the time to respond- it's very appreciated!

Susan

 

Thanks again, and 

SF73
Posts: 316
Joined: Oct 2017

Definitely not overdoing it. I am so glad that you are advocating for yourself. I really hope that all is fine at the end. 

SusanEliz's picture
SusanEliz
Posts: 50
Joined: Aug 2010

Thank you!

tundraqueen
Posts: 2
Joined: May 2021

I am 61 and post menopausal about a year ago I stated spotting and having pain in by lower back and abdomen. I got an appointment with a gyn and she had some tests done (vaginal ultrasound and sonogram). It was discovered that I had two fibroids. This gyn decided that I need to have a hysteroscopy done at which she would remove the fibroids and have 4 (snippets) removed and tested. When I woke up from this procedure I was informed that she found a palup and removed it as well as the snippets for testing but she did not remove the fibroids. A weel later my husband and I are in her office and she says "you have cancer. I can't tell you what type or what stage. This is beyond my scope so I will need to send you to a gyn/onoclogist." Now my first questions is, if they did a biopsy how can they not know what type of cancer it is? But any way off to this other doctor I go. Now there is no new testing...I'm getting blood tests and covid tests on Thursday and I'm in surgery on Friday for a "radical hysterectomy".  They remove it all! ovaries, tubes, uterus, cervix and a small part of the vagina along with countless lymph nodes. Two weeks later I show back up to find out the results of the biopsy for my hysterectomy and all is NEGATIVE. NO CANCER. Non anywhere. It's like WOW how lucky can I be. But wait I'm told I still need radiation and chemo. I'm not sure why? There was nothing there. Now this gyn is getting my saples from the hysteroscopy and having her people retest them? I'm not sure what I should do. Has anyone on here had the same thing happen to them. This doctor yelled at me and said if I didn't do these things and the cancer came back I would be dead in 1 to 2 years. Thanks.

MAbound
Posts: 1160
Joined: Jun 2016

You don't say if you have copies of your records from since this whole ordeal for you started. If you don't, I strongly recommend that you collect your records from every test and procedure you've had as well as as the surgical and pathology reports from the hospital where you had your surgery.

What you told us just doesn't make a lot of sense to us either. Gyn oncologists generally to do not take on patients that don't have cancer and I can't imagine one doing a radical hysterectomy without certainty that you have advanced, high grade, or an aggressive type of cancer. I had both a PET scan and an MRI pre-op before my radical hysterectomy so that my gyn oncologist could determine which procedure I would need and how extensive it needed to be. Pre-op pathology identified both type and grade of cancer, though not stage, before I was sent to the gyn oncologist.

Obtaining all of your records should help to answer a lot of questions for you, help you to form the right questions to ask, and make the decisions you have facing you. It's always a good idea to get copies of all of your medical records for your own information and memory as well as the fact that they often come in handy when you go to other doctors in the future. Don't take "no" from anyone while getting them; you have a legal right to a copy of everything.

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

Sorry. you are having to deal with this.   I had something similar happen.  I had a hysteroscopy and then laparoscopic biopsy.  The pathollgy came back as Endometrial intraepithelial neoplasia confined to one polyp.  

I was referred and the new doctor had gynecollogy pathologists look at the slides, and they changed the diagnosis to serous intraepithelial neoplasia.  I had CT scans to check for metasteses before surgery and there were none.  And at my hysterectomy salpingoophorectomy they found no other malignant cells.  I had asked my GO to only remove sentinel nodes if she didn't find anything else.  She did something called nodal mapping, where they inject green dye into the cervix and examine them visually.  She did not take any other nodes.  The final pathology showed no other cancer.  I was given the option of having chemo and radiation.  But for that early stage, obeservation only is an option.   I chose no treatment, as the GO said I could recur even with treatment.  I am almost 3 years out with no recurrence

 

You could ask for a second opinion.  Are you being seen at a large cancer center?  You have described no malignancy in the hysterectomy specimen.  I am also wondering why they did a radical hysterectomy.   And if you have a high grade type cell the "community pathologists" have a hard time making the distinction.  I was surpised to learn that there are gynecological pathologists, and they don't always agree on the diagnosis.  You have not mentioned the grade or type of malignant cells they found.  That would be a good question to ask them.  If you have a high grade cancer, it can come back, even if there was nothing else found in the uterus.  I would get a second opinion if I were you if you are not comfortable with what the decision has been.  Doctors don't mind getting a second opinion.

Sue

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

An article that may pertain to you.   You have to copy and paste to read.   https://pubmed.ncbi.nlm.nih.gov/25517962/

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2937
Joined: Mar 2013

tundraqueen, can you tell us where you are located?  Maybe someone is aware of a gyn onc who can better work with you.  It is hard to do sometimes, but I would ask if it is possible to sit down and have them tell you exactly what type of cancer was found so you can also do some research yourself.  No doctor should be yelling at you, of course you want to do what is in your best interest, you just would like to understand it better. 

 

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