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Worried- thickened endometrium with bleeding

Ag123
Posts: 52
Joined: Mar 2017

Hello, 

Hope everyone is well and staying safe. 

 

I'm writing here to see if I can hear any experience or opinions that are similar to my mom's thickened endometrium and postmenopausal bleeding. 

A little background: She's about 65 y/o. In october 2019 she had some spotting so we did an ultrasound which showed thin endometrium (I didn't ask for measurment but "thin" is I got from the her gyncologist). However, she saw tiny bit of fluid and wanted to biopsy to make sure (she said wasn't it wasn't urgent). My mom does a lot of traveling so that happened and we delay the biopsy. Then coronavirus happened. A few months back she had another spotting,  So here we are one year later basically investigating the same thing. Except the result this time is worry-some. Her ultrasound report showed thickened endometrium (around 8 mm). We tried to biopsy but wasn't able to because it was painful (probably stenosis?). Her gyncologist didn't seem very positive about the thickness and said she must do D/C to biopsy it now. I asked if what happens if they found something and she mentioned hysterectomy. My mind went to dark places after that. 

 

It's kind of devestating because my dad has stage IV cancer and I honestly don't know how I'm going to deal with anxiety of another cancer now. 

 

If it is cancer/pre-cancer, I guess it helps to think at least there's a chance it hasen't speard around. But that rate of that thickenning seems alarming to me. Frown  

 

And if it's worse-case scnario, maybe thinking of good survival rates and survivorship stories might help ease my mind a little bit. 

 

Thanks <3

 

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Biopsies are normal.   And most new cancers are endometrioid garden variety.  And most of those are early stage.  So chances are she will be ok. BUT do get the biopsy done as soon as possible.  And maybe she could have a hysterectomy so she doesn't have to worry about this anymore if the biopsies are ok.   The other risk factors for endometrail cancer is not being pregnant, older age, use of estrogen without progesterone, obesity, sedentary lifestyle, and type II diabetes.  It is scary to think about but her chances are good.  

Ag123
Posts: 52
Joined: Mar 2017

Hi Forherself. Thank you for the reply! She has a couple risk factors based on this. Also, I'm not sure if genetics play a role but two of my aunts and a cousin had abnormal growth and one had a hysterecmy just in case. 

She's going to do the biopsy as soon as she gets everything checked (she has a heart condition).

I keep reading the ultrasound scan hoping to find something new. But it's gibberish. All I understood is existence of fibroids (which are probably old b/c we were told about that last year), the increased endo thickness and "increased vascularity" (the last of which sent me on a panick attack... but after doing some search i found out polys and other growths have increased vascularity as well. I even looked at the RI and PI values and they appear to favor benign pathologies vs malignancies according to studies I looked at.. but who knows!).

 

It's gonna be a tough few weeks. But I'll try to remind myself of that biopsy statistics you mentioned.

 

Thanks again <3

 

 

zsazsa1
Posts: 557
Joined: Oct 2018

A lot of women come on this board seeking reassurance as they go through biopsies for post menopausal bleeding, and thickened endometrium.  And most of them wind up not having cancer.  But many of us who do, had initial symptoms dismissed, and had missed diagnoses.  So, to reassure you, your mom probably doesn't have cancer, and even if, God forbid, she does, it's probably an early stage very treatable cancer, usually cured by hysterectomy.

That being said, after my own dismissed symptoms, and knowing that 1/20 women will have a GYN malignancy, I am now strongly in favor of post-menopausal hysterectomy if there is the slightest indication for it.  So, if she were my mother, I'd be lobbying for a laparascopic transvaginal total hysterectomy, rather than a biopsy.  But my view has certainly been colored by my own unfortunate experience.

Ag123
Posts: 52
Joined: Mar 2017

Hi Zsazsa1, 

Thank you for the feedback and the information.

I didn't even think I'll get any reply frankly since the board looks slow. I really appreciate your input, ANY human input lol, you've no idea. Having one parent diagnosed with cancer and another going through all of this, I guess I can strangely understand "survivor guilt". If my mom ends up having cancer, it's going to be inspiring to gain stength from others' experience who have lived through it. And if she ends up being cancer-free, I will still be thankful to have visited this board and for your input given that I'm going through such diffcult time. It just feels like I have massive amount of information to learn and decisions to make. So I appreciate it either way.  

I actually just looked up laplaparoscopic transvaginal total hysterectomy. I'll bring it up in her next appointment. 

