r/Ovariancancer

Greetings! I’m preparing for open surgery to remove a 12cm tumor along with various organs depending on how things look during the procedure. My gyn onc said to expect a three day hospital stay with a six week recovery. This whole situation has moved very fast and I’m trying not to freak out. I’m also realizing that I have no idea how to prepare for my hospital stay and subsequent recovery from surgery. Any recommendations would be greatly appreciated 😊

I (32F) was just diagnosed with Stage 3C with ascites. Went to the ER on Monday with what I thought was severe constipation or an abdominal strain, and my CT results have kickstarted this nightmare. Today, I feel okay other than lots of bloating/looking like I’m smuggling a basketball under my shirt. I start treatment tomorrow.

I’m so scared and sad, I would be so grateful to hear any advice or survivor stories. I cannot believe this is happening. I love my family so much and don’t want to put them through this. Thank you. 🩵

I want to tell you the story of my mother. She is an incredibly brave woman who has been fighting cancer for years. In 2011, she was diagnosed with stage 3 breast cancer and took Tamoxifen for 10 years. After that, she was better, but in 2023, she was diagnosed with endometrial cancer. After surgery, it was stage 1, so we did not do chemotherapy. Then, in mid-2024, she was diagnosed with ovarian cancer, stage 3C. She bravely fought again, and We gave her 16 sessions of Carboplatin and Paclitaxel chemotherapy; after that, her CA-125 level decreased, and her kidneys and liver were functioning normally. After a scan, there was no evidence of disease. However, within six months, her CA-125 began to rise again. Then, we gave her another platinum-based chemotherapy (Cisplatin and Nab-Paclitaxel). After six cycles, her CA-125 decreased again, and the scans showed the disease was subsiding. But after eight more sessions, when we scanned again, the disease had started growing again, and CA-125 rose. Now, we have paused chemotherapy for two months, and we are waiting to see if CA-125 stabilizes but unfortunately it is increasing (From 13 to 75, then 100 and now 200). Now, for two months, my mother is resting; she has no symptoms, her weight is stable, and everything seems fine, but I am scared. I don’t know what to do. I can’t live without my mother; I love her so much. She has grown stronger through all her battles, but seeing her like this makes me cry. I don’t know what to do.

She is BRCA-. Normal blood Reports. Only Concerning is CA125. her Scan shows that she has disease there but it's same as before 8 session of this chemotherapy.

I Love my Mom so much, I am not married and I can't even think to live without her. we both are too close to each other like friends, she is only 50.

Hey OC sisters!! I am newly diagnosed…I was gaslit and dismissed for over a year prior. My symptoms began over a year ago, I was sent for an ultrasound and told everything was normal!! I did have some vaginal wall thickening and uterine thickening but they said ovaries were normal. So I just sucked it up. The pain went from every now and then to constant, from being on one side to both sides. The pain is a deep dull ache…the pain is also on both sides in my groin and hips. I have occasional lower back pain mainly on the right side and mainly when I am sleeping. I also gained weight suddenly and I stay bloated. I have uncontrollable gas, to the point of embarrassment…as well as extremely painful bowel movements. I also pour sweat pretty much day and night which was new for me as well. I have been having weird chest tightening episodes but I’m not sure if that’s related or not, yet. My lipid panel was off, they call it Dyslipidemia, high cholesterol and low triglyceride levels, but the rest of my regular lab work was normal. Like I said, I am newly diagnosed and just starting this journey but have suspected OC since this all began over a year ago. I am just curious if anyone has a similar story to mine, as far as it being missed on an initial exam, being downright dismissed or if anyone had the same symptoms I have.

Hi all, daughter (31f) of an ovarian cancer patient. (63f.) Mom received her cancer diagnosis in Nov 2024, and since then has attempted 3 different types of chemo. She is now on her final round of the "red devil." Throughout the past year and a half of her battle her main causes of pain and stress is the neuropathy in her hands, her inability to pass bowel movements and the recurrent ascites that she now has to get drained every 2 weeks.

