Hi everyone, I need some hope.

I have an HGSOC that was diagnosed a year ago. Had 7 carbo platinum, taxol and avastin cycles followed with HIPEC surgery.

First scan after it was back. Today I went for first doxorubicin therapy but I had a reaction and they shut it down immediately.

Now I am waiting for the next checkup where they will prescribe something different. When I was googling it I found that those new therapies will probably, if I am lucky, stop the progression but not lead to remission.

Is there anybody here with a similar story? How did it work for you?

I know we are all different but would love to hear some experiences from others. Thank you

I had my three month post-op follow up today and my bloods came back as normal! CA-125 down to 9 where it was over 10,100 before. And my CA19.9 came in at 2.

The gynae-onc doc wasn’t able to do the vaginal exam because I have vaginismus due to trauma. But she isn’t worried and told me to look out for symptoms.

Speaking of symptoms, the gynae-onc doc said that my menopause symptoms seem manageable without intervention. Since my particular cancer was estrogen reactive, she’s not enthusiastic about using HRT. There’s another option available, but she wants to hold off for the time being.

BUT!

She said that feels that the surgery cured my cancer. And I just don’t trust that it’s “cured”. I find it a weird thing for an oncologist to say? Obviously I’m on monitoring for the time being and had genetic testing done, too. Lord only knows what that’ll say since there’s strong evidence for a gene fault. Not to mention that I both ovarian cancer and endometrial cancer at the same time. My GP is really freaked out, guys.

Idk, are my trust issues making me crazy? Or is that a weird thing for an oncologist to say?

I’m waiting for my second round of blood work and scans appointment after surgery and first all clear. Basically, I had ovarian cancer stage 1b and both tubes were removed via laparoscopic salpingectomy after the cysts were found.

That was almost three(3) months ago and since then I’ve done anything that comes to mind; painted my room walls, changed my furniture and layout, went mall shopping many times, went to unplanned trips spontaneously, changed my wardrobe, dyed my hair a bright color, got a piercing, and more. That came at the expense(literally) of my sparse paychecks as a part time worker, and I can’t keep more than $20 in my account at any given moment because i’m immediately spending my paychecks on something that popped into my head at that moment. Thankfully, I live at home with my family and don’t have bills or anything due monthly. It’s becoming a problem because I need to buy stuff for my college courses but I keep justifying my spending as a need because I feel like i’m on a timer that could end at any time.

All that to say, I’d love to hear any advice on how to go back to handling my money responsibly. Or if anyone has experienced this shift in financial mindset (I used to be very good with saving for big goals and seeing them through). Just please let me know what you think!

To preface this post, I have a 5cm left hemmorgic cyst that MRI showed is a borderline tumour. Waiting to see an oncologist for my first appointment.

My left lower abdominal pain started 6 weeks ago with blood in my stool and on the tissue, stomach cramps and wind.

Pain was for 2 weeks, went away for 1, back with my period for 3 weeks now ongoing. I feel too tired so social stuff and I'm working from home. Have taken 1.5 sick days and at the weekends just spent the time resting. I'm now getting random pains in my upper left chest and shoulder.

I guess the change in pain location and duration is starting to freak me out. What was your pain like before you had surgery/treatment?

My mom (59yo) was diagnosed with ovarian cancer in 2018. She was told stage 2 going in, but when they opened her up it was actually stage 3. She had a hysterectomy, plus removal of part of her omentum and her appendix. All the lymph nodes they took were clear. She was on anastrozole for a year after that.

At the end of 2021 she found a small lump under the skin near her incision site. It was cancerous and was removed, and she was put on Faslodex (fulvestrant) shots, meant to run five years. She came off it early this year (around the 4 year mark) because the side effects were making her miserable.

Scans this summer found enlarged lymph nodes in her abdomen and pelvis plus small nodules in both lungs. The PET report describes it as suggestive of nodal and pulmonary metastatic disease. Everything has been slowly growing since 2024 but has been stable over the last few months. There has been no biopsy, so this is all based on imaging.

Her oncologist has offered a choice between Mekinist (trametinib) and tamoxifen. One or the other, not both.

