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Adenocarcinoma diagnosis

Started by boldotter96 · · 👁 3 views · 17 replies

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Participants boldotter96Lawrence Wellsstormymaker24Angela Wrightrestlessharbor5Melissa Thompson45Megan Young13Rebecca Vaughn7
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#1 ·
I've been fighting this battle against infertility for seven years now. We have gone through every single test imaginable. Just before my doctor was set to perform the egg retrieval, she suggested a hysteroscopy because she wasn't happy with how my endometrial lining looked. I had the procedure done at the end of October, and it turns out my uterus was riddled with polyps. They cleared everything out and performed a full revision of the uterine cavity. And then—total shock.
Pathology report: Adenocarcinoma, mucinous type, G1 NG2.
The doctor is absolutely stunned; she’s sending my pathology out for an expert review because she says what she found is just unheard of in a case like mine. If the findings are confirmed, I'll be heading into a hysterectomy.
I am 36 years old and have never experienced a pregnancy or a miscarriage. My BMI is within the normal range, and I don't deal with diabetes or high blood pressure. I haven't used any hormonal contraceptives, and I haven't had any abnormal bleeding or pelvic pain. My cycles are regular, so all things considered, I wouldn't consider myself part of a high-risk group. Not to mention that I undergo Pap smears, swabs, and various checkups with different doctors at least three times a year, and nothing has ever indicated an issue. Everything has been perfectly fine.
It’s painfully clear that having children isn't even a thought in my mind anymore... I am absolutely terrified for my own life. My doctor put it bluntly: right now, the only priority is saving your own head, however much that's possible.
The expert pathology review confirmed the HP findings, though they’ve updated the grading from NG2 to NG1. The report describes fragments of well-differentiated mucinous adenocarcinoma with low nuclear atypia, showing no definitive signs of invasion into blood vessels or lymphatic channels. There are also endometrial fragments present, showing signs of atypical complex hyperplasia along with some areas of benign squamous metaplasia. PHDG- ADENOCARCINOMA MUCINOCUM ENDOMETRII G1, NG1.

Over the last seven days, following my doctor's orders after she performed my hysteroscopy, I have completed the following tests.

The clinical presentation and complete biochemical profile are both entirely within normal limits.
The breast ultrasound came back completely clear.
The liver ultrasound came back looking great. All clear.
The abdominal and pelvic CT scan came back clear—no changes or abnormalities detected.
Chest X-ray came back clear.
My CA 125 tumor marker came back at 8, which is well within the normal range of 35.
The gynecological ultrasound came back completely normal. My doctor was actually stunned by my diagnosis, since she said my uterus, endometrium, and ovaries all look absolutely perfect on the scan.

After reviewing all my test results, I met with the medical board. Following a thorough gynecological exam and a full review of my records, the multidisciplinary team reached the following conclusion:

Clinical Diagnosis: Adenocarcinoma of the uterine corpus, FIGO Stage I.
The decision has been made—it's going to be a classic hysterectomy along with an appendectomy.
I’m currently coordinating my upcoming surgery with my doctor, and I have an appointment with her this Tuesday. Honestly, Tuesday feels like it's a lifetime away. She was very firm about keeping my ovaries and only removing the uterus, telling me—and I quote—that they will be more beneficial to me in the long run should any health issues arise later on. To be honest, I’m completely torn. Part of me thinks it might be better to just have everything removed; what's the point of worrying about long-term health when I'm already dealing with cancer? I feel like I would just feel more secure if everything were gone, though I know how uncertain things are right now. I'm also dreading the possibility of radiation, even though none of my doctors have definitively confirmed that it will be necessary yet. Everything really hinges on the HP results following the hysterectomy.

It's hard to put my finger on how I’m feeling right now. I'm facing the reality of being completely stripped of my chance at motherhood, all while battling a cancer diagnosis with an uncertain prognosis. Everything I read online feels like a rollercoaster—one minute it's absolutely terrifying, and the next, it's slightly more manageable. Honestly, I'm just oscillating between pure fury and total fear.
I've been bouncing from one gynecologist to another for years, trying to get to the bottom of my infertility issues. Over the last two years alone, I’ve undergone five colposcopies and Pap smears, along with countless ultrasounds. Everything comes back perfectly normal—everything looks fine on paper. But then, just as I was finally preparing for IVF... poof. 👎
I am absolutely terrified. Does anyone here have any information regarding this?
Am I in the wrong place? I might have intended to post this in the oncology subforum instead. Please let me know where I should be.
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#2 ·
Look, please just take a breath. I read everything you wrote. First off—your tumor is Figo 1. That means it’s absolutely curable through surgery. Plus, it’s well-differentiated, which is huge—it means the prognosis is way better than those poorly differentiated ones. And honestly? The fact that they want to save your ovaries is such a win. You're still so young, and the last thing you need is to be forced onto hormone replacement therapy because everything was taken out. It would be a total nightmare. Quick question though—has anyone in your family dealt with uterine cancer before?
stormymaker24 stormymaker24 Active Member
98 messages
joined Sep 2008
#3 ·
To find some support in navigating this situation, it might be more beneficial to reach out here