My 2 sisters and I are trying to do everything we can to help my mother kick this cancer but her mental health has declined so much in the past 2 months. All she wants to do is lay in bed all day, she refuses to eat (down to 95 lbs), and will no longer see her friends or talk to them over the phone. She's very clearly in the throes of a deep depression and while I understand, I just want to help her try to pull herself out of it.

Has anyone else here dealt with this? What do I do?

EDIT: So appreciative of all the feedback I'm getting from patients and caretakers alike. This situation is very difficult, the 2 sisters mentioned above do not live with us so I'm primary caretaker and Mom generally doesn't want me to "bother" her unless she needs something. 🥲 But I will keep trying to spend as much time with her as possible and meet her where she's at. Thank you all so much. 🙏🏼

I don't really know what I'm looking for by posting this but I just feel like I should reach out to people in my position that know more about this disease than I do because right now I feel so in the dark

My mum has been undergoing screening and consultations for around a month now for lower abdominal pain that has been going on for six months. She previously had endometriosis and does have ovarian cysts. After CT scans, the doctors found a "complex unidentifiable mass" which, after blood tests and assessing her symptoms, they strongly believe is malignant cancer. CRA125 levels came back high, which I know isn't definitive of cancer but with her symptoms and CT they've decided to go forward in treating her case as ovarian cancer.

Because the mass is unidentifiable and a biopsy wasn't able to be performed she is undergoing an operation in about a month where they will take tissue samples to test for cancer and hopefully find out what the mass is, so the incision will be from her chest down as opposed to stomach down. Apparently if possible they will perform a hysterectomy. I'm still not exactly sure what the procedure will entail and in general I just have no idea whether things will go badly or things might be hopeful because they don't know what the mass is. It could just be a large cyst it could be stage 4 and I'm trying not to stress myself out right now but waiting a month feels awful I'm so worried something will happen to her. They will also be going forward with chemotherapy at some point depending on the operation outcome.

She's 52, doesn't smoke or drink, she looks after herself incredibly well, so those are silver linings I guess? But it's just me and her at home and that's when I'm not at university. I just feel so incredibly upset that I have to wait until June to know if my mum will be okay. If anyone has advice, or knowledge just anything that could give me more clarity I'd really, really appreciate it because I can't seem to think about anything else

Hello everyone, I would appreciate hearing about your experiences. My mother started Elahere and after two cycles her CA-125 increased (from ~300 to ~600), although she is clinically feeling better and her blood work has improved. Has anyone experienced an initial rise in CA-125 followed by a subsequent decrease while on Elahere? If so, could you please share your timeline and outcomes, as we are very anxious and would greatly appreciate it 🙏

Hi all! I am 30, had a double salpingectomy. I have had 2 children and negative for any genetic mutations.

9 days ago I started having abdominal bloating and pain and my period was a little lighter this month. I had pain so I got a CT with contrast and nothing came up in my abdomen or pelvis. My doctor then ordered me a trans vag and pelvic ultrasound and it was negative any ovaries and fluids and uterus looked perfect.

I have a full pain in my pelvis still. My bloating is going down but I am panicking. Is it likely a ct with contrast and a pelvic ultrasound would miss a mass causing these symptoms? I am beside myself.

A very good friend has just been diagnosed with her 3rd recurrence of ovarian cancer, this time platinum resistant. I often give her gifts to try to keep her spirits up during chemo but now I’ve run out of ideas. In the past, I’ve given her a blanket, hats, socks, scarves, tea & snacks, chocolates, crafts, artwork, paintings, etc.

Any suggestions for new gift ideas? I want to avoid sugars, etc., anything unhealthy that causes /promotes inflammation. Thanks in advance for your help!

Hi beauties 🩵

I’m 3 weeks out from total hysterectomy (3rd surgery in 4 months) and just had my port placed. For reference I’m 33 yo, stage 2b figo grade 1 endometrioid carcinoma of the ovary. Getting ready for carbo/taxol next week and wondering what reocmmendations are out there for several things.