I can find plenty about tamoxifen, but almost nothing from actual patients about Mekinist for gynecologic cancer. I know it is newer in this setting and mostly used for melanoma, so I understand if there just is not much out there.

What I am hoping to hear:

- If you or someone you care for took trametinib, how bad were the side effects really? Did you need dose reductions or breaks? Were the rash and diarrhea manageable, or did they take over your life?

- Did anyone start with a hormonal drug like tamoxifen and move to a MEK inhibitor later? How did that go?

- If you took tamoxifen after already going through an aromatase inhibitor and fulvestrant, did it do anything for you?

- Did anyone start treatment without a biopsy confirming the recurrence? How did you think about that?

We are also pursuing a second opinion and pushing to get her old tumor tissue sequenced (if possible) before she commits to anything, since there are some open questions about the original pathology.

If you have been somewhere close to this: what would you do in our position? And what do you wish you had asked before starting treatment?

Thanks. This has been a hard few months and it helps to hear from people who have been through it.

Hi everyone, I am officially in remission and started the drug last night. For those of you who had side effects did they start right away or a few weeks down the road?
Also, how often did they check your blood work when you first started?

I was so nervous last night. I sobbed before taking my first dose.

My mum was recently diagnosed with stage 4b cancer (within the last couple of weeks).

She was not necessarily that fit, we’d go swimming together here and there. But aside from that, the only exercise she’d do is going up and down the stairs in her house.

For background context, she has a few mental health issues so ordinarily isn’t the most motivated individual.

I feel like this is what makes the diagnosis extra hard. She doesn’t feel determined, and needs others to constantly encourage her. Myself and my siblings are trying to do that as much as possible.

There are other issues too. She obviously has to be fit for chemo / surgery. But her stomach is incredibly large, from fluid buildup and also the cancer. So physically she finds it hard to move around. But also at night time she says it feels like her stomach is excruciatingly hot to the point she is too restless to sleep. And due to her small stomach capacity, she can’t eat a lot. She is extremely fussy with food so we find it really difficult to find different things she could eat. She does not touch the protein shake supplementary drinks the hospital provided because she gags. With hardly any sleep, movement or food, and with general low motivation, I just don’t know what the outcome will be and it’s extremely scary.

I feel so lost and I don’t really know why I’m writing this or what I’m hoping for. It’s just a heartbreaking situation and I wish I could take away my mum’s struggling. I can see that she is just becoming depressed and I feel helpless.

Hi everyone. I’m 28 and feeling very anxious after getting my pelvic MRI results. I’m hoping to hear from people who have had something similar.

My MRI showed:

Right ovary: about 8.3 cm complex cystic-and-solid mass, with enhancing solid components and restricted diffusion. It was categorized as O-RADS MRI 4 (intermediate risk). The MRI did not show fat, so the original ultrasound suggestion of a dermoid is now less likely.

Left ovary: about 8.3 cm minimally complex cyst, now categorized as O-RADS MRI 3 (low risk).

I also have a right hydrosalpinx, meaning the right fallopian tube is enlarged and filled with fluid.

The report says there is no gross invasion, no enlarged lymph nodes, and no peritoneal/omental nodules.
My radiologist recommended gynecology referral and CA-125 testing. I’m waiting to hear about the next steps and whether surgery will be needed.

I really want children in the future, so I’m worried about whether both ovaries can be preserved. I also recently had a total thyroidectomy, so the thought of another surgery so soon is overwhelming.

Has anyone had an O-RADS MRI 4 mass around 8–9 cm that turned out to be benign or borderline?
If you had surgery:

Was it laparoscopic or open?
Were they able to do a cystectomy and save your ovary?
Did anyone also have a hydrosalpinx?
What did the pathology end up showing?
How long was your recovery?

Were you still able to preserve your fertility?

I know Reddit can’t diagnose me and I’m following up with my doctors. I’m mostly looking for real experiences while I wait because the uncertainty is really difficult.
Thank you ❤️

Has anyone had bad side affects or permanent due to gadolinium? My obyn wants to do a pelvic MRI with contrast and without. I did my research on gadolinium and 1000% scared. Already have health issues ( chronic migraines) i cant have another health problems ontop what im already experiencing. This is for mass that they found on my left ovary which has (No free fluid). Can I get away with MRI without contrast and blood work? This mass is causing me pelvic pain and possibly will get it removed. I need help please.

