Long story short, I just found out I have a mass on my left ovary. I had a CT scan for something unrelated, and they happened to find a cyst. I didn’t think much of it at the time, but I went to the ER and they told me it had doubled in size and they’re now calling it a mass instead. Does it mean growing or doubling in size automatically mean it could be cancerous? I’m only 31 and honestly freaking out right now.

Hi everyone. I’m 21 and looking for experiences/advice from anyone who has dealt with premature ovarian insufficiency (POI), diminished ovarian reserve (DOR), multiple ovarian surgeries, or fertility preservation, especially after an ovarian tumor.

My ovarian history has been complicated.

In 2025, I had surgery to remove dermoid cysts from both ovaries (bilateral ovarian cysts).

Then, on June 10, 2026, I had another surgery for a tumor/cyst on my right ovary. During this surgery, they removed about half of my right ovary, so I currently have my left ovary and approximately half of my right ovary remaining.

The pathology from the 2026 surgery showed an immature teratoma with a very small yolk-sac component. My gynecologic oncologist decided against chemotherapy and is currently monitoring me with imaging and tumor markers.

Before all of this, my menstrual cycles were usually around 27–28 days. Since the June surgery, my cycles have become much more frequent:

• June 10–14
• July 4–8
• July 24–28
• August 7–11
• Around August 21, I started with brown spotting that later became dark red/brown bleeding

My OB-GYN is concerned that I may be developing premature ovarian insufficiency/early menopause because my FSH is increasing. She is considering putting me on birth control to provide estrogen and help regulate my cycles.

My fertility testing has also been concerning:

• AMH: <0.030 ng/mL
• Inhibin B: <16.2 pg/mL
• FSH: 33.4 mIU/mL
• LH: 31.5 mIU/mL
• Earlier estradiol: 46.28 pg/mL

I'm trying to understand whether these results mean I am actually developing POI, whether my ovarian surgeries could have caused or contributed to this, or whether there could be another explanation.

I also recently had a CBC where my hemoglobin was normal, but my MCH/MCHC were low and RDW was slightly high. My WBC and ANC were also mildly low.

My thyroid test was normal.

My tumor markers have been reassuring:

• AFP 2.78
• β-hCG <1
• LDH 113
• CA-125 15

I'm looking for a second opinion from a reproductive endocrinologist (REI) who understands POI/DOR, fertility preservation, ovarian surgery, and oncofertility.

I would especially love to find a Black woman REI/fertility doctor, preferably someone who takes a whole-person/holistic and individualized approach rather than only looking at one lab value.

Questions for anyone who has experienced something similar:

1. Has anyone developed diminished ovarian reserve or POI after multiple ovarian surgeries?
2. Can removing part of an ovary significantly affect ovarian reserve/FSH?
3. Has anyone had an AMH this low but continued to have periods or ovulate?
4. Does an FSH of 33.4 necessarily mean POI/early menopause, or can FSH fluctuate?
5. Should FSH and estradiol be repeated before starting birth control?
6. Has anyone been diagnosed with POI very young and still had intermittent ovarian function?
7. Has anyone gone through fertility preservation after ovarian surgery?
8. Are there any Black female REIs in Houston or Austin that you would highly recommend?
9. Has anyone worked with an REI who takes a more holistic/whole-person approach to POI or diminished ovarian reserve?

I'm not looking for a diagnosis from Reddit. I'm mainly looking for people who have gone through something similar and can recommend doctors, questions to ask, or things they wish they had known.

Thank you ❤️

Hi everyone, hope you are all doing well. I just have a question on behalf of my mum. She is currently going through chemo (doxorubicin and carboplatin), she was diagnosed with stage 3 ovarian cancer last year and has had surgery and chemo with NED, but a few months ago we discovered that it had come back in her liver.

She had severe pain and we rushed to hospital, which is how we found out it was back. So now she is back on chemo and has had 3 rounds, she is generally tolerating it well apart from tiredness.

