Hi my wife (46) has been having extreme period pain for about a year now and was thinking of having an ablation surgery to resolve this. Recently the last few months her cycle seems more erratic, she’s just had a period about 2.5 weeks after the previous one ended. Anyway a recent CAS125 blood test came back at 51. Apparently anything over 35 is considered irregular, she’s booked in for a consultation in 2 days where I’m expecting them to arrange an ultrasound scan. My question is simply this 51 not being that much over the “normal” level of 35 how worried should I be? Obviously we will complete all tests/scans as advised I’m just hoping that with this score (51) we have a better chance of it being something more benign?

Just neither of us are sleeping well with this upcoming diagnosis looming over us.

Thanks in advance

Diagnosed in June. Doing well on carbo/taxol now that they've switched me to a new taxol formula 💜 they said that type of reaction only happens in like 1% of people. My CA125 Was 412 before surgery. Immediately dropped to 24. Then with chemo, 17. And now 14. My ovaries were 25cm and 16cm. I asked them to removed my belly button, and they obliged. Belly buttons weird me out 😂

Does anyone know, or has anyone had their CT scan results delayed until their follow up appointment? My MIL had her CT scan last Monday and the results usually come in a day or 2. They still haven’t posted. Called the doctor office and they aren’t sure what’s going on either. It’s a big scan to know if her targeted therapy is working or not. Shes under the impression her cancer is spreading more and they want to wait until her appointment to tell her in person. Has anyone had anything similar happen?

Hi All,
I am having my staging and debulking surgery in a few days! My parents have reached the point where they are now insisting that they should come stay and "help" after my surgery but they were pretty medically neglectful when I was young. I had severe health issues since birth and my mom dealt with it by completely pretending it wasn't happening (she made my dad do all my appointments, surgeries, medications, etc). And my dad, while he did do everything for me since my mom wouldn't, is toxically positive and believes in the power of "toughing it out" which means I had really a lot of untreated pain and other problems as a child, which lead to a lot of medical PTSD and feeling abandoned.

My therapist says I need a place to heal where I feel safe and properly cared for (which for me, is with my husband only) and I don't want to be their "feel good parenting redemption arc" but I am struggling to figure out how to say "actually mom and dad, my healing will go poorly if you are here since you don't know how to cope with all this and be a proper/helpful caretaker".

I had severe sepsis a few years ago when I was visiting them (kidney stone) and they were so unhelpful in the hospital, didn't bring my anything I needed from their house, just sat in my room all day even when I wanted to be alone, were not helpful at all when I got out aside from feeding me meals (I had to stay a while before I could fly home). I was so disappointed.

Anyone here had to deal with this? I know people to say to keep your support network and family close but I think this is one part I want to stay further away.

My mom hasn’t started chemo yet, but oncologist is saying she will start next week or the week after. At the same time, he is also recommending a clinical trial that may start with the second cycle of chemo and after chemo (targeted therapy?). I will get more info from the clinical trial organizer today but would definitely like to learn more about what everyone went through after chemo with regards to maintenance meds or immunotherapy.

Mom is officially diagnosed with stage 3A1, HGSOC. She had a full hysterectomy and also removal of all affected lymph nodes.

Thanks everyone!

Has anyone experienced the same?

Doc says there is accumulation of fluids near the small intestines but they are unable to drain it due to its proximity to the small intestines. Apparently it’s a due to the lymph nodes removal. Is there anything that can be done? They have been taking a stance to just observe for now, so I am hoping for more info so I can push the doctors for a little more proactive action hopefully.

Thanks

I have a meeting with an oncologist tomorrow after finding a 3.1 cm cyst and getting a blood result of 43.1 on (CA) 125. What should I expect?

My mom just had a full hysterectomy/debulking and though she had some complications during recovery in the hospital (severe nausea, small bleed in abdomen, high heart rate), she’s finally home!

When I went to pick her up, I was surprised that her discharge papers only had scripts for Eliquis and pain medication. I didn’t realize that she would be asked to take blood thinners for 28 days after surgery - is this normal? Also, there were no prescriptions for antibiotics? Every time I’ve had surgery, I’ve had antibiotics prescribed afterwards, granted they were for different procedures.

I know my medical anxiety for my mom is high right now, especially since she had some post-op complications. Also, I’m nervous about her bleeding coming back with the eliquis. I’m her caregiver during this process and just want to make sure I’m doing everything right! I would appreciate any insights you may have!

I will be having diagnostic robotic lap surgery at a major cancer hospital in a few weeks. A lesion was found on MRI that is thought to be likely endometriosis yet one radiologist found suspicious and another found indeterminate. They will do a frozen section pathology while in the OR.

