r/Ovariancancer

for context i’ve been to the er four times
now. the first time was because of runny stool. they gave me an iv and told me to stay hydrated. second time i had pelvic pain as well and diarrhea. did a ct w contrast and found a 10cm ovarian cyst on my left ovary.

the next visits were because of pain. and the last visit said it could be a dermoid cyst and that it was smaller than before. but i also didn’t have a full bladder. i finally saw my gyn today and was basically told there’s a potential chance of it being a tumor/cancerous. she had said she was wary about it and we wouldn’t know what it was until it was out. i’m lowkey nervous but trying to stay positive. i also learned they’ll also be taking my ovary and tube as well and will most likely have an open surgery. and with that i’m gonna have to stay in the hospital a couple days.

i’m just overall overwhelmed with everything going on. i’ve only ever had surgery once, and i wasn’t even fully put under last time. for reference im 22. anything i should expect seeing a specialist? or any questions i should ask? anything important i should bring up? please and thank you all!

I just had a total hysterectomy or radical with bilateral oophorectomy in may after beginning my fight against cancer in march 2026. The tumor was causing necrosis and I had to emergently get it out ended up having two surgeries so they could stage it after ended up with ovarian clear cell carcinoma stage 1C3 because my abdomen was full of blood with tumor cells floating in it. My left ovary ended up having a rapidly growing thing on it after the initial surgery that they were worried was more cancer but it ended up being a ton of endometriosis. Any how I already have all this anxiety because all these things keep happening so fast that I kind of haven’t had much of a choice because of the danger. Like I had a pulmonary embolism too. I’m only 33 we were trying to get pregnant for 5 years now I don’t have any ovaries and am on menopause. Luckily my tumor isn’t affected by estrogen so I am able to be on the patch.

Anyways, post op they wanted to do at least 3 cycles of chemo so I started on Carbo/taxol the highest possible dose and of course was scared going into it because reading up on the allergic reactions. I had a small reaction during where I got shortness of breath and back pain but after slowing and doing some oxygen I finished. Then over the next probably 7 days the shortness of breath persisted and got way worse along with strong palpitations that would only somewhat stop if I squatted on the ground. So I ended up in the ER and luckily everything was negative it was just side effects. I got more steroids and Benadryl. Also got fluids. I had neuropathy immediately. Lost all my hair within 10 days. And just overall was extremely sick to where I thought I wouldn’t make it. I felt like a total wimp seeing how so many other people went through way more than me and pulled through or on the other hand other people didn’t have nearly as much issues as I was experiencing.

They are switching me to Abraxane/Carbo and doing an infusion every 3 weeks. I know my reaction to taxol wasn’t nearly as bad as a lot of people but idk if it’s just a combo of anxiety from the menopause too and my hormones being all out of whack but I’m like tormented by the thought of doing more chemo and scared of it being worse. But I’m going next week as my Signatera result from last month was higher than the one before my last surgery. So I kinda don’t have too much of an option at this point.

Can anyone tell me what their experience with Abraxane was like especially those who started with taxol and switched? Any input would be very appreciated. Or any advice as to how you handled it and took care of yourself after.

Thank you.

I just got open laparotomy abdominal surgery to remove a 19cm+ complex ovarian cyst that was suspected to be ovarian cancer. They removed the massive ovarian cyst and also my right ovary along with it. Instead of a bikini line incision they did a vertical one down my stomach. I was in the hospital for 2 days before being sent home.

The first night at the hospital was absolutely brutal and was begging my nurses for painkillers every 1.5 hours because I was in so much pain. I’m home and now and I have to wait 2-3 weeks till I know the results of the biopsy if it was cancer or not.

I had a urine catheter the first night as well as a leg compression machine to prevent blood clogs and by the morning they took it out and forced me out of bed to walk around the hospital hallway in 10/10 pain.

Anyone who had a laparotomy surgery what is your experience with it? How long did it take you to fully heal? How long do I have to be bedridden before I can start doing my regular activities? I can walk but only for very short distances and it’s painful getting out of bed. How long till I can roll over and sleep on my side? Because my back is killing me. What is your experience with this surgery?

Hi, long-ish rant story incoming.