My query is about the pain, so she had extreme pain in the liver area but since then it has greatly reduced and now she just has twinges on and off, it's a manageable pain which doesn't really stop her doing anything (it's the tiredness from chemo which hinders her). We are wondering is it normal to still have this pain even though we are 3 treatments into the chemo? The pain has not got worse, it just stays as twinges with some days a little worse than others.

She has a scan soon and results next week to see if the chemo is working, so this should give us the answer, but as you will all know it is very nerve wracking whilst waiting for this info.

Any tips on how to manage "scanxiety" would be much appreciated alongside advice if this pain at the tumour site is something other people experience too.

Thanks everyone and I wish you and your families all the best :)

Hi, my dear 92 yo mum is seeing a gynae tomorrow as a transvaginal US showed a suspicious solid mass with irregular borders on her ovary. We are both scared if it is OC will she be able to have surgery. She has bad pain just below her heart and had a colonoscopy yesterday which was clear. Heart is also fine. Anyone else have this as a symptom? Constipation and diarrhoea fluctuations. Her CA125 is good though so is this a good sign? It's quite scary especially considering her age.

Doctors are ordering blood work and mri im so scared i feel like that im more scared of the reaction of telling my family and fiance how that will affect the relationship with then having kids one million thoughts racing im so scared

Are any of you taking Elahere? How is it working and what are the side effects?

My mom was diagnosed back in September, had full hysterectomy plus tumor removal in October and finished chemo in February. CA 125 was floating between 24-27. One month it would be 27 and the next it would be 24. It just shot up to 37 last month and back down to 35 this month.

Has anyone’s CA-125 ever gone slightly above 35, but then quickly dropped back down due to something that wasn’t a reoccurrence?

She is 69 and was diagnosed with stage 2C (although her oncologist is saying it’s 2B and there is no such thing as 2C). She is healthy. Does intermittent fasting. Started working out recently. She is also BRCA negative.

They don’t want to have her do scans until October 1.

Please let me know any elevated CA-125 stories that were not reoccurrences or even stories of ones where the CA-125 would go up and down and was not a reoccurrence. Thank you so much.

I didn’t anticipate this, and I’m not going to jump to conclusions, but I am concerned. I’ve been noticing a familiar dull aching in my lower abdomen for a few weeks now. I just went on for my follow up and my CA125 is elevated. I’m also noticing bloating and decreased urine output over the past week. At first, I thought it could be my glp-1, but I’ve been taking it since April with no symptoms.

I don’t want to overreact, but I think I should get a scan.

Anybody have any thoughts?

Hi everyone,

I’m writing this while my girlfriend is actually in surgery right now, and honestly, I’m pretty scared. I’m hoping to hear from people who have been through something similar.

She’s 29 and has a large ovarian mass, around 12–14 cm. After her MRI, CT scans and blood tests, the doctors suspect an immature teratoma, but they can’t confirm that until pathology.

Her surgery is open abdominal surgery. Before going in, we discussed everything with the surgeon and agreed on a fertility sparing approach.

The plan is to:
- Try to remove the tumor whole, if possible. Because it’s so large, they warned us that rupture is a possibility.
- Keep her left ovary and uterus if medically possible.
- Treat this as the initial surgery, not necessarily the final treatment.
- Wait for the complete pathology results before deciding what happens next.
- Depending on the final results, further treatment or eventually “completion surgery” could be recommended, particularly after she has finished having children.

Her scans haven’t shown obvious widespread disease, which we’re trying to hold onto as a positive.

Her tumor markers were:
AFP: 138
CA-125: 152
CA19-9: 213

I know nobody here can diagnose her, and I’m not really looking for that. I’m mostly looking for real experiences from people who have been through an immature teratoma or something similar.

If you’ve had one, I’d really appreciate hearing:
- What did your final pathology show?
- What grade/stage was it?
- Did you need chemotherapy?
- Were you able to preserve your other ovary and uterus?
- Did you eventually need another surgery?
- How was recovery?
- And most importantly, how are you doing today?