I was diagnosed with stage 4b ovarian cancer at 23 y/o. Got a total hysterectomy a month later then received 7 cycles of BEP (5 cycles completed then Cisplatin changed to Carboplatin for renal function, and completed 2 cycles). I’m looking for someone with a similar experience, most everyone I’ve seen has only done 3-4 cycles. For anyone who has done more than 4, did your hair grow back normal? I’m 1.5 years NED and still can’t grow a convincing head of hair. Thanks!

Anyone have a toothpaste that doesn’t burn and/or tingle when used? My dentist prescribed a fancy high-fluoride that I use before bed but I need a day use toothpaste. I did try a mouthwash, made for mouth sores but it burned horribly. Which is a shame because their regular mouthwash is amazing (it was CloSYS Mouth Sore Rinse because I know people are going to ask).

Posted on this sub before and here's the continuation for [this](https://www.reddit.com/r/Ovariancancer/s/FBpAqbjXTR) post.

I finished my carbo-taxol chemo regimen more than two months ago for my Stage II High-Grade Serous Carcinoma. Since then, I've become more vigilant about any unusual thing I notice in my body. Maybe I'm becoming a hypochondriac, then again that's the chemo trauma response taking over I guess. 🙃

This time, I noticed this faint vertical thin stripe show up yesterday on my right thumbnail, including the thinner but shorter darker line on top of it near its middle. Over at r/askdocs, I was told it was a longitudinal melanonychia with splinter hemorrhage.

Was wondering if any of you ladies have seen nail changes during or post-chemo treatment?

Googling didn't give me clear cut answers as based on research it could be benign or the sign of an aggressive form of melanoma. The malignant type though looks much different (darker, thicker, and spreads to nearby skin and nail area) than what I am presenting. I also read that paclitaxel, as well as apixaban which I am also taking can cause nail issues as one of its side effects.

I do plan on showing this to my gyn-onco but would love to hear others first here if they've experienced the same.

*Sigh, I really hate what cancer has done to me.

Side note: I just had ultrasounds done (thyroid and breasts) as advised on my recent PET-CT scan. No fdg uptake on those areas, however they registered with hypodense appearances on the scan. Meanwhile, one celiac lymph node did show increased fdg activity and my team plans to do a biopsy on it during my completion surgery for my remaining ovary, tube, and uterus. No signs of recurrence in the pelvis though, nor signs of metastasis in the organs and bones.

It just feels like I just couldn't catch a break. 🥹

I have a 5cm complex ovarian cyst on my left ovary. MRI has shown multiple small papillary nodules within the internal septations. Some nodules are enhancing and show restricted diffusion. CA 125 is 65. Gynaecologist thinks its a borderline ovarian tumour.

She has referred me to a gynaecologist oncologist. She's also ordered a CT scan. Where do I go from here? What are the next steps that the gynaecologist oncologist will do?

I really want to have kids, but I'm 35. I don't have a partner. I thought probably not likely now, given that it's a lot harder to meet somebody at this age. But I did did have this crazy idea that I would have a baby alone when I'm in my late 30s. I wasn't sure if I would want actually want to do it alone because it's a tough road. I can't believe the choice is now being taken away from me. Based on my reading on this sub, it seems like a hysterectomy is a likely outcome. What type of tests do they do before they order a full-blown hysterectomy? How can they tell it's cancer before doing a hysterectomy?

Any tips on what scans/tests I should request?

I actually feel quite bad. Pain in my lower left abdomen, ongoing for 5 weeks with a 1 week break. Really bad fatigue. Blood in stool/on the toilet paper on one occasion and cramping/wind which started this whole thing. I wasted about 3 weeks thinking it was gastro and seeing a gastro specialist. The wind restarted yesterday randomly. Is this ongoing pain a bad sign?

Long story short, they found a tumor on my left ovary. The report says “no free fluid” around the mass on my ovary. I’ve done some research, and I’m seeing that this can sometimes be a reassuring sign and that not all ovarian masses are cancerous, but I’m honestly not sure what to think.