I had an abdominal and transvaginal ultrasound the other day. Not as a part of my follow up stuff (I'm on surveillance for a stage 1 & grade 1 germ cell immature teratoma) but because since the surgery I think I've been having some pelvic floor issues. Anyway, my doctor wanted to rule out other things so she sent me for an ultrasound.

I got there, everything started normally, and physically speaking, the tech appropriately and normally did the scan. At the beginning though, as he was doing it, it came up that I had a ct that didnt show anything else (I think I was probably briefly explaining that I thought I just had pelvic floor issues) and he asked why I'd be sent for a ct before an ultrasound. I then briefly mentioned that I do follow up surveillance scans for my tumour, because it was cancerous.

He then told me, tumours aren't always cancerous.

I told him "I know, mine was a mixed teratoma with mature and immature parts so unfortunately I did have some cancer in there." He said, "well, teratomas aren't cancer" and then laughed a bit. I was a bit uncomfortable at this point so I just laughed and said "yup, stage 1 grade 1. Unfortunately, but thankfully they got it all in surgery." And he proceeded to double down and say that teratomas could not be cancerous and asked if I googled a lot of medical symptoms. I said "Not really, I just listen to my doctors." And he said I should stay off of Google.

I was obviously aware that I had the rest of the appointment to get through and I didn't want to wait and reschedule so I just shrugged and stopped talking. His tone was very condescending, but in a "friendly" way? If that makes sense. Didn't love it.

I have never in my life put in a complaint about somebody in their workplace, it's not something I'm generally comfortable with, because you never know.

But would I be dramatic to put in a formal complaint? I have an appointment with my doctor this week too, so I might mention it and ask that I be referred elsewhere next time.

Idk I'm really frustrated with it and irritated and a bit shocked.

Good morning everyone hope you all are well. Thankfully my wife is in remission now, she had both ovaries removed and she rang the bell after her final chemo session a couple months ago. Her gynecologist wants to put her on hormone replacement therapy but her cancer doctors recommend waiting at least one full year before starting hormones. So I’m asking for advice on how to combat these symptoms she’s feeling. It just sucks she’s only 30 and now she just feels like shit and now she has to wait a full year, it’s just frustrating and she’s a school teacher who’s about to be going back to work in September, and we have a 4 month old baby girl so it’s just a lot to handle feeling this way for the next year. Any advice is appreciated thank you!

Hi I’m new here. I want to know what is the right thing to do now?
I’m on my periods for over 1.5 months. I do not have any pain. All my periods are painless. Just that it is long. Even after bleeding for so long my Haemoglobin is 12. I do not have any physical symptoms apart from periods. Had an USG and found I have two cysts on both my ovaries.
*USG Findings: RO-“There is an unilocular, isoechoic cyst of \~ 5 x 3.3 cm noted with hyperechoic solid areas measuring \~ 2.5 x 1.7 cm within the cyst. On color doppler study, there is vascularity noted within the solid areas.”*
*LO-“Not seen separately. There are multiple (3 to 4) cysts noted with internal echoes, all together measuring \~ 7.3 x 5.7 cm. There are internal echoes and solid areas noted within the cysts. On color doppler study, there is no flow noted within the solid areas.”*
MRI gave O-RADS 4:
“• *Multilocular lesion in left ovary with a few small enhancing T2 intermediate signal nodular areas with areas of hemorrhage with associated features as described MRI O-RADS score is 4.*
*• T2 intermediate to hypointense area with high protein content/ subtle hemorrhage with small enhancing area in right ovary with associated features as described - MRI O-RADS score 4.*

*Prominent uterine endometrium as described.*

*All the cancer markers are low except for CA-125 which is 105. (Could be inflammation)*

So now the doctor wants me to undergo laparoscopic surgery. She said the size is bigger and there is risk of twisting. She also said during the surgery they could change it into open surgery if needed. Or they could remove the ovary if the biopsy comes out to be malignant.

I got this govt job which could have the joining in 4 to 6 months. In case of malignancy I ll be deemed unfit to join. I cannot undergo a surgery and hide the facts while joining. So can this be medical managed until I join or upto a year? Can it be endo even if I don’t have painful periods?
Is surgery the first option or it could be managed with medicines and then I ll undergo a surgery. I’m 33yo and don’t have kids.