I am profoundly sorry for everything you are enduring right now, but as Michelle Cook83 pointed out—you absolutely must find a way to calm your nerves first. I realize how nearly impossible that feels when the entire weight of the world seems to have collapsed onto your shoulders all at once, yet maintaining your composure is the single most vital thing you can do for yourself at this moment; once you achieve that, your entire perspective will shift.

I shall refrain from offering further commentary since I lack any firsthand experience in this particular arena, but please know that I am wishing you nothing but strength in the battles ahead. You simply must maintain unwavering confidence in yourself and in your doctors.

🙂
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#4 ·
Thank you all for the support...

Nick, honestly, nobody in my family has dealt with this. Both of my grandmothers passed away in their late eighties—one from heart failure and the other just from old age. My grandfathers were the same. My parents have been healthy so far, though my dad deals with high blood pressure a bit, as does my maternal aunt. The rest of my relatives are all men🙂 and have stayed healthy up to this point.

It’s all so baffling. My doctor was puzzled by my results, and my gynecologist was completely stunned and at a loss. Even during the tumor board meeting, everyone was in disbelief. Thirty-six years??? No children??? You can imagine how I felt. I just fell apart, and I haven't been able to pull myself together since...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#5 ·
Look, Michelle Cook83 already laid it all out for you. Your tumor was caught right at the beginning. If I remember correctly, a Pap smear doesn't pick up these specific changes; it mostly just screens the cervix. I know you’re totally reeling right now, but please, try to pull yourself together. Don't go spiraling into some guilt trip thinking you did something wrong to deserve this—these things just happen. We all carry malignant cells inside us; it’s just our immune systems working overtime to keep them in check so they don't multiply and turn into a tumor. Unfortunately, the reality is that one in three people living today will face some form of cancer at some point. Sadly, you're that one in three. But look on the bright side: you were proactive enough to get checked, and because of that, everything was caught early. Honestly? I think you probably saved your own life by being so diligent.
I'm not sure if you'll lose your ovaries too, but my gut feeling says you won't.
I actually heard a story from a colleague of my mom's who acted as a surrogate for her own daughter. Her daughter was born with uterine malformations and couldn't carry a pregnancy herself... so you shouldn't assume your chance to be a biological mother is gone forever.
But forget all that for a second and just focus on your own recovery.
It’s going to be okay. Hang in there, sweetie. 🙂

p.s. Click on my profile and log into the association's forum 😉
restlessharbor5 restlessharbor5 Newcomer
5 messages
joined Feb 2010
#6 ·
Just trust your doctors and stay strong. I don't know anything about this situation, so that's all I have to say.
Melissa Thompson45 Melissa Thompson45 Newcomer
4 messages
joined Nov 2007
#7 ·
Angela Wright, did your mother take any hormonal treatments to support her pregnancy back then?
There is actually a phenomenon known as "DES daughters"—daughters of women who were prescribed those specific hormones, which can lead to a significantly higher risk of developing rare uterine tumors later in life.
If I recall correctly, that practice was common between the 1950s and the 1970s. If you have a sister, this is vital information for her to have...

Stay strong.
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#8 ·
Melissa Thompson45, my mother wasn't on any hormone therapy at all; she had me, and then four years later, she had my wonderful, amazing brother.🙂

They’ve scheduled the surgery for next Tuesday.😕😕😕 It turns out the ovaries are staying after all, since my doctor talked me into it. I'm starting to panic, and I haven't been sleeping a wink lately anyway.
Sometimes I find myself hoping that the pathology report from the uterus will match what they saw during the hysteroscopy, so hopefully there won't be a need for radiation or anything else... I honestly don't know how I'll face a new diagnosis or how I'll mentally handle more treatment. That first one completely traumatized me.