Excuse my absolute lack of knowledge on this, but it sounds like you already had this type of hysterectomy? I'm curious did you experience any issues or complications?  

 

PS: I keep thinking about lack of persistence to get it checked it sooner. It sucks. But here we are. I'm not sure how fast this grows. At least I pushed her to do the tests now since she's been quarantining like a pro since march lol.

 

EDIT: I just clicked on your profile and read your bio. What a powerful story. I'm so glad you didn't ignore the continued signs and are doing fine now!  

alicia2020
Posts: 162
Joined: Sep 2020

I'm sure by now you've probably read through a lot of threads and"About Me" posts on this board. There are many, many women lovely ladies here ready to help! I'm a newbie here, but already feel loved and supported by them! What a blessing they are!

As to your mother, I'm guessing they are going to do a hysteroscopy. I hope it goes well! I didn't know until they tried it with me, but there is such a thing as a "failed hysteroscopy." So, general anesthesia and a whole day at the hospital to wake up and be told, "He didn't do it." WHAT??? GYN said he couldn't get a sample (which is not true, because he did send something to the lab), and because my cervix was completely uncooperative (I was never able to have children), so he shut it down because he "didn't want to hurt me." I'm just telling you this because you mentioned stenosis in your original post. I had my hysterectomy the following week.

My first surgery was a "robotic laparoscopically assisted vaginal hysterectomy." I did very well, was able to come home afterward, and recovered easily. He didn't take any lymph nodes because he was so sure that I didn't have and he didn't'see" any cancer. He was very wrong.

i wish you and your parents weren't having to go through this! You're very smart to have joined this board....I sure wish I had before I let that regular GYN touch me. 
Love and prayers to all on this board!

Alicia

Ag123
Posts: 52
Joined: Mar 2017

Hi Alicia, thanks so much for this note! I read your bio and learned a lot from it and all the other ladies as well. I actually read this comment before the appointment today and mentioned the what you have experienced to her new gyncologist. I would rather not have her do extra procedures unnecesairly if she has stenosis. Her gynocologist said this can happen but she seemsed to favor doing D/C& hysterscopy as her first step. (As a new doctor.. She honestly seemed pretty... genertic to me)

 

Ag123
Posts: 52
Joined: Mar 2017

So I did switch facilities entirely because I trust this new place more (I based my selection on the oncology specialists who works there who seemed amazing. I TRULY appreciate reading stories here indicating that it's best to seek an onc/gynecologist because that's what puyshed me to do it). Initially though of course the only person we could see is their regular gynecologist until something is confirmed so I had to BEG their oncology department to set up an appointment earlier than January and somehow I ended up getting her a spot in two weeks... phew! 

It's going to be a long couple of weeks. But for now at least we'll take what we can get. The regular gynecologist I guess can do anything she thinks is needed until maybe hysterectmy which I'd rather have it done by an oncology specialist if possible. At least that's is how I have it sorted out in my head.

 

So we saw the new gynecologist today. I don't know how I felt about her. Very sweet human being but she just didn't seem confident in what she's going. She only has 5 years of experience which isn't a lot. I am trying to stay open though and not project my own uncertainties on her because i know anyone in her position would feel uncertain. None of us know what we're working with. 

I printed the ultrasound report/images for her to see. Overall, she mentioned it could be benign like a polyp but they need to see with hysterscope. I also mentioned the "increased vascularity" comment made in the report and she said that it CAN be from a polyp or something benign but vascularity usually is an indication of malignancy or something serious. Frown 

My heart dropped when she said that because i was hoping she'd say something good. And it just felt robotic as a comment. I mean STILL she couldn't even see the images in COLORS to appreciate vascularity part/color score b/c my printer is only in black/white lol. And I've been reading studies like a maniac and I think the vascularity pattern that light up with colors is supposed to matter (single vessel versus multiple versus scattered.. in addition to those colors).. I'm kind of frustraited. 

 

The ONLY positive comments I got from her was that it's usually a slow growing cancer if anything (again... felt generic). And that according to the US images I printed out she couldn't see any invasion on the myometrium (or something) so she said IF it is cancer then we may have just caught it early.

 

That's the ONLY comment I got from her that felt confident... Or maybe it's my positive bias? lol.