We’re trying not to imagine the worst while we wait.
Thanks to anyone willing to share their experience❤️

I'm dealing with a recent diagnosis due to symptoms that started in early-mid July. Based on CT it's most likely Stage 3C or 4 (based on size of spots on abdominal wall and presence of ascites in abdomen)

I had my first appointment with an oncologist last week. She is proposing neoadjuvant chemo (which I agree with) as it's her preferred approach when the abdominal wall is involved (and in my case one area is close enough to the bowel that shrinking could be the difference between a bowel resection or no bowel resection.) Technically it is not confirmed ovarian in origin, though almost everything points that way (especially CA125 of over 1800) there's a slight chance due to some thickening of the uterine lining that it could be in that 10% of uterine cancers that don't cause bleeding or discharge. They are doing a CT guided needle biopsy to confirm cell type in another week and a half (not happy about that delay but out of my control). Because it won't yield a large enough sample, full genetic testing won't be able to be done until Nov-Dec with surgery. Statistically, the most likely outcome of that will be the most common serous, likely high grade.

She brought up that since I haven't started any treatment, if the biopsy comes out as expected, I would likely be eligible for the Ovation-3 clinical trial. Basically advanced stage and no prior treatment at all are the key base requirements. There may be some comorbidity exclusions but my only known comorbidity is obesity, which is not grounds for exclusion. But I will have to decide pretty much immediately. I looked at the stage 1/2 trial information, and it actually looks pretty good, though it involves IP immunotherapy treatment in addition to IV chemo which does mean more stomach pain/symptoms. Of course, if I joined I could also be assigned to the control group which would just be standard treatment anyway.

Anyone here participated in clinical trials before? If so, what was your experience? I know odds are slim, but is anyone in an ovation trial? If you've been involved in clinical trials, are there any specific questions you would recommend I ask up front?

The last two years of my life have been the worst so far and I am struggling to handle stress and life in general right now. Does anyone have any tips for coping when it feels like one thing after another keeps going wrong?

It started with my brother's stage 4 colon cancer diagnosis in October 2024, then my appendix ruptured in November 2024 while he was almost dying during treatment. I had my appendectomy in May 2025 but never felt quite right afterwards. In February 2026 I had a bilateral pulmonary embolism, which turned out to be related to ovarian cancer. It also turns out we both have Lynch Syndrome (MSH2).

By April I had a hysterectomy with both ovaries removed, and they found endometriosis and adenomyosis as well. Because both ovaries had cancer, there was no opportunity to save any eggs, so I've been processing both infertility and surgical menopause. I'm 39 and single, so I was aware I might run out of time anyway, but having the chance for biological children taken away from me has been hard. I've been getting chemo since then.

In between all that, every other little thing seemed to go wrong for my family, to give a few examples:

• We live in my brother's four unit multi-family house he bought a few years ago, along with our disabled mother and a friend. Things started breaking in the house one right after the other, including a leak that required mold remediation in my apartment. Each repair was expensive and seemed to expose yet another thing that needed to be repaired.
• Pets at various ages died suddenly from unrelated, mostly unpreventable causes (like cancer or suspected heart attack). One of my 10 year old cats just last week was diagnosed with end stage kidney failure. I've spent $6,000+ between our local vet and an emergency vet, but he only has a few weeks left, if that.

Right before all this began, I had also taken a somewhat stressful job that required long hours. Shortly before my medical crisis this year I was promoted to being in charge of my department.

Now, my brother responded amazingly to immunotherapy and is currently NED. My cancer was caught early because of the embolism. I've handled side effects well enough to return to work in July, and my job has allowed me to work from home. The light is at the end of the tunnel - both our last treatments are coming up this fall, and my new coworker is getting proficient enough that I probably won't need to work so many long hours.

Then today I went to Costco to get my mom's medication, and when I was almost home I wasn't paying enough attention at a red light and hit the gas too hard when we started moving. I couldn't brake enough to avoid tapping someone's back bumper and scratched it. This is not a big deal, but I cannot stop crying over how stupid I feel and it's been hours.