U/S found a 3.5cm complex cyst on my right ovary in June. I wasn't having any symptoms beside some spotting (post menopausal). The spotting went away after a few days but my gynecologist recommended an U/S and endometrial biopsy (came back clear). They did a follow up U/S 8 weeks later and the cyst was the same size. My gynecologist suggests monitoring it every few months as my CA 125 was in normal range but she did offer a oncology referral if I want? Everything I've read about complex cyst over 50yo is surgery.

Before I go the oncology route, I thought I'd ask if anyone had a complex cyst just go away on it's own? Thx

I’m platinum resistant. I have ovarian cancer stage IIIB. My first treatment of carboplatin and Taxol did not work. Was put on Keytruda, Avastin and Taxol for 6 cycles. Achieved a complete response with CA 125 dropping from 2400
To 9 and my pet scan showing NED. My oncologist is very happy with my progress but still wants me to complete 12 cycles of Keytruda and Avastin which is fine with me. However in passing my oncologist added even after all this, the possibility of ovarian cancer coming back is 90 to 95%. Now instead of celebrating I am focused on it coming back. Are there any platinum resistant ovarian cancer survivors out there? Would love to hear your stories. Looking for hope and courage to continue this journey. Hugs to all going through this.

I’m a 36-year-old woman, non-smoker, currently recovering from laparoscopic surgery. I’m looking for informed opinions while I arrange a second opinion with a gynecologic oncologist.

I had surgery for a ~10 cm left ovarian cyst that was initially thought to be an endometrioma. During surgery, the cyst was ruptured/opened inside a controlled retrieval bag. There was no free spillage into the abdominal cavity.

The pathology has now shown:
Diagnosis: Endometrioid carcinoma arising in a background of endometriosis
Grade: G2, moderately differentiated
Stage: pT1a / FIGO IA
Tumour: 10 cm, confined to the left ovary
LVSI: Not identified
Ovarian surface involvement: Not identified
Implants: Not applicable
Lymph nodes: Not submitted
Peritoneal/ascitic fluid: Not submitted

The other specimens were reassuring:
Right ovarian cyst: endometriosis, no atypia or malignancy
DIE nodule: endometriosis, no atypia or malignancy
Fibroid: benign leiomyoma
Immunohistochemistry:
PAX8: diffuse positive
ER: diffuse positive
p53: mutational-type
WT1: negative

My doctors are recommending a completion staging surgery, including removal of my both my left and right ovary, both fallopian tubes, uterus, omentum and all pelvic/ para-aortic lymph nodes including PNLD.

Their explanation is that removing everything would significantly reduce my risk of recurrence.
I understand the rationale, but I’m 36 and my right ovary currently has no evidence of cancer. Removing it would cause immediate surgical menopause, potentially for decades. I’m also ER-positive, so I understand that HRT may be a complicated question afterward.

My main questions are:
For FIGO IA, Grade 2 endometrioid ovarian carcinoma, is removal of the healthy contralateral ovary and uterus routinely recommended in someone my age?
Is completion surgical staging necessary because lymph nodes and peritoneal washings weren’t obtained during the first surgery?

Could staging potentially be performed while preserving the right ovary, assuming it looks normal and there is no evidence of disease elsewhere?

Does G2 status significantly change the recommendations compared with G1?

Does the p53 mutational-type staining and diffuse ER positivity change the risk assessment or management?

Would you recommend a second pathology review and/or molecular testing such as MMR/MSI, POLE and other molecular classification before deciding on further surgery?

If complete staging is negative, would chemotherapy normally be considered for this particular presentation?

Is there evidence that removing the remaining healthy ovary and uterus actually improves overall survival or recurrence outcomes in someone with my specific stage and histology, as opposed to simply eliminating the possibility of a future ovarian/uterine primary or recurrence?

I’m not looking to replace my oncologist’s advice with Reddit advice. I’m trying to understand whether “complete staging” and “remove all reproductive organs” are necessarily the same thing in my situation, and what questions I should take to my second-opinion gyn-oncologist.
I can provide the full pathology report if helpful.

Currently on my 1st reoccurrence and they are having to swap my taxol as I keep reacting to it no matter how much steroids I take before and get during. They said it might mean I have to come in every WEEK for it. Has anyone else had to do that.