 

Molly110
Posts: 192
Joined: Oct 2019

Myometrial invasion refers to whether and to what extent endometrial cancer has invaded the myometrium, which is the layer of the uterine wall next to the endometrium. It's a really good thing when cancer -- if it is cancer -- hasn't invaded the myometrium or when the invasion is less than 50%. (That's my very lay-person understanding, but I'm positive that no invasion is a very good thing.) I know how frustrating and frightening it is to have to wait, but until the tests are done, I guess there isn't much she can tell you beyond the generic.

Take care.

Ag123
Posts: 52
Joined: Mar 2017

Exactly. I feel the same way. Based on this, if it's cancer then it's probably/hopefully just an early stage (stage I) type of situation perhaps.

 

And I guess that one comment felt genuine because she actually had to look at the picture herself to estimate the invasion (as opposed to read what report said). 

 

 

 

alicia2020
Posts: 162
Joined: Sep 2020

Im so glad you have read our stories because if nothing else, it helps you know some of the best questions to ask! It's pitiful that we have to fight for the best care, but it seems like in health care the person screaming the loudest actually does get ahead! I'm so glad that you got an appointment with a GYN/ONC!

We all know about the excruciating waiting! Wait.Wait.Wait. But, we're here to support you!

Hugs to All!

Alicia

 

Ag123
Posts: 52
Joined: Mar 2017

I totally agree that the person who demands it the loudest will get ahead. Unfortunatley, this is why I had her switch facilities in the first place. I figured thinking of the the worst case scnario and having an onc/gyn on the side is the only method to be prepared for whatever comes next. 

 

Thank you! <3

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

And, even if it is cancer, the treatments just keep getting better and better! In many cases, it's treated as a chronic disease like T2 diabetes. 

But as the ladies on here have reiterated, MOST uterine cancers are easily cured with surgery. Good luck to your mom - she's lucky to have you as her advocate!

Love,

Eldri

Ag123
Posts: 52
Joined: Mar 2017

I just took a quick look at your bio and blog. The communist accent... I can't!

It's really interesting and inspiring that you think of it as just diabates as you continue to live your life plus the check-ups practically! :)

I guess it's the anxiety that's getting the best of me honestly. I fear that if we miss something or delay the process it'll be stage IV. My dad had a whole different type of cancer (we noticed he had an inflammed lymph and the next thing it was stage IVB). I also fear for the procedure and general anasthesia (my mom has a heart condition). But the more I read stories like yours the more I realize there are a lot of women who have made it through just fine thank God it's not going to be the end of the world if it's cancer!

cmb's picture
cmb
Posts: 731
Joined: Jan 2018

Most of us have found that the period before we can have surgery is an anxious time. Once the surgery is done, however, it's easier to deal with because now proactive steps are being taken.

I know this is already a difficult time because of your father's cancer, but as others have commented, most uterine cancers are the common type and often curable with just surgery.

I'm sure your mother is very happy that you're able to help her secure the right mix of doctors and services at this time.

Ag123
Posts: 52
Joined: Mar 2017

Thank you. It's true. It looks like uterine cancer (for the most part) is slow growing and it seems to be treated very effectively with the surgery... if anything. 

 

Thank you so much. 

Ag123
Posts: 52
Joined: Mar 2017

Hi everyone, 

So today my mom did the D/C and hysteroscopy. It lasted 5 hours for some reason and we were waiting outside worried sick. Her gynocologist called me to tell me that what she saw looks more benign to her. We're waiting on pathology now. But it that was SUCH a relief to hear!

 

I wanna thank you ALL so much for all your support. It's been a very tough few weeks for us (especially given my dad going through his own complications and stuff these days). I just really thought we couldn't handle a parralel set of challanges, but you ladies gave me so much hope and inspiration to work with! I would think negatively for one second and the next second I'd even tell my mom "Look there are some ladies that made it despite 16% chance of survival on google search!"... It gave us all the strength.

 

As a defensive pessimist lol, I spent some scary moments and contemplated worst cases (not only diangosis, but stage IV, recurrences, failed treatments) BUT I realized that EVEN then there was hope as I kept reading latest journals and read some inspiring stories in this board. 

Still have the oncology team on the side just in case the pathology comes back concerning or if she needs to do hysterectmy.

 

Thanks again ladies <3

ConnieSW
Posts: 1576
Joined: Jun 2012

I am so happy that it appears you will have a positive outcome.  Also, keep in mind that your experience will be part of the record here that will help frightened ladies in the future.  Thank you.

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