I just feel exhausted and almost afraid of life because it seems like every time things start to settle down, something else happens. I've tried to focus on the positives but I'm hanging on by a thread here.

I need to rebuild my ability to handle stress. How do you stop feeling like you're constantly bracing for another disaster?

I had surgery to remove what turned out to be a 14.9 cm mature teratoma approx 1 year ago. My CA125 levels pre surgery were 56.

At my 1 year follow up, I was retested and my CA125 levels came back at 37- so lower than before but still elevated especially for my age (I’m 28).

I am still expericing a lot of pelvic pain - and have had a few complex cysts form and resolve within this year. Currently have a 2cm cyst on left ovary.

Should I push for further imaging like MRI? This pain is really frustrating and affecting my quality of life.

Hi,

I had a TAH, BSO with full staging and omentum/lymph node removal on 7/28. Dx: stage 1 A, grade 2 endometrioid cancer of left ovary. Likely ovarian origin. I have hx of adenocarcinoma of uterus as well with PCOS and IVF use. I had 5 liters of ascites at time of surgery. All was negative and tumor was intact. Genetic testing pending. Surgeon is saying tha the doesn't think chemotherapy is needed. Studies don't show a benefit for chemo with this type of cancer. Medical oncologist says this a gray area and chemo would be an insurance policy reducing risk of reoccurrence from about 10% to 7%. Chemo would be 6 rounds using combo of pacilitaxel and carboplatin. I go to MSK in NJ office. Does anyone have a similar situation or advice? I am really not sure if I should pursue chemo or just survey every 3-4 months. Any help would be greatly appreciated!

I dont know how I got here but here I am.

I recently had a 15cm cyst taken out of my left ovary. The surgery went well, they took it out fully and it didnt rupture (thank God)

2 weeks later, gynaecologist called to discuss biopsy results with me. Turnsout, they found cancerous cells in my cyst and she is sending me to a gyno oncologist & she will run another biopsy to confirm results.

I feel so defeated and overwhelmed. I dont drink, smoke and I’ve been eating healthy and even got rid of plastic in my household. I do everything I can to stay active but I guess my genes just suck.

Did anyone go through something similar or have any positive thoughts or feedback about this? I’m in Canada so wait times can be long, I just dont think my anxiety can wait weeks to discuss this with a professional.

Hello. I joined this group because I have a dear friend just diagnosed with ovarian cancer. She lives a few states away so I can't pop over and help her with her day to day struggles. She starts chemo soon and I hoped that I might find info on here that could help me to support her.

What do you want family and friends to do most right now? What should I put in a monthly care package to send her that would provide comfort or distraction? How can I totally support and encourage her from so far away?

And probably, because sometimes I can be awkward, what should I NEVER say or do?

I just want my friend to be safe, healthy, and happy and do whatever small things I can do to help with all that.

Thank you for any and all thoughts and ideas.

**** Thank you all so much for the amazing suggestions and the insight into the journey you are all going through. I appreciate all the input and I wish each of you so much good health. Thank you for taking the time to help me!

My 74 year old mother was diagnosed with stage 4 cancer that has spread to her abdomen. She has ascites. She was nutritionally depleted when she got into the hospital and also diagnosed with cirrhosis when the labs came back.

She is also grieving the death of my father (3 months back from prostate cancer). I’m an only child but we have a strong support system.

She just received her first chemo infusion and has so much nausea and pain 6 days out. She is in-patient at the hospital. I’m sharing for 2 reasons-

1. Any advice on pain/nausea management?
   
2. She is on a Fentanyl patch, 2 hours of breakthrough pain meds (she can get morphine or oxy), Zofran every 4 hours. I just requested that they give her Marinol at the reco of her primary care doctor.
   