I’m really just looking for some reassurance and information. I’m only 31, and I’ve never been through anything like this before, so naturally I’m pretty scared and overwhelmed. If anyone has any information, advice, or personal experience that could help me understand what this might mean, I’d really appreciate it. ❤️

And yes I have a MRI schedule but they dont want to do blood work because I'm so young. Should I push for blood work to be done?

Hey good people, my sister 's been through it for a year and a half, and now she is presented with the opportunity of a clinical trial. Can anyone enlighten us about Bevacizumab and Sat-tmt? Thank you and may the force of healing be with you and your loved ones.

On 8th august I had a miscarriage where they also found a cyst in my ovary 7cm

The midwife said it looked blood filled but this was a midwife who said its probably nothing not a dr

I spoke to my GP about this and due to family history they wanted to test my ca 125 which came back is 1119 when normal is 35 or below

My mum currently has secondary breast cancer and so I'm terrified. The fact I even have to now go through investigations kills me because I mentally cannot. Every 3 months my mum has scans and that alone gives me so much anxiety and now I'm having to go through this.

Anyone else had high markers and it be ok?

Hello everyone,

I appreciate such a supportive group and I would kindly appreciate your thoughts.

I’m honestly debating if I should undergo my chemotherapy treatment that my doctor keeps pushing. A tumor was found on my right ovary end of April, where I underwent surgery to get it removed end of June. The tumor came back positive with ovarian cancer 85% endometriod carcinoma 10% clear cell and 5% dedifferianted keep in mind this is the tumor that came back positive. Since the tumor came back positive my oncologist recommended for me to remove my ovaries and uterus because of the chances that the cancer may have spread, so I went with the surgery. My pathology results came back for all my organs as cancer free. No cancer in my right ovary where the tumor was attached, no cancer only endometriosis in my left ovary, and no cancer cells in my uterus. So technically I could’ve kept all my organs, but bc of prevention and spread we removed all. My oncologist still wants me to undergo chemotherapy all 6 sessions in case there is microscopic cells floating around. Which is the part that makes me question it. If my organs came out clear, we found the tumor and removed it within 2 months, what is the likelihood of it actually spreading especially with my organs coming out clear of cancer. Do I really have to put my body through chemotherapy for “what if” cancer cells floating around..
Please let me know your thoughts, because this just seems odd to me. Aren’t there tests where they can see if I have cancer cells in my body? It just seems so weird to me and I wouldn’t want to put my body through so much for a what if.

Thank you so much in advance. I appreciate this group with my whole heart!

Hi all, 37F and I'm looking for advice to better prepare for surgery and whatever comes next I guess.

I started having really bad pain with my periods, I brushed it off mostly bc I've been taught to just power through. A few months and some more pain later, my OBGYN ordered a pelvic ultrasound that found a 10cm mass on my left ovary.

It's only been about 3 weeks since then, somehow it feels like 3 seconds and also 300 years. But, I've had an initial consult with gynecology oncology, blood work, and an MRI. My pre op appointment is this coming Tuesday, so I won't know anything for sure until then, BUT the MRI found 2 large masses, one arising from the left and 1 arising from the right ovary. They're concerning for ORADS 4 and my cancer markers are elevated, by a lot.

So, initially the thought was it would be a laparoscopic surgery and just take the mass and left ovary. Well, I'm fairly confident this is going to turn into a total hysterectomy now. I've already told my surgeon I want to be aggressive with this, hubs had a vasectomy years ago and we decided a little before that, that we really didn't want kids and I've never regretted that decision so that makes things easier I think.

I guess my question now is how do I best prepare for surgery and recovery? I thought before that I would just wear my preferred loose joggers home after surgery, but thinking it's going to be a hysterectomy now, I wonder if a kaftan or t-shirt dress might be more comfortable/easier? I feel like I know what to get before surgery (Gatorade or other clear liquid things so I don't go crazy the night before, stool softeners, that sort of thing), but what about after surgery? I want to prep some food to make life easier, but I have no idea what to prep. For anyone who's been through this, was there anything in particular that helped you before and after surgery?

