I have very recently had an abnormal ultrasound of my uterus. I am trying to stay calm but I like to get as much information and advice as possible. So here it goes. Went to doctor for something totally unrelated and just happened to mention how my monthly cycles have been lasting longer than normal. I thought that I may be that time of season for me since I am 46. Body changing and all that jazz. I had my last ultrasound in August of 2021. Everything was normal. She put in new ultrasound and blood work. Blood work came back normal. All hormone levels are fine so it must be in my head right? Ultrasound came back and because of how things are nowadays I get the results before my doctor. I read them and knew something was wrong.
Initially, transbladder ultrasound performed.
Uterus measures 10.0 × 4.6 × 5.3 cm. Endometrial thickness 7 mm. Right ovary measures 4.2 × 3.3 cm. Left ovary measures 2.5 cm.
To better visualize the adnexa and uterus, endovaginal ultrasound was performed.
Uterus measures 10.0 × 4.8 cm. Endometrium is thickened and irregular particularly in the fundus where it measures 16 mm in thickness and 3.3 cm in length. More normal-appearing endometrium in the remainder of the uterus.
There is nodularity in the endometrium, measures 5 mm as well. Very little normal-appearing endometrium noted.
Right ovary normal size and echotexture and measures 2.6
× 2.3 cm. Simple cyst 1.5 cm. Normal vascular flow.
Left ovary normal size and echotexture and measures 3.4 cm. Normal vascular flow
No significant free pelvic fluid. Remainder of the exam negative.
Markedly abnormal appearance to the endometrium.
Highly concerning for primary neoplasm. Recommend tissue biopsy.
I expected a phone when everyone would be back in the office on Monday. My doctor called me bright and early Sunday morning. That itself tells me not only do I have a great doctor staying on top of things, but I should be just a little bit worried. now I understand I do not have any type of official diagnosis. She did put a referral in to a doctor in oncology. She marked urgent. I am expecting someone to get a hold of me within the next few days.
If anybody can give me interpretations on this based on there own experience or any advice be greatly appreciated. Any questions I should be asking the doctor? Any type of testing I should be making sure the do over other tests?
Thank you in advance for time and input. I am just the type of person that likes to get as much information I can. No matter what way it goes.
The ultrasounds are just a window into what might be going on. It is where many of us begin. If the ultrasound has found something important they will want to do a biopsy. This is where there are different interpretations of what type of biopsy is needed. A biopsy performed in the office can be painful and inadequate because it only samples blindly what the doctor is looking for. The alternative is a hysteroscopy, which is similar to a colonoscopy where you are sedated and the doctor uses a lighted camera to see areas to sample.
You can find in our fax and other posts descriptions of both.
If they decide you need a biopsy, the results will determine if you have cancer and what type it is.
On the bright side, you are young and most things of this nature are not cancer but it is not unheard of in someone of your age. Best to be proactive and be sure of what you are dealing with. I know that the waiting is the hardest part, hopefully they won't find anything.
Let us know what your next steps are, we are here for you.
Forherself Member Posts: 838 Member
Welcome Tink32. It sounds like you have doctors that are doing everything right. Having your biopsy done by a gyne oncologist is great. I suspect they will do a very thorough job with the biopsy. My biopsy was done under general anesthetic by laparoscope as I guess he wanted to look at my ovaries. They were ok. Waiting is very hard. Keep busy. And good luck.2
NoTimeForCancer Member Posts: 3,167 Member
Nothing to add that BluebirdOne and Forherself haven't so expertly said.1
Hi Tink32, it does sound like your doctor is on top of things, which is reassuring. I'm glad that you were able to get in to see the gyn-onc quickly.
I'm not a real big fan of ultrasounds based on my own experience before diagnosis. But as Denise said above, they are where many of us begin. My ultrasound found a "probable fibroid." However, I was later diagnosed by biopsy with endometrial cancer. When I had my surgery, my gyn-onc said I had no fibroid whatsoever, but what was showing on the ultrasound actually turned out to be the major site of my cancer.