I can’t do sunshine and puppies for the most part. I have an incredibly dark sense of humor and just can’t deal with people blowing sunshine up different anatomical parts. I’m looking because I cried all day Tuesday and am still leaking at the oddest times.

Uhhh….don’t know all the abbreviations y’all use but I had a “giant” ovarian cyst discovered during an ER visit for what I was positive was appendicitis. Although after skimming through this community 16cm x 15cm seems fairly average? All the medical people here (surgeon and chemo offices) seem taken aback by the size. Okay this is my attempt - High grade, stage 1, clear cell carcinoma of the left ovary. Surgery was complete hysterectomy including my cervix. Also took my appendix, omentum, and some lymph nodes just for shits and giggles. The cancer was completely contained within the ovary’s tumor (which makes sense in a way because all testing and imaging said it was benign). They still decided that I needed six rounds of chemo. I’m due for my next infusion on the 21st. They’re treating me with CARBOplatin and PACLitaxel. I’ve looked up jack shit about them because I don’t want all the possible side effects rattling around in my head. I’m 55 and was post menopausal before all of my inerds were removed.

Hello, I have joined because I’m not sure where else to post. I appreciate any of you reading this and offering input if you have any. The ovarian cyst sub mods are ignoring my request to join and the PCOS sub told me my concerns don’t belong there either. My 24 year old daughter has been diagnosed by ultrasound with an 18.5x14x9cm complex ovarian cyst with septations that the radiologist stated is “not definitely benign”. Her symptoms for about a year-ish have been bloating, intermittent constipation, and more recently a feeling sometimes of nausea during and right after a bowel movement. No abdominal pain otherwise, just some pain at times in her thighs when she has to sit too long at her desk. Some months her period is a little heavier than others but nothing alarming. She is on a birth control ring and has been for probably 8 years. She had the US last Monday and saw her gyno yesterday to discuss. Gyno sent her immediately for tumor marker tests and ordered an MRI and my daughter will be reconvening with her late this month provided she can get the MRI scheduled before then to discuss the surgery plan. So far the CA 125 has come back at 26 and the HCG <3 so that’s good. Her lymphocytes and absolute lymphocytes are elevated, but not by much and the rest of the CBC with diff was normal. Her gyno said if the MRI and tumor markers come back concerning she will be referring her to gyn-oncology at Duke but also would be giving her the choice to be referred to them regardless due to what she described as their more rigorous pathology protocols. She did warn my daughter that gyn-onc surgeons are less likely to prioritize saving an ovary, however. This was quite upsetting to my daughter as she very much wants to have a baby. My inclination would be to say screw that left ovary, let’s take it out if it could be hiding cancer, but that’s not my decision to make for her. Has anyone here had a mass at or near this size removed with their ovary spared? And has anyone still been found to have cancer despite all tumor markers being normal?

Hi all,

I'm a lymphoma survivor (currently in remission 🥳, though unfortunately long term this rare organ-transplant subtype is likely to recur due to ongoing immune suppression for my transplant).

Well, in February of this year, I went for my yearly gyno exam (I am 37, not on birth control as my husband had a vasectomy after 2 IVF rounds I did pre-chemo, we later had our miracle daughter 4 years ago via gestational surrogacy). I wasn't even planning to mention some ongoing bloating, but when pressed (I'm quite thin, so the abdominal bloating looked worse than it was) I mentioned a bit of constipation and maybe bloating....

Well, that led to the discovery of a complex cyst that they have been monitoring every 6 weeks. I had no interest in another surgery (I have had too many already for the transplant and cancer), and I was happy to watch and wait and the gyno never seemed too concerned.

That changed this last follow-up when it had grown (only a bit tbh, went from ~5 cm to around 7, so not as large as many apparently) but also growing pelvic free fluid (which had previously been called "physiologic".

They did an Ova1 test and ROMA.

My Ova 1 came back above 8, and my ROMA was worse (my CA 125 was apparently normal, only 24, but my HE4 was considered very elevated at 176. Not sure of the other values, haven't seen a report, just wrote down the values my doctor said when I got off the phone with him this evening.

On the bright side, apparently my CBC and normal labs like liver and kidney function look perfect (transplant doing it's job!).