First off - HOT flashes - omg they are destroying me. On average one every 45 min to an hour. During the day is annoying but tolerable but the night sweats!!!! I started wearing my Apple Watch to sleep so I can see how many times I wake up from these damn flashes and last night was a record of 12 awakenings in an 8 hour period. I am becoming more and more sleep deprived and am concerned that these interuptions are not only causing me to become a zombie but not allowing my body to heal properly. My doc prescribed gabapentin but so far not much relief at all. Is it crazy to ask for ambien just so I can sleep for more then 45 min at a time? I’ve tried trazodone before but it made me feel funky and gave me the craziest dreams. I have a fan to help cool me down and I keep some ice packs near by with ice water which helps a bit. It just sucks I have to wake up at all and actively get up to ice myself.

Next - chemo essentials - I’ve opted out of the cold cap since my odds of keeping 50% of my hair are 38%. Not worth it to me. I did order a beginner wig from J’adora and hoping it makes me feel like myself on the days I feel good enough to step out. I’m also looking into those caps with hair sewn in for easy walks around the neighborhood or spending time in the sun. Overall I suspect with the summer heat I’ll go for a turban most of the time..I guess only time will tell. Recommendations for scalp care? I already have some psoariasis on my scalp and am self conscious about that being prominent once I’m bald.

Other than tons of water, ice gloves for hands and feet, cozy blanket, charger, kindle with movies downloaded & some hard candies to suck on - any recommendations on what to bring? What kind of side effects am I to expect other than fatigue and neuropathy?

I am anxious but kindof looking forward to diving in and getting this initial chapter over with. I was lucky enough to store 2 embryos prior to getting completely gutted and hope to find a surrogate in the near future so my husband and I can finally start the family we have always dreamed of. We used SGF as our clinic and I’m sure they will have options for surrogacy but I’d love any stories y’all can offer if applicable. I can only pray that my risk of recurrence is minimal but I know I will be closely monitored likely for the rest of my life.

Thank you kindly for reading and for any advice you may have to offer. Stay strong sisters 🩵

Hi everyone,

Hoping that someone has some thoughts about my current situation.

I am 31 with two children. I had a miscarriage that led to a D&C in January. I called my OB last month because I still hadn't gotten my cycle back. She put me on 10 days of progesterone to try to get my body to have a period (I still didn't end up having any bleeding after this.) She then wanted me to get an ultrasound to check for scar tissue from the surgery.

There was no scar tissue, but they found a 5 cm cyst on my right ovary. Wording on the results is "multilocular cystic lesion in the right ovary, measuring 5.0cm in size, mild vasculature is demonstrated. GYN referral and further evaluation with contrast-enhanced pelvic MRI is recommended."

My OB calls me and says she's not worried, she's sure it's a hormonal cyst that will rupture and orders labs and an MRI to confirm. She was expecting my hormonal labs to be elevated due to the large cyst and no period, but they were all normal. However, my AFP lab was elevated to 40.

My MRI results were "There may be an enhancing solid component that measures up to 1.8cm. There is concern for a multiloculated right ovarian cystic lesion with a solid component. An ovarian cysytic neoplasmi is not excluded"

lBased on this result and the elevated AFP, she referred me to OB Oncology. Oncology wanted me to repeat the AFP, which came back 10 points higher (2 weeks after first blood draw) and is now in the 50s on the labs.

I had the apt with oncology on Friday. When the Dr. walks in he says to my husband and me "Well what do you know? What did ChatGPT tell you?" I am also undressed, sitting in an exam gown since the nurse told me he will want to physically examine me. Obviously we were taken aback by his demeanor. When he goes to examine me, he asks "which ovary is it?" And then says luckily he can feel the size of the ovary since I am "pretty thin." He then tells me to get dressed and we can go talk in his office.