Plan is if benign: biopsy lesion, remove the one ovary (not clear if lesion is in/on ovary or on peritoneum wall), and bisalp preventively, and a few other biopsies while they’re in there.

If cancer, I’ll wake up with a complete hysterectomy, lymph nodes removed, etc.

Has anyone done this path with diagnosis? I’m so happy they have the know-how and technology to do all at once yet it’s hard to know how to go in psychologically. I’m hesitant to brightside things (I’ve had the usual weird persistent symptoms+ for a few months and just feel something is wrong, a new kind of wrong) and I’ve had a bad few medical years: short version is breast cancer treatment followed by brain surgery to remove a tumor. I’m still having a complex brain surgery recovery and was about to schedule a surgery to remove my titanium plates. My body is growing things for fun and she’s a sensitive bird.

A friend pointed out that a slate of Bad Things doesn’t add any statistical probability that this is cancer. Still, I just don’t know how to hold it. I feel like it would be easier to know first and then have surgical treatment but am grateful to have this option.

tl;dr having ovarian biopsy with OR pathology & hysterectomy if cancer all at once. Scared of going under and not knowing how I’ll wake up. Do others have experiences going through this you might share?❣️

Hi all, I just wanted to ask if it’s normal to experience such a drop in blood pressure on the third day after first round of chemo. My mom is on carboplatin, paclitaxel, and Avastin. Yesterday she fainted for a few seconds, but this morning she woke up feeling fine—she ate, drank, and everything seems normal. She’s only worried that the upcoming chemo cycles will all be like this I was so scared to see her like this yesterday we called the ambulance and they checked her bp and heart rate and oxygen level only the bp was low they gave her iv fluid then we made her a juice and she slept well, but I’m still worried

My doctor is monitoring me since I have noticed some acid reflux and easily get full eating (not very much) and stay full long after even sometimes waking up. She gave me Prilosec for the slight nausea I get when eating or after and although it seems to ease the heartburn, the early fullness is not going away. This started two months ago as a sudden symptom and not much pain but the reflux is felt in my back if I get it. I have burping and increased gas/bloating that seems to be up a notch since the fullness/queasiness started. I am losing weight because I am almost never able to finish a meal going out and struggle with dinner unless it is small. The most worrying symptom is the extreme fatigue I get during my heaviest period day. I will be seeing my doc in October who says I might need a UGI, but the sudden fullness has me alarmed and wondering if I should take action sooner. 46F.

I posted here a few days ago after just finding out about my metastatic HGSOC diagnosis and received so much support and advice. I appreciated it more than I can say. You all are amazing.

I'm back again because I'm having some trouble mentally and emotionally (which I know is to be expected right now). I find that I can sometimes manage to entirely forget what's going on for a few minutes at a time, like if I'm talking to someone or reading something. Then I remember the diagnosis and it, at best, takes the wind out of my sails and sometimes sends me into a complete tailspin of worry.

I'll be seeing my gynecological oncologist in three days and will have more information after that (very much is up in the air right now and I find myself fearing the worst). And I am planning to get into therapy as well as possibly a support group. But in the meantime, could I trouble you all to lend me some perspective? How did/do you cope with the anxiety when it comes crashing in? Does it get easier with time, even when things are so uncertain? (I hope it is okay to ask these things.)

I thank anyone in advance for their responses and I appreciate you all.

So I finally get my letter - not proper results from biopsy tho!

It states that

P53- Wild Type ER- Positive (Q score 7/8) PR- Positive (Q score 8/8) Provisional FIGO stage (Revised 2014) (Pre-MDTM): 1C1. Final staging may follow MDM review. PLAN: OPA with Dr xxxx, for CT scan and consider conservative management Vs completion surgery.

The issue is that my doctor didn’t even consult me on that, just decided that she’ll go with the conservative management. I have to say I’m 31, but I’m done with having kids and really just want to be at peace and not worry that this can develop further.

Next appointment in October 🤨

What do you think? Am I crazy wanting it all out at this age? I mean HRT should be an option?

My mom has platinum resistant ovarian cancer and she was just admitted to the hospital as she is going into jaundice. She just recently had a surgery that was fairly unsuccessful and was given the prognosis of about 4-6 months. Since she is not a candidate for any surgery to help with the jaundice, what will she have to endure as her timeline shortens? Still trying to wrap my head around how much longer I’ll be able to talk to her and make sure she knows how much she is loved.

I recently went to a fertility doctor expecting the worst news I would be told would be that we would have to try IVF. Instead on ultrasound I was shown the below image of my left ovary. I don’t know if any doctors lurk here, but I don’t know quite yet what to do if this is cancer. I do know all I’ve wanted is a child, and if that is no longer a possibility, I don’t know what is keeping me here anymore.

