4 posts shown.
Would anyone be willing to explain what it actually means when my Alkaline phosphatase levels come back "low" (26), given the reference range is 54 - 119?
My liver panel results are all within the normal range, along with my glucose, urea, creatinine, red blood cells, white blood cells, platelets, triglycerides, cholesterol, hematocrit, hemoglobin, iron, and so on.
Thanks!
Angela Wright said:Rebecca Phillips25, you should send them a formal cease and desist letter. Honestly, it’s probably best if an attorney handles it, maybe adding a brief note about the legal penalties they face if they refuse to hand over your documentation. I know people who have done this and received their paperwork the very same day.
Regardless of how things play out, go there and stand your ground. Make a scene if you have to—threaten them with a lawsuit, the local news, or even calling the police. You have rights, and they can look up those rights in any legal guide; they are obligated to comply. Don't leave until you get exactly what you came for. They can't touch you for standing up for yourself.
Which hospital were you at, if you don't mind me asking?
The most critical thing right now is getting those samples, because your entire treatment plan depends on them.
Thanks for the advice.
I'll send you a private message letting you know which hospital it is. I'd rather not name them publicly just yet, at least not until I see how they react to my request for the medical records they're withholding and my demand to have the PHI results redone.
Angela Wright said:Rebecca Phillips25,
go see your OB/GYN and ask for a referral to have the pathology re-evaluated for a second opinion. The pathology lab at the hospital where you had your surgery should give you the tissue slides on loan. You can take those to another hospital for a re-evaluation of the pathology, or even send them to a specialist clinic out of state. Just make sure you don't include any of the old reports with the new request. Try to get this done as soon as possible—ideally before you start treatment.
To be honest, some of this feels strange to me too. Usually, if a tumor gets to the size of a handball, it’s considered benign because ovarian issues tend to become life-threatening before a mass can grow that large. In your case, the stage is almost early enough that they are moving straight to adjuvant therapy.
Thanks for the reply.
The thing is, I have no idea how to pull this off. How am I supposed to get them to hand over my tissue slides for a second opinion and give me a referral for a re-test when they wouldn't even let me look at half my medical records or let me make copies? When my father asked the doctor and the head nurse for the paperwork the day before we were discharged, they told us, "No problem, you'll get everything." But once discharge day actually rolled around, suddenly they were refusing to give it to us.
I barely managed to get the urology and colonoscopy results, and even then, it was only because they told me to check back with them after surgery for follow-ups. When I asked why I couldn't just get copies of the CT scans and other reports, they basically told me they don't release that information to anyone.🤷 All the documents I actually have were mailed to my house—just the discharge summary from gynecology and the radiology and oncology reports containing the pathology.
Everything on these papers is so vague; I honestly don't even know how I would summarize it "in short strokes." Everything I know and everything I wrote down, I read while I was still in the hospital waiting for doctors to make their rounds. They used to leave the files on the bed, so I’d sneakily read what they wrote, and I even managed to read one part while walking to different departments for tests—I actually hid in a waiting room for a bit just so I could flip through a stack of papers. And whenever I tried to ask questions, or when my family members did, we were just told that nothing is known yet and we have to wait for the pathology report. Well, now the pathology report is finally here, and I'm still completely in the dark.
If I had known they wouldn't give me my documentation after surgery, I would have taken photos of everything with my phone, but I didn't think to do that.
So how am I supposed to go back there and demand my tissue slides for a second opinion when they won't even give me my own full medical file?🤷
Who would I even go to? The hospital administrator?
Could someone explain what Stage II ovarian carcinoma actually means? Specifically, the spread to the small pelvis? What does that imply regarding which organs are involved? From what I understand and what I read in the surgical protocol, the tumor was adhered to the parietal peritoneum (I hope I got that term right). I assume that refers to the lining of the abdomen, which was removed, and the abdominal washings showed no malignant cells. Is it possible it was labeled Stage II simply because the tumor was stuck to that peritoneum? I mention this because no other spread was found elsewhere (uterus, omentum, cervix, lungs, liver, stomach, intestines, etc.).
Everything I've written here, I also shared with my brother-in-law. He's an internist and a GP practicing in Germany (my husband's sister translated everything since he doesn't speak German, and she's been living and working there as a nurse for years), and both of them are totally baffled. They can't make sense of any of it.