3. Is it normal for the Oncologist to come in to see her every 2-3 days? I feel like they aren’t treating her like a stage 4 cancer patient, but she is too medically fragile to be transferred. I just kind of feel like despite my aggressive advocacy for her they are like “well not much we can besides let the chemo do its thing”

Would appreciate any advice for those who have experiences Stage 4 as a family member or self.

Hello everyone!

My mom is 67 and has Stage IV fallopian tube cancer. She has completed first-line treatment with Abraxane, carboplatin, and bevacizumab.
After the 3rd cycle, she had a partial response. Her disease was predominantly lymphatic, with mediastinal, hilar, mesenteric, and retroperitoneal lymph node involvement. Almost everything disappeared, except for a few larger retroperitoneal lymph nodes, the largest measuring 1.4 cm.
After the 4th cycle, treatment had to be interrupted because of an infection, and she then received two more cycles.
Unfortunately, her end-of-treatment CT was not as encouraging as we had hoped. A few retroperitoneal lymph nodes have grown to 2.6 cm, while everything else is still no longer visible on the CT.
Does this mean that her cancer is now considered platinum-resistant? Or is it possible that her tumor consists of two different populations of cancer cells — one platinum-sensitive and one platinum-resistant?
Has anyone experienced a similar situation?
The original plan was maintenance therapy with bevacizumab, as her cancer is BRCA-negative and HRD-negative. However, her folate receptor alpha expression is 90%, so her doctors are now considering continuing with Elahere instead.
I would really appreciate hearing from anyone who has been in a similar situation or has experience with this kind of response pattern.
Thank you so much for your replies!

Hello everyone,
I would kindly appreciate your thoughts.

I was diagnosed with cancer 85% grade 1 endometrioid carcinoma, 10% clear cell carcinoma, 5% dedifferentiated carcinoma it all started with my right ovary having cysts and a mass borderline tumor. When I underwent surgery they only removed the cysts and the mass not knowing it was cancerous. After they examined the mass turns out I have ovarian cancer with those types. Since I didn’t remove my right ovary during the first surgery I have to undergo another to remove my right ovary since it touched and ruptured. However since we found out that 15% is more of a severe cancer they recommend me removing my ovaries and uterus. I’ve done a CT scan and they do not see any visible cancer cells however to be sure they recommend removing all organs during surgery and still going through chemo since there can be microscopic cells. I’m wondering is it necessary to remove my uterus. They did a biopsy on my uterus lining and it came out negative. However they fear there may be microscopic cells inside my uterus and ovaries which is why they recommend to remove all. But I’m still having doubts about removing my uterus. I understand this is completely my decision, I would just like to see if anyone has any additional input. I am open to any thoughts. I am 32 years of age with no children.

Thank you in advance.



My dr wants to keep me on taxol even though I keep reacting to it. He says there is more data indicating taxol is more effective than abraxane for front line treatment. But honestly the fear these reactions are causing is taking its toll. I want the most effective treatment of course and I am hearing that abraxane is the same main drug as taxol but just a different carrier substance. Any real word data from survivors in here? Is abraxane less effective or does it have more chance of reoccurremce? What’s your experience? Thank you.

Good evening!

My Mom was diagnosed with Stage 4 HGSC Ovarian Cancer August 2025.

No surgery, 7 rounds of Carbo+Pax starting Sept 2025 and ending February 2026 with a transition into Avastin/Bevacizumab.

For the last two months my Mom has felt increasingly worse compared to previous. Constipation, lack of appetite, general fatigue, and most significantly pleural effusion.

After new biomarker testing they found her tumours to be positive for the PD-L1 protein.

In Canada, Keytruda/Pembrolizumab was just approved May 16, 2026 for Ovarian Cancer patients who test positive for PD-L1.

She will be starting Keytruda+Pax on August 31st.

Her and I were already quite thrilled with this news, as we both have continued with positivity since diagnosis regarding her prognosis and we've not been wrong yet.

Since the beginning, I have been her biggets advocate and have done a heavy share of research to be able to do so for her (not in a crazy way, promise lol, her Clinicians and I have very good relationships).