My mom is on Dilaudid, Zofran, Ativan and Haldol and they seem to cause her so much pain prior to working. Is this normal? Are there other medications that don't have these side effects?

Hi everyone! Thank you so much for taking the time to read my post. I am so very sure I’m over reacting but I just wanted to get this out there.

I am 37 years old, I had my tubes out almost 2 years ago. My last period right before it started I had bad pain on my right lower abdomen. Almost to my groin. It was sharp and in one spot. It wasn’t so severe couldn’t walk but it was pretty intense. I brushed it off and it hurt off and on at varying levels over the next few days. It pretty much went away and then about 2 weeks later started up again. It’s a sharp pain, sometimes it’s worse when I stand up, or move around. Sometimes when I pee it gets worse, sometimes when I bear down. It feels like a pressure and sometimes my back in that area hurts as well. I have been extremely bloated during this time, almost painfully so. And I would have completely dismissed this had it not been for some of the posts here, but I remarked to my husband in bed last night about how I must be getting old because I have heart burn now every day and I have never had it before. I have not lost any weight, or really have any other concerning symptoms. My worry is that cancer runs in my family.. everyone has had it. My grandmother had some kind of cancer whether it was uterine or ovarian I cannot recall anymore. Also I had routine bloodwork done about a month ago before this all started and it was all normal.

My question is I don’t know what to do. I made an appointment with my OB but it’s not for another few weeks. I just really don’t want to be hyping myself up and go to the ER for it to be nothing. Without going into a lot of back story, going to the ER would be a big thing because of logistics so I hate to put my family and others out if it’s not necessary.

Did anyone have symptoms similar to this?

Thank you so very much to everyone who stuck around this long. I wish every single one of you the very best.

Hi all-

My MRI came back without an ORADS score (I used AI and it estimated the language would have the findings fall between a 2-3) The report noted follicles and cystic structure withs septations,likely physioligocal. They also noted a cystic structure with a hyopintense oval focus less than 2cm but not definitively seen on postcontrast images, so no definite solid or suspicious enhancement is noted. Everything else looked normal, except for a small amount of free fluid likely physiologic. Radiologist recommended a short term follow up imaging.

Surgery is next week to remove the entire ovary, at my choice. What to expect? My gyno thinks she can safely remove this laparoscopically...

My mom is in hospice at home and she's taking Dilaudid, Zofran, Lorazepam and Haldol. Whenever she's given the Lorazepam of the Dilaudid, it causes her extreme cramping. It's the same dosage she had in the hospital and it's in liquid form so it's absorbed in the cheek. With that being said, why does it cause her so much pain before actually working? 😕

I have a 13 cm septated mass, elevated CA125 (56) and elevated CA199 (53). I meet with meet with a surgeon tomorrow.

My gyno told me not to worry about a cancer diagnosis at this stage, but all of the various tests I've done and their results (blood, transvag ultrasound, MRI) all seem like it's pointing to some kind of cancer related diagnosis.

I understand that the CA 125 results on their own is not much to worry about necessarily - but in conjunction with the fact I have a huge mass and the other results has me concerned.

Thanks for any insight.

I just got my pathology report with a diagnosis of metastatic high-grade serous carcinoma. I have not been able to talk to my doctor yet. It's night now, so I won't be talking to anyone from the medical team until tomorrow.

I don't know the stage of the cancer. It has metastasized to my peritoneal lining, possibly elsewhere. I know there will be further scans and diagnostics before a treatment plan can be made. I know this is just the beginning (I found out about 6 hours ago). I'm spinning out. I guess I'm looking for any support or advice that you all may have to offer? I don't know who else to ask. Thank you.

My mom (48) was diagnosed with HGSOC stage 3C in March 2024. She underwent debulking surgery followed by 6 cycles of chemotherapy(Carboplatin, Paclitaxel, and Bevacizumab(for 5/6 cycles)). She is HRD +ve and BRCA1/2 -ve. Based on this, the doctor advised continuing Bevacizumab for 17 more cycles, which ended on July 22, 2025. She was also prescribed Olaparib for 2 years, of which 1 year has now been completed.

As part of routine follow-up after the maintenance therapy, we recently went for a PET-CT(FAPI) scan. Here is the concerning finding:

FAPI avid heterogeneously enhancing multiple soft tissue dense lesions are seen along the pelvic
peritoneal lining on the left side (especially around the external iliac vessels); representative lesion
abutting the distal descending colon measures ~ 2.4 x 2.2 cm with SUVmax 11.3. FAPI avid
heterogeneously enhancing well-defined soft tissue dense peritoneal lesion is seen, in right paracolic
gutter region (#176), closely abutting the ascending colon, measuring ~ 3.0 x 1.4 cm with SUVmax 5.1