I am really hoping someone can help me make sense of all this, because I feel like I’m about to lose my mind. Earlier this year, I went in for a gynecological exam—honestly, it was mostly because I’d been dealing with a bladder infection for two months straight—but I figured I might as well get a Pap smear and a general checkup just in case that persistent irritation was actually linked to something gynecological.
In those 15 or 20 minutes I spent in the doctor's office, my entire life flipped upside down. I found out I had a "tenant" living inside me: a cyst about 4 inches in diameter. As it turned out, it wasn't just a simple cyst; it was a malignant ovarian tumor.
I was admitted to the hospital, where they ran a battery of tests, though they didn't do an ultrasound or the tumor marker bloodwork since I’d already had those done right before admission.
My CA-125 was at 550, though my other tumor markers looked okay.
The ultrasound showed a multilocular cystic mass, a retroverted uterus, an endometrial thickness of about 3mm, and a blood flow through the tumor stalk of 0.70.
Along with those results, I had a colonoscopy (which showed some inflammation but was otherwise fine), a cystoscopy (clear, no signs of tumor in the bladder), and a CT scan. The CT showed expansive masses on the right ovary exceeding 4 inches, but everything else—lungs, kidneys, liver, etc.—looked normal. My blood work was fine too, aside from some anemia; my liver enzymes were slightly low, but the doctor mentioned that should normalize once I get my nutrition back on track.
Once the testing was wrapped up, I went into surgery.
Right after the operation, while I was still in the recovery room, I was getting very vague information. They told me they had removed everything: both ovaries, the uterus, the fallopian tubes, and the cervix. They didn't tell me the initial rapid pathology report was malignant; I only realized it was ovarian carcinoma (on the right side) later when I read the surgical protocol. Regarding the left side, they didn't specify anything other than it was enlarged and cystic, so they removed that along with the uterus, which apparently had a 1.5-inch fibroid. I didn't realize my cervix had been removed until I was discharged, eight days after getting my stitches out and having a follow-up. Interestingly, none of the ultrasounds—not the regular one nor the color Doppler—ever picked up that fibroid. My Pap smear came back clear later on.
To get to the point: how is it possible that a tumor the size of a tennis ball (according to the CT, ultrasound, and cystoscopy) suddenly turns into something the size of a handball or even a soccer ball by the time the surgeon actually opens me up? How could the CT or the ultrasound have missed the true scale of this mass?
Two weeks after being discharged, I received this official diagnosis, and I am completely lost.
Specifically:
Dx: Ovarian cancer, Stage II
Pathology: Cystadenocarcinoma, papillary mucinous, GI type
Post-op findings: The right ovary was roughly the size of a handball (my gynecologist actually described it as a soccer ball), with irregular walls and adhesion to the pelvic peritoneum. However, the cytological wash of the abdomen showed no malignant cells.
According to the pathology, both ovaries were enlarged, measuring about 6 inches in diameter, with a cystic appearance.
The cervix, uterus, and omentum showed no presence of tumors.
The oncology board has recommended adjuvant chemotherapy using Carboplatin and Paclitaxel. I need to redo my blood work and CA-125 levels.
My question is: why was I assigned Stage II if the cancer was limited to the ovaries (or both, though it's unclear about the left one since they only noted it was enlarged and cystic)? The bladder, uterus, cervix, intestines, omentum, liver, stomach, lungs, and the abdominal wash were all negative for malignant cells.
My regular gynecologist, who reviewed these results with me, mentioned that there seems to be a discrepancy in the pathology report they sent over—that it doesn't seem complete and the diagnosis doesn't quite align with the clinical findings. She suggested I demand an explanation from the surgeon, as he likely has the full, finalized report.
I’m trying to wrap my head around what "Stage II" actually implies. From what I’ve been digging up online, it seems to have something to do with how the cancer affects the organs within the small pelvis and whether it's spreading there. Honestly, I feel completely lost, so if anyone could walk me through this in plain English, I would truly appreciate the help.
Also, I have these pathology results regarding the tumor, but I’m struggling to interpret them. Does anyone know what kind of tumor this indicates? Specifically, what does "GI" mean here—is it possible it’s meant to be G1?
Thanks so much for any insight you can share.