I hope your results are just the opposite of mine and that whatever might be going on in your uterus ends up being totally benign.0
OK, so this is what’s going on. When I saw the oncologist for the consultation, I got totally thrown when he wanted to do a biopsy. I did not think I would get one so quickly since I was on my cycle. It was a lot like your here, I’m here, Why not let’s get this done. He did feel what he thought might be a fibroid. After he was done asking all of his questions about me and my life I went to the consulting room. He brought up my ultrasound from a year and a half ago to compare to my current one. Year and a half ago I had a very boring ultrasound. There are a lot of changes from then to now. He believes we were seeing some pulps and some other abnormalities that may not be too concerning. But the one thing that was throwing him off and the ultrasound guy was the mass in my uterus. Looks like it might be attached to the endometrium and has blood flow. So apparently, there’s some kind of freakish circus going on inside my uterus. I did notice. He was very careful about his wording and wanted to stick with. Let’s see what the biopsy brings back. He did say even if the biopsy comes back negative, he would want to do a D & C and scope. The biopsy that he did do. He says it was a blind biopsy and he knows he did not get all the way to the back part of the uterus. He said my results will take a week to get back and then he wanted to see me in 1 to 2 weeks. But the ladies upfront said he does not know his schedule and I cannot get seen for a month. I have a feeling with how quickly things have moved that if my results come back concerning he would get me back in sooner.0
I know I just posted but the Internet is not my friend right now. I’m trying to gather all the information in my head when my results come back and talk with the doctor. But I have a question for anyone who may have had something similar on their ultrasound. Not only was my endometrium weirdly shaped but there is a mass that is 5 mm. Now looking stuff up online, I noticed that endometrium tumors are in the lining and tend to go inward. The mass that I have is outside of the endometrium. We got up close to it on the screen and it looks like it may be attached to the endometrium. It does have a blood flow. He says some times a tumor can have blood flow but I got the impression it’s not the norm. Again I was really thrown by having the biopsy done and everything moving so quickly that most of my knowledge went out the window. But I was trying to ask whether or not the mass was in the muscle, but could not find my wording. It is a problem that I have and am seeing a neurologist for next week. He did say that the mass was still in my uterus. Things that I have been reading tells mean that a mass outside of that endometrium is not really a good thing. Anyone with knowledge of this and what possible treatments I could be looking at? I already expect that I may need a hysterectomy. Both my grandmother and my great grandmother, on my mother side, had hysterectomies around my age. But as far as I know, and anybody else, it was not due to cancer but to bleeding and pain. They may have had their hysterectomies before anything progressed further. That is my thinking anyway. I do realize I have been truly blessed. I have not only a great primary doctor who called the oncologist on a Sunday but I believe an oncologist who’s not playing any games. I seem to be just like everybody else with the waiting game, and then not knowing beginning to get to me. Especially after really seeing the ultrasound. My daughter asked me why I didn’t take pictures. I do not know, I guess shock because I take pictures of everything. All the x-rays of my kids and even animals to show what’s going on, but when it came to me, I totally went blank. I was at the consultation alone since it was such short notice and I think because of that he may have been a little extra careful with what he said. Correction I know he was being careful and cautious. I did ask him how slow is slow moving since that is what I’ve been reading about these type of cancers. I mean I had a normal ultrasound a year and a half ago, so how slow is slow? He could not answer, but I don’t think he really like the fact that I have been having my bleeding issues for at least six months. So any true knowledge out there I would appreciate it . Please Try talking me off the ledge while I wait for my results which he says will be back in a week. Bad thing is I will see them before I even get to talk to him about them. So depending on how the read I could get freaked out even more. I’m trying to be strong and hide any true emotions to my family but I’m really scared. And I’m not sure who to talk to you about this. Although I do see my Talk therapist on Thursday, so it’s gonna be an emotional hour.1
Forherself Member Posts: 838 Member
Good Morning Tink. You are in a VERY hard time. Waiting is the worst. I looked up how big 5mm is and it is the size of a pea. I don't know if you had a hysteroscopy and the gyneoncologist. looked inside your uterus. I have not read of anyone else having an irregular endometrium. If you had an US before, were they watching you for something? I am really impressed by the speed of your care. I had to wait 3 months for a biopsy. You should not have to wait long for the results.
I had a polyp, and fibroids which are described as masses. My uterus was oddly shaped because of the fibroids. Do you have fibroids? My polyp had cancer cells confined to it, and there was no more cancer anywhere at hysterectomy.
And the other thing is IF it is cancer it is most likely endometrioid type. And most often that is early stage. And most often that does not require any further treatment beyond surgery.