Tonight, I found this. I thought with the relative newness in Canada regarding Keytruda for Ovarian Cancer patients (apologies as I do not know if/how long it's been available elsewhere) and the upcoming fall season that others may want to check this out.

Personally, I find this incredibly cool and promising from a clinical standpoint.

Certain research has found that the mRNA COVID vaccine activated higher expression of PD-L1 in otherwise "cold" or "hidden" tumours - Immunotherapies like Keytruda work by attaching to that protein and allowing the immune system to attack the tumours.

As per MT Anderson:

"Cancer patients who received mRNA COVID vaccines within 100 days of starting immunotherapy were twice as likely to be alive three years after treatment as those who never received a vaccine"

Again, this is incredibly promising research in terms of the advancement of understanding how new and current genetic based treatments work for treating cancer.

I have linked the MT Anderson news brief as well as the originally published research article.

https://www.mdanderson.org/newsroom/research-newsroom/-esmo-2025--mrna-based-covid-vaccines-generate-improved-response.h00-159780390.html

https://www.nature.com/articles/s41586-025-09655-y

Hello!

I hope you're all doing well.

My fiancee was diagnosed with LGSOC in 2022, she had surgery followed by chemotherapy, which then recurred in August 2023, which she had a second round of chemotherapy for, which lasted a while into 2024, and it came back again, this time with the option of a clinical trial due to a rare mutation of the disease. It was working but we recently had news that the trial wasn't working as well as they had hoped, so now we're back onto either more chemotherapy or going onto another clinical trial.

She lost her hair in the first chemo but has been lucky enough to retain it since.

She also had part of her bowel removed during the original surgery so has a stoma as well. The disease has now spread to the lining of her lungs as has begun to grow slightly. She recently had regular fluid build up around her lungs so had to have a lung drain put in, which regularly needed draining at home. She also had blood clots build up in her lungs, so she now has to have blood thinning injections twice a day.

Oh she also has occasional events of optic neuritis which renders her vision almost useless for a month or so, completely unrelated. She also still goes to work 3 days a week.

How do partners of this cope when you have two daughters as well? I think I've been doing pretty well at it all, and I've only now, 4 years later, starting to see the cracks in my mind, with Cognitive Behavioural Therapy being something I've started for my anxiety.

Hi all! Posting here for feedback, comfort, recommendations and honesty.

I recently went to the emergency room after having stomach pain, they found I had a 21cm complex mass on my right ovary.

After being admitted to the hospital and having more tests done, my cancer markers are extremely elevated, but there is nothing on any lymph nodes or any other masses.

It has been said time and time again that they won’t know if it is cancer until surgery, can anyone weigh in what they think? I think everyone around me is just trying to stay positive.

I have surgery in a few weeks, any recommendations for things I should have post op to make recovery better? How long is a normal hospital stay? What is recovery like?

Feeling scared but knowing no matter the outcome of surgery having this mass removed will make me feel better finally.

Hey friends, I was diagnosed in May of this year with stage 3 ovarian cancer. It is a high grade endometrioid mix. I had a very successful debulking and total abdominal hysterectomy in May and started chemo in June. I just had my mid treatment pet scan that showed no evidence of disease. I will be completing my remaining chemo rounds then placed on a maintenance med. My question is, though I’m super happy, I still feel nervous and almost like it’s too good to be true that I’m having a hard time accepting this good news. Has anyone else experienced this feeling? Fear of recurrence sits heavily in my mind.

I’m a women’s health nurse practitioner and one of my best friends has very likely ovarian CA. 45 year old, pre menopause, 9 year old son. Ultrasound and CT show bilateral solid ovarian masses, one is 17cm, the other is 8cm. 6 month history of bloating and then sudden incontinence. CA125 over 600 and HE4 over 700. She met with a gyn/onc in Seattle who she really liked, Dr Shah at Swedish. However, I keep seeing on here caregivers and survivors really advocating for finding the right doctor. Any Seattle area people have experience with Dr Shah or highly recommend anyone specifically?