Thank you to EVERYONE for reaching out and for the support. Please keep your fingers crossed for me.
Megan Young13 Megan Young13 Newcomer
2 messages
joined Dec 2009
#9 ·
Hey everyone! Just wanted to jump in here and say hi... I know things can get a little intense around here sometimes, but let's try to keep our chins up, right? Sending so much love and strength to everyone navigating this journey—you guys are seriously incredible! ✨ kaže:
Melissa Thompson45—my mom didn't take any kind of hormone therapy at all! She had me, and then just four years later, she gave birth to my amazing, absolute favorite brother...🙂

So, they finally gave me a date—surgery is officially scheduled for next Tuesday! ... Fingers crossed everything goes smoothly!😕😕😕 So, it looks like my ovaries are actually staying put after all! My doctor finally talked me around to it... honestly, I’m starting to feel that familiar wave of panic creeping in, and let's be real—I haven't been getting much sleep lately anyway... just tossing and turning all night long...
Sometimes I find myself secretly hoping—just praying, really—that the pathology report from the uterus comes back looking exactly like what they saw during the hysteroscopy... you know? Like, if it matches, maybe I can dodge the radiation and all that other stuff... fingers crossed! But then again, I don't even know how I'd handle a different result. Honestly, I’m just not sure if I have the mental strength left to face more treatment. That first diagnosis completely traumatized me... I'm still trying to catch my breath...

Thanks so much to EVERYONE for checking in and for all the support... seriously, you guys are the best! Just please keep those fingers crossed for me...

Just stay brave and keep the faith...
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#10 ·
Melissa Thompson45 said:Angela Wright, did your mom take any hormones to help maintain her pregnancy back then?
There's actually this thing called "DES daughters"—basically, women whose mothers were prescribed certain hormones during pregnancy—and they end up having a much higher risk for some rare uterine tumors later on.
If I remember correctly, that whole practice was pretty common somewhere between the 50s and the 70s. If you have a sister, this is something she really needs to know about.

Stay strong!

Yeah, but that's mostly linked to ovarian tumors showing up in girls between the ages of 17 and 21.
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#11 ·
boldotter96 said:Sometimes I find myself just hoping—really praying—that the pathology from the uterus comes back identical to what they saw during the hysteroscopy. If it does, maybe I can skip the radiation and all that extra stuff... honestly, I just don't know how I'll handle a different result. I'm not sure I have the mental strength left to face more treatment.