Trying to hide. your emotions is so hard. I was kind of like that too. This is a great place to share your fears and emotions. We have all been there.
I had polyps and fibroids filling my uterus which they identified at ultrasound. Plus, later they found two small tumors upon hysterectomy pathology. One of my polyps had cancer. I also had a small lesion in the endometrium. These things are not uncommon. What matters most is the results of the biopsy; whether you actually have cancer, what type. If they find cancer, you will have a hysterectomy, BSO. No cancer, you will probably just be closely monitored, if there is cancer the pathologist will determine the type, grade and stage. To try and ease your mind, most issues are not cancer and if it is cancer, it will most likely be endometrioid, the most common type. If you are Stage 1, which most are, you won't need any more treatment beyond the hysterectomy. The odds are in your favor!
I also want you to be aware that if you are diagnosed with cancer that there is a small chance, about 10%, that is is Uterine Serous Carcinoma, Uterine Sarcoma, Clear Cell or a combination. (I was dx with Uterine Serous Carcinoma, stage 1a, treatment was hysterectomy, BSO, partial omentectomy, chemo and brachytherapy, I am happily almost 5 years out and hopefully, cured) The only reason I tell you this is that my incompetent gyne never told me about the High Grade cancers, only that if I had cancer it would be cured by hysterectomy, no chemo or radiation would be necessary. How wrong he was as I did have a high grade serous carcinoma, and I was devastated beyond belief because he did not prepare me for what that was and what it might entail. All of us dx are on a huge learning curve, trying to understand the terminology and what things actually mean, so I had no reason to investigate that there actually was a worse outcome for me.
We totally get where you are and how you are feeling because we were there ourselves. We understand how you are feeling. What I want to leave you with is that the odds are on your side, but there is a small chance that it might be more serious. Regardless, we are here for you, to support you, to answer your questions as best as possible.
Hi - I just had the hysterectomy 6 days ago - everything moved fast when we realized we were dealing with cancer - I’m waiting now to find out what stage and what’s next - I remember my biopsy / also in the office - so fast - it hurt then a call 3 days later - my only symptom irregular bleeding / they kept saying hormonal and good pap and good colposcopy but the clots I passed initiated the biopsy and now here I am 5 weeks later post surgery she again more waiting but you are NOT alone and this is a very curable cancer- you will be emotional and it’s ok - your family will be there to support you - I know it’s hard as moms - we want to help and support everyone else but right now we need help - you will get through this together0
You are where so many of us still here on the board have experienced. You are lucky to be able to get the hysterectomy so fast as many of us wait forever for a biopsy/hysteroscopy and then if positive, surgery. The most important gage of what is going to happen going forward is the results of your hysterectomy, the pathology. Many times we are upgraded or downgraded because they have much more information after the uterus and other tissues have been examined. The most important information you will be looking for is type, grade, and stage. Type 1 is estrogen dependent, endometrioid. Type 2 is non-estrogen dependent serous, clear cell or sarcoma. Grade, I am familiar with Grade 1, 2 or 3. Stage determines how far the cancer has spread. My dx was Type 2, serous, Grade 3, stage 1a. You can familiarize yourself with our faqs. For me, it meant that my carcinoma was aggressive, non-estrogen dependent but luckily stage 1a.
They will also do molecular testing of your cancer. This will tell them how to treat it, I had a p53 mutation (very common for serous) but they will tell you what the outcome will be. Also, they will determine if your tumor is Her positive or negative. I was Her negative, more common with non-estrogen dependent tumors. Also you probably will be checked for Lynch disease. It is all very confusing for a newbie, but quite logical when broken down. I saw on another post you were concerned because they took your ovaries. In this type of surgery after a dx of cancer, that is what is routinely done. Ovaries and tubes are removed, as they have discovered that many ovarian cancers start in the tubes. It sounds to me that you are receiving routine care, but they did not prepare you for what was to come, which is also not uncommon. The main thing I want you to understand is that all of this is very hard to bear, the hardest thing you might have encountered in life, but in order to be treated, you have to put one foot in front of the other and go with the flow. I am 5 years from standing in your shoes. Not knowing, not understanding, searching for answers, frustrated by the delays.
So, we are here for you, we have been where you are today and we understand in a way no one else can. Your story is not uncommon or unusual. So keep us informed, let us know how you are doing.
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