In the office, he says he just talked to my OB and he thinks she can handle the surgery herself to remove the cyst and send it to pathology. But based off the scans he thinks it's "nothing" but "I could be wrong!" When I asked about my elevated AFP, he says it's typical in the 100s for his patients and not to worry about it. I asked him could it be just slightly elevated because it was just caught very early? And he said no it would be higher. I asked what were other reasons it could be elevated then. He says "I'm not sure, I would probably have to Google it."

I wish I were joking about this. Thankfully my husband was there or people would surely think I was making this interaction up in my head for a bad movie plot. His bedside manner aside, we are concerned that he did not give my case any weight and just completely dismissed our concerns simply because my AFP wasn't extremely high. I know the only way to confirm anything is through pathology so I guess all we can do is wait for the surgery of that. But also we don't want to wait too long and his lack of urgency on this and if it is "anything" risk having it spread.

What I can't get out of my head is that my scans were flagged twice, by two different doctors, plus my OB who was very concerned. Plus an unexplained elevated lab, no cycle, bloating. I know and obviously hope and pray that it's "nothing" but there's just this unsettling feeling that he didn't take much care on this.

Does anyone have any thoughts or experience with anything like this?

Thank you so much for reading. Hugs to you all!

I’m the wife’s caregiver, she’s 57, beat IDC stage IIB, clear for 15 years last month. Started with left pelvic pain & greenish snot like discharge in late March. TVUS found 7.5cm mass on left ovary, endometrial biopsies were negative. Admitted April 1-4 for heavy IV antibiotics & CT guided biopsy, felt better and discharged. Core biopsy was benign smooth muscle tissue but FNA aspiration of 10ml of fluid from the mass “favors adenocarcinoma” and some stains were performed, basically stated it metastasized from somewhere else, wasn’t conducive for an ovarian cancer. Had endoscopy & colonoscopy and both clear. Scheduled hysterectomy plus tubes, ovaries & mass to come out May 28th pending no growth or tumor marker increase. Also noted “be prepared for an ostomy/stoma as we don’t know the bowel involvement & scheduled a siting session for marking of placement of the stoma. Did another CT scan & labs on Saturday and labs are still normal and mass has complete resolved. There is a meeting on my schedule for tomorrow “without patient” so I’m guessing a tumor board review.

If this surgeon wants to continue with surgery, should we proceed? It’s evident that the antibiotics cleared up an infection and I think the pathology saw atypical cells fighting an infection. Ovary is now 2.1cm.

Also, this is at MD Anderson in Houston. Since March 25th she’s had 19 CT Scans, 14 biopsies, 2 MRI, colonoscopy, endoscopy and untold number of labs & needle sticks.

Thank you in advance,,,

Warning: talk of sex life
How do you guys deal with resentment? I’m really trying to fight it but it’s been hard this week. I miss being able to go out and hang with my friends. I miss being able to have sex regularly. I miss normalcy. I’m starting to get jealous of my friends and family who can go out and do all these things.
I caught my husband masturbating last night, which usually isn’t problem (we’ve talked about it) but we had just got home from the ER and I had went to bed. I woke up at 5am and he was still up. I went to check on him and the office door was locked. He admitted to it.
I think I’m upset because 1. Im horny too, but don’t really get alone time like that and don’t always have energy for sex. And 2. Instead of laying down with me (I’ve had an especially hard week this week), he chose to lock himself in his office play video games and masturbate.
Again I’m not usually upset about stuff like this and we were pretty active before all of my health stuff got more complicated. And he’s a really amazing guy, this isn’t even really about him. It’s about my resentment and jealousy.
Another example is, I had to leave a party the other night and I was upset. I was texting my best friend and she texted back pretty late saying “sorry I’m really hungover” I’m not mad at all she texted back late, I’m more so jealous she got to have fun at the party and I had to go home because I feel like shit.

I don’t want to feel this way. I’m really trying to work through my emotions but I’ve just been in a bitter mood all week. I hate feeling like this.
I’m sorry if I sound selfish and like a horrible person.
Any advice? Thank you ❤️

I (34f) just found out today my mom (55f) has ovarian cancer. She went to a specialist for different check up and because her PCP sucks she requested his help with her other symptoms. He ordered her a CT scan which showed area of concern and she had a follow up MRI. Today he called her to tell her it was ovarian, and it was serious and he was referring her to gyn/onc. He didn’t provide her a stage or any additional information because it’s not his specialty.