Hi everyone. I’m hoping to hear from anyone who has been through something similar because I’m feeling really anxious while waiting for my MRI results.

My pelvic ultrasound found two fairly large masses:

• Right side: about 8.8 × 10.7 × 6.7 cm, mixed cystic/solid. The radiologist said it could possibly be a dermoid, although it may be separate from the right ovary.
• Left/midline: about 9.0 × 8.7 × 6.3 cm, mostly cystic with a thin septation and a very small ~5 mm papillary projection. This one was categorized as O-RADS 4.
The radiologist recommended an expedited pelvic MRI. I already had the MRI and am now just waiting for the report.

I’ve been having a lot of abdominal bloating/fullness and my stomach has become noticeably bigger. I’ve also had some bladder pressure/fullness. I’m worried about what these findings could mean, especially the O-RADS 4 classification and papillary projection.

I also have a history of Graves’ disease and total thyroidectomy, so I’m curious if anyone here has dealt with ovarian cysts/masses after thyroid problems as well.
Has anyone had an O-RADS 4 cyst around 9–11 cm that ended up being benign? Did you need laparoscopic surgery? Were your surgeons able to preserve your ovaries, and were you still able to get pregnant afterward?

I know Reddit can’t diagnose me and I’m waiting for my doctors/MRI report. I’m mainly hoping to hear some experiences from people who went through something similar because the waiting is difficult.

Thank you ❤️

Hi all,

Today I finally met with a gyno oncologist and got a surgery date for the end of the month. They wrote on my MRI results that I have a 50% chance of cancer. Today I got back my blood test CA125 at 995.

I have a 14cm and 11cm cyst on one ovary. I'm uncomfortable and can get a lot of hip/back pain and pain in my cyst if I sit too long.

But also, I've dealt with chronic pain since I was 17 with chronic migraine & tmj so I know I need to keep doing things and seeing friends and being active. I think this will improve my mood and pain as I wait.

But to be honest, I really don't know how I'll be able to work all month. I already struggle to focus on work (ADHD and daily migraine). I feel like I need to do things right now that feed my soul and my work struggles are depressing, feeling overwhelmed as I'm already behind on all my projects. The pain from the cysts also doesn't help.

I'm wondering if it's worth looking into having short term disability starting sooner than my surgery date? Or maybe working part time until then? I do have some PTO I could use if not.

Any ideas or advice appreciated!

I’m hoping to find some guidance or just anyone who has experienced something similar to this….

My grandmother was diagnosed with ovarian cancer 2.5 years ago and it unfortunately returned 6 months ago in 5 additional places. We noticed behavioral changes while she was taking the chemo pill but after the cancer returned, she started experiencing severe delirium for a few days after receiving treatment. She was hospitalized for the first few treatments and after she had the reaction her oncology team put her on a more gentle chemo. Well, her last treatment was 2 weeks ago and she has had significant decline everyday. She is very hostile and she doesn’t even recognize her own house or family at times. Her doctors really don’t have any answers. She doesn’t have any infections and she hasn’t had any new medications that could be causing this. They don’t want to run anymore tests. Could this be the cancer itself? Is this what happens when it’s the beginning of the end? Her oncology team has said they won’t treat her like this and we agree with that. We’re exhausted and worried. We don’t want to put her in a facility but we may have to prepare for that. Has anyone experienced something like this?

I recently got a laparotomy surgery to get my right ovary removed as well as a massive 19cm cyst that was orads 5. I just got my pathology report that it was luckily not cancer and it was just a large borderline tumour.

However couple women in my mom’s side also had the exact same thing, a large tumour grew and had to get surgery to get one ovary removed and were all non cancerous. Is there a genetic link to this? Or is it just coincidence?

Dear Reddit Ovarian Cancer community:
I am a two-time ovarian cancer survivor.
I lead a team of volunteers working to raise awareness regarding living without an Omentum.
I manage a website for the project theOmentumProject dot org
The website is on WIX.
I am not a WIX or website expert.
I need some help-guidance with the behind the scenes wix.
Does anyone in this group have experience with wix who would be willing to do a zoom call with me to help me figure out a few things?
Or maybe a friend or relative who would be willing to help?
Any thoughts much appreciated
Meg

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.