However, I am now quite worried. The phone call from the Dr says I need to be seen rather urgently by an gyn onc and that he had already faxed records to the practice. I'm perplexed as up until this point I'd been told by him that all looked ok...

I am terrified of another surgery and being pressured into early medical menopause...and tbh cancer. I already get worried every scan for the lymphoma given I am told it will recur....

Please does anyone have similar experience? I'm not in huge amounts of pain and I'm wondering if a small cyst like this and lab results are hopefully being blown a bit out of proportion...

I am part of the class action against Johnson and Johnson talcum powder lawsuit. I am wondering if anyone else here is as well. We got the estimates settlement amounts and I am incredibly surprised how little it is. I have been heavily considering opting out of it. I was 33 when diagnosed. Was in the middle of IVF when got diagnosed, now going through surrogacy. The settlement won’t even cover half of surrogacy and opts you out of any lawsuits in future if reoccurrence.

My sister was diagnosed with stage 3C HGSC on 7/21/26. She has massive ascites and she gets paracentesis almost every week since being diagnosed. She was scheduled for port insertion and first round of chemo on 8/14, however, they just called her today (8/12) and said they want to push it out another 2 weeks to see if she qualifies for a clinical trial she agreed to at the initial office visit with the oncologist.
Her mass is 12.7 × 22.2 x 15.8 cm. People constantly ask her when she’s due, so she barely leaves the house now. My sister is so uncomfortable and I’m having a really hard time understanding why they would push it back? She was so upset after they called her today.

I feel like I’m missing something, Is this normal?

I’ve had one round of Plax and Carb (last week). I heard one’s scalp can hurt when you start to lose hair. What did it feel like for you? I want to try prepare myself as much as possible. I also suffer from migraines and have scalp pain sometimes during an attack. I’m wondering if I’ll know the difference between an impending attack or the hair loss.

Briefly, my wife was diagnosed with Stage 4 HGSOC just over four years ago.  Primary taxol/platinum treatment and surgery went well; CA125 in single digits, and maintained for a year on Avastin.  After less than another year, CA125 went up (to about 350 over four or five months) and three lymph nodes seen on PET, knocked back down by Gemcitabine + platinum over six months, but not for long.  Lymph nodes again became hot in PET within a few months after that treatment ended.

Seven weeks ago with a CA125 of 350, she started Keytruda and got five shots of stereotactic gamma radiation directed at the lymph nodes.  A couple of weeks later, CA125 was 250.  At her next Keytruda infusion last week CA125 was 32.

Of course, we're happy about this.  Her CA125 never dropped by more than 50% in three weeks during previous chemo, so this looks like an unprecedentedly good response.  But we're also apprehensive.  Her medical team is never willing to make any predictions about the future.  So, I'm left wondering how hopeful we should be after this sequence of results.  Have you seen improvements like this which lasted for a time, or do recurrences tend to be quick? 

I'm sure "your milage may vary" is the inevitable answer, but I'd like to know what the range of outcomes is likely to be, rather than go forward with blissful (or otherwise) ignorance.

I had a CT scan without contrast done for lower back and pelvic pain. The results came back as "normal" but they noted that there was evidence of bowel obstruction. I have not had any symptoms of a bowel obstruction with everything in that regard being pretty normal. My only symptoms are the lower back and pelvic pain and mild bloating.

Has anyone had a CT scan where everything looks normal and they then get a diagnosis later?

Hi. First post on a new account! I just received news not even a hour ago that I have stage 3 small cell ovarian cancer the hypercalcemic type. I am obviously very scared right now as the use words such as "some woman" when talking about remission. I really thought they would remove the mass, my right ovary, and tube and I would have maybe 2-4 rounds of chemo and all would be well..naive i guess. My doc kept saying how rare this cancer is and I am wondering if anyone else here has it or knows of someone who has it?

I feel so scared and feel like I immediately started to grieve my future even though that isn't how I want to live life. I have one million questions. How long will I live? Will I go into remission? etc, etc. I am wondering how everyone handles this news, how they handle the family questions, how they handle the treatments (shall I mention my OCD of being sick), how they handle work/sick balances, etc.

Thank you

EDIT: Don't google survival rate. How absolutely terrifying I feel like I am too young and just can't possibly wrap my head around this.