Based on what you’ve got right now—being Figo 1 and G1—there isn't any need for additional therapy. It's just surgery. I'm crossing my fingers for you that it stays that way.🙂
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#12 ·
Ladies, THANK YOU SO MUCH for all the support and for being so understanding about everything I'm going through. You honestly have no idea how much it means to me. Let's stay in touch...
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#13 ·
Surgery was completed on December 8, 2009. Here is the latest HP report:
Since most of the tumor was already removed during the previous curettage, its exact dimensions can't be accurately measured. The tumor hasn't invaded the myometrium, though it does involve some focal endometrial glands. There is no evidence of lymphovascular invasion. The cervical tissue shows mild signs of chronic inflammation.
Total burnout.
The diagnosis is pT2aNxMx FIGO IIA.
My doctor’s take is pretty straightforward: what happened, happened. We got it all out, you're a healthy woman, and there’s no need for any further treatment since we caught it right on time.
I’m heading to my tumor board meeting at that time:
The surgeon who performed my procedure, working alongside my primary doctor as part of a multidisciplinary team, believes that preventive brachytherapy combined with a maximum ovarian excision is the best course of action.
The radiologist made it pretty clear: there's no way around this. We’re looking at both external and internal radiation, and I'm not talking about some mild treatment either—this is FIGO IIA. Honestly, leaving the ovaries in was a total waste of time since they won't be worth anything now anyway. 😢
The pathologist just gave me the news: they only found involvement in a single endocervical gland, there’s no lymphovascular invasion, and the cervix itself is completely clear.
And just like that, the debate kicks off... and here I am, sitting on the sidelines like I'm watching a tennis match. 🎾
I think my oncologist is going to cut this discussion short by recommending I get a sigmoidoscopy and a CA 19-9 test before we decide on the next steps. I’ll be walking out of there feeling pretty drained, and honestly, halfway home I’ll probably just start laughing at the sheer absurdity of the nausea. Well, I'm going to go ahead and get a colonoscopy done. 😳Oops: my CA19-9 is at 4.2, while the reference range goes up to 33.
Now I’m just sitting here waiting on the next tumor board meeting, wondering if they'll come back with more new ideas or finally reach a definitive decision.
Three doctors, three completely different opinions... you can only imagine how much I'm spiraling right now. I am in total chaos. If only they hadn't held that entire debate without me even being in the room. And don't even get me started on the surgeon who left me dealing with all of this after the operation.
So, that’s my story. I’d love to hear your thoughts on everything. Thanks in advance, and sending you all my best!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#14 ·
boldotter96 said:Surgery was done on December 8, 2009, and here is the latest HP report:
Since most of the tumor was already cleared out during that previous curettage, they can't get an accurate read on its actual size. It hasn't started digging into the myometrium, though it does involve some focal endometrial glands. There’s no sign of lymphovascular invasion, either. The cervical tissue shows nothing more than mild signs of chronic inflammation.
Total meltdown.
pT2aNxMx FIGO IIA
My doctor’s take is pretty straightforward: what happened, happened. We got it out, you’re a healthy woman, and there’s no need for any extra treatment because we caught it right when we were supposed to.
I'm heading to my tumor board meeting then:
The surgeon who performed my operation, working alongside my specialist as part of the multidisciplinary tumor board, is leaning toward a specific plan: preventive brachytherapy combined with a maximum ovarian excision.
The radiologist just gave me the news, and honestly? It’s a total non-starter. We aren't talking about some mild treatment here—it’s both external and internal radiation, and it’s heavy-duty because we're looking at FIGO IIA. Looking back, leaving those ovaries in was a complete waste of time; there's nothing left of them that matters now. 😢
So, here’s what the pathologist is telling me: only one endocervical gland was affected, there’s no lymphovascular invasion, and the cervix itself looks completely clear.
And here we go, another one of those debates starting up... honestly, I feel like I’m just sitting there watching a tennis match from the sidelines. 🎾
The oncologist shuts down the debate by suggesting I get a rectosigmoidoscopy and a CA 19-9 test before we decide on any next steps. Honestly, I just walked out of there, and halfway home, I actually started laughing—mostly because I felt so sick to my stomach. Look, I'm just going to go ahead and get the colonoscopy done. 😳So, I’ve got my pathology results back, and it shows an adenocarcinoma. My CA19-9 came in at 4.2, while the reference range goes up to 33. Any thoughts?
Now I’m just sitting here waiting for the next tumor board meeting—wondering if they're going to come at me with a bunch of half-baked new ideas or if we're finally getting a definitive decision.
Three doctors, three completely different takes... you can only imagine the mental state I'm in right now. It’s pure chaos. If they hadn't held that entire debate behind my back without me being there to hear it, it might have been slightly less maddening. And don't even get me started on the surgeon who actually handled my procedure.
So, that’s my story. I’d love to hear your take on all of this. Thanks in advance, and sending you all my best.

Look, speaking from my own indirect experience here, I’m telling you: listen to the oncologist. They are the only ones on the team who actually specialize in this specific area. Everyone else—the surgeon, the pathologist, the radiologist—did their job perfectly fine. The surgeon operated, the pathologist confirmed the diagnosis, and the radiologist read the scans. But the oncologist? They’re the one who ordered all those tests that show everything is sitting at a solid 5. Chemotherapy and radiation aren't like taking an aspirin just to be safe; they aren't preventative measures you toss around casually. They can cause real harm if there isn't a clear reason to use them. The oncologist will make the final call, and that is the decision you need to stick to.
You can always go looking for a second opinion once everything finally settles down.
Rebecca Vaughn7 Rebecca Vaughn7 Active Member
85 messages
joined Dec 2010
#15 ·
I agree—in a situation like this, you listen to the oncologist. They’re the ones who actually treat the tumors. Pathologists and radiologists play their part in detecting them, and hey, credit where it's due, but this falls squarely under oncology now. And the fact that the tumor hasn't invaded the myometrium? That is fantastic news. Regardless of what your treatment plan looks like moving forward, your chances for a long-term, total cure are massive. If this shit had to happen, then finding it this early is the silver lining. This is the best possible outcome we could hope for.
Good luck and hang in there—it's all going to work out in the end 🙂🙂🙂
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#16 ·
Thank you all so much, ladies. I am truly hoping to come out on the other side of this—both physically and mentally. My multidisciplinary team meeting is scheduled for this Friday. I will be sure to check back in once I have some news. Best regards,
Megan Young13 Megan Young13 Newcomer
2 messages
joined Dec 2009
#17 ·
Hang in there and sending you all the good vibes...🙂
boldotter96 boldotter96 NewcomerOP
7 messages
joined Nov 2009
#18 ·
HAPPY NEW YEAR TO YOU ALL🙂! I truly appreciate the support; it means the world to me.
Warmest wishes to everyone!

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