I’m so scared. I’ve been on Google which is horrid. I want my mom to be around forever of course. I want to know she can fight this and I’m scared ovarian isn’t symptomatic normally until later stages.

I also think I need to get brca testing done?

I’m trying to breath but I’m a mess and idk even know where to get support so here I am on Reddit.

What do the acronyms on here stand for? What kind of weeks ahead do we have?

I'm 30 years old. Have had two kids a double salpingectomy and no genetic issues. My mom was tested and negative for brca.

I've been having pelvic pain for a week and bloating and abdominal issues. I went to the er and they did a CT with contrast that showed nothing. I followed up for an ultrasound but am awaiting the results

I don't know what to do or what's going on with me. I can't leave my kids, I can't. I have back and lower back pain and pelvic pain. I had some weird tissue on my tubes when they were removed. I'm also around 8 days post ending taking my Ativan for anxiety which online says can disrupt your stomach and cause cramping but I don't know.

Please tell me I'll be okay. Wouldn't a ct show a mass in my pelvis? I can't sleep

My CA 125 has gone up slightly from 11.2 ( the lowest) to 12.4. I am almost 7 months NED. Is this the beginning of a trend or is this to be expected. I wanted a HE4 lab but for some reason not a lab done at Vanderbilt.

I (38F) like many of you that I've read so far, went to urgent care with constipation and abdominal pain. 8 hours and a CT scan later I was told I have a 25cm mass with fluid. I'm so scared, my daughter is only 6. My husband is terrified. I need positive input, anyone, please.

I’m on my first reoccurance after almost 4yrs of NED. My first round of chemo is down. I always have hot flashes as I had my total hysterectomy with the first occurrence. They are well controlled with Effexor (not gone but tolerable) but man alive-chemo is making them come on with more frequency and intensity!! Is this just the steroids or the chemo itself? I’m getting the taxol/carp and I start Bev with the next treatment

I have been going to a Brazilian wax place in Europe for the past 2.5 years every month almost since moving here and yesterday for the first time I saw that she uses real TALC powder, not cornstarch, from Felce Azzurra. I have been absolutely terrified and cannot sleep since it happened as I know it is linked to ovarian cancer. I must have had at least 20 exposures of talc on my body/genitals in that period, and maybe some more as a baby as I vaguely remember being powdered with J&J. What should I do??? Has anyone been exposed to talc before? I am only 30 years old and suffer from debilitating health anxiety, I can't sleep for 2 nights and read all research linking talk to ovarian cancer and how all women with ovarian cancer who used talc, and even some who didn't personally use talc, had talc and/or asbestos fibers in their reproductive organs.

I’m due to have a Bilateral salpingectomy and was on the NHS cancer pathway. The most recent ovarian cyst Reddit subs posts are 249 days ago- if you know of other subs to discuss this on please let me know. Two aunts no longer with us had ovarian cancer 10 years ago and now I have pre-op assessments quicker than expected.

I have a multi oculated adnexal cyst which is put as ‘Significant’ on my records. Certainly it’s painful and not having had a period for 5 years it’s why it’s been found after unexpected bleeding. I’m in the U.K. so don’t have annual gynaecological appointments like seems to happen in America. Kind of wishing this was a worldwide occurrence.

How long is the recovery post surgery? I have good pain tolerance but have never given birth but have had my gallbladder removed cos that was a problem and incredibly painful. I’ve read some posts on the sub where people have said they were back at work 5 days later and had little pain but I’d rather prepare for the worst.

My pre-op assessment is in a few weeks so any suggestions for questions to ask are welcome.

Workwise I need to be fully compos mentis to return post surgery as the consequences of not being so are bad bad. So any experience from others is welcome. Without being specific about what I do, just imagine you’re a 999 operator or a nurse or a surgeon.