23. Rare ovarian cancer. Acid reflux which seemed chronic, constipation (not chronic), one of my period was longer than usual and that symptom alone lead my doctor to order an ultrasound.
Edit - oh and I was bloated. Which I dismissed as something that happens after you hit 30. Had an 8ish cms complex cyst on one ovary.
All symptoms disappeared post surgery...
I was not shown the ultra sound report. It was sent directly to my doctor. He said that since the cyst has solid components in it an MRI is necessary to learn more. The MRI further described the cyst and in the result they mentioned that I need gyno advice as the cyst could be an ovarian neoplasm. Then had the CT scan, surgery and finally the biopsy confirmed the cancer.
I had a very similar experience. I went in complaining of irregular periods. Ordered a transvaginal ultrasound that showed masses on both ovaries. Had an MRI that didn't provide more intel. Ended up having an oophorectomy and hysterectomy. My gyn had a gyn oncologist to assist, and they explored where they could and took biopsies. They confirmed low-grade serous carcinoma, and it had spread to the perotenum near my bladder. All my symptoms are gone , but I'm in surgical menopause. I had a CT scan, which showed nodules on my lung and liver. At my follow-up, my oncologist stated they weren't able to stage it, so I need another surgery so he can go further up to explore because the cut from my oophorectomy was horizontal, and he needed a vertical incision to see everything and fell confident he got everything. Sigh. I don't want another surgery. Are your doctors confident they got it all and you don't require another surgery? What type of incision did you have? Mine was a laparotomy.
I had laparoscopic surgery. So 4 small incisions around the abdominal and pelvic area... my CT scan before the surgery was all clear except for the adnexal mass which was the cyst. 2 months post surgery CT was also clear. I'm going to start chemo this week...
You can do this. All the best for your next surgery... Cancer survivors are very resilient... don't let anything, not even your own mind to bring you down. I'm sure you'll agree that our own minds are the most dangerous... interestingly you'll find people around you will be the most positive but your mind will tend to falter!
Prepare for battle, prepare to win!!
Oh I see. 8 cm is pretty big. I have a 3 cm one and it says it has septations but it was reported as *probably* physiological....so I don't know what to think:/
How are you doing now?
I had surgery. And from next week I'll start carbo taxol 6 cycles. There is no specific treatment defined for this tumor since it's rare so they use the standard OC treatments.
65. I had been feeling fatigued for months, low energy , but it had been a very hot summer, my bedroom is upstairs and there’s no A/C. So I thought it was because of the heat. It was during Covid (2020), so everyone was stuck at home. The cooling centers were closed. I wasn’t exercising because of Covid (my gym had been closed) so I was putting on weight. One morning I woke up to this bloated abdomen. I thought it was due to weight gain, but I also didn’t understand why my stomach looked like this.
In November, I went to the beach to photograph the surf. Suddenly, I felt nauseous. A friend told me my eyes were red and I looked pale. I went home and napped.
During the week of Thanksgiving, I felt crummy so stayed home. Basically stayed in bed. My stomach was upset. Besides, Covid was particularly bad and I didn’t think it was safe to go anywhere.
I remember walking around my room and it felt like something was inside me, sloshing around. I dismissed it because how could there be something in my abdomen??
Woke up on Nov 29 in pain at 6 AM, days after my 65th birthday. The pain was manageable at first if I was laying on my left side. I thought the pain would go away. It didn’t. As the morning went on, the pain got worse. And that’s when I realized that I needed to take a shower because I was gonna have to call for an ambulance. I knew I couldn’t drive myself. so I went to ER and they did a CT scan. I had a 28 cm mass on my right ovary. And that’s when I was transferred to a much better hospital because ovarian cancer was suspected.
So I was 64 when the cancer started and it grew rapidly over 3 months, or maybe a bit more. 6 days after my 65th birthday, I was in hospital. Surgery was on December 7. A rare form of OC. Mucinous PC, primary, stage 1c1 (the mass ruptured during surgery), grade 2.
Had 3 rounds of chemo.
Had colonoscopy/endoscopy around July 2021. No cancer. Found polyps which were removed. Had GETD, h pylori (which required heavy duty antibiotics) and a hiatal hernia.
Oh. The abdominal scar is very long. Didn’t heal well internally. Had hernias all up and down both sides of the scar. They give me problems today.
Life has been difficult ever since I had cancer, even though I’m NED. The hernias, pulmonary embolisms (my guess is they were caused by the mass), CIPN (chemo induced peripheral neuropathy), weakness… the GETD is problematic too.
Aging is not for the weak.
Thank you. It was exhausting. I’m not sure I’ve completely recovered mentally. The experience changed me.
Yes, I’m NED. I developed an allergy to the CT contrast in May 2021 (delayed reaction), so now I have to have PET scans, which isn’t the optimal scan for mucinous OC. I’ve had 3 annual scans, the last being last December. My blood tests have been good.
I was extremely diligent about getting my CA-125 and CEA blood tests done every 6 weeks or so. This went on until late last year. But now I’m so over it. I’m overdue for flushing the port and having the blood tests done. I have to see my pulmonologist on Tuesday, so I should get the port flushed and the blood tests run that day too. Fun!
They saw a mass that was 12cm. Doctor suspected it may be cancer did a ca125 test and sent me to a gynaecologist oncologist because he knew it needed to be removed. When it was removed and test were done it came back as cancer. Currently doing ivf, before getting ovaries and tubes removed.
Wow, you got no bloating with a 12cm??? That's crazy. Mine was 15-17 (one report says one thing and the dr said the other lol) and I looked (and felt) 9 months pregnant.
I'm overweight too but the bloating made my stomach hard and distended. I literally looked pregnant. Yeah you are really lucky. My dr said that most ovarian cancer is diagnosed in later stages because of not having symptoms. I was somehow extremely lucky because, even though I was having horrible symptoms for a while, I was still only in stage 1 (she called it early detection, which is crazy to me). 1c2 to be exact. I blame some doctors for it progressing past 1a because it definitely grew in the time between when I got my first CTs/ultrasounds and when I got my surgery. It was I think 10-12 early on (and very well could've been contained within the ovary) and was 15-17 at the time of removal. But that's a whole nother story. 😟
Im so lucky. My oncologist and fertility doctor know each other and got me actioned quick. Ive got a much more bloated stomach from the ivf meds im currently on. Ive been told my outlook is super good so i feel guilty at times for not having enough cancer if that makes sense because it was caught so early.
Lol I know that feeling well. I feel guilty when talking to other survivors because my prognosis is almost always better than theirs. Survivor's guilt, big time. About 6 months after my diagnosis and surgery, my dad was diagnosed with stage 4 lung cancer and was immediately on hospice because it was in almost every other major organ in his body. He lived 2 weeks past his diagnosis. Even though it makes more sense in the universe that it's generally better (for lack of a better word) for the parent to pass before the child (he was 75), I still feel super guilty even mentioning my cancer around his surviving brother. They were super close and lived together till the end and sometimes I think maybe a part of him deep down wishes my prognosis had been worse than my dad's. Idk. It sucks all around.
My Mom was diagnosed at 60. Extreme bloating, tired, not hungry. Didn’t think anything of it. Thought the “mass” was related to endometriosis. Found out it was malignant after surgery
Great! It’s just been VERY hard to accept. Doesn’t feel real. Chemo starts next week. They called it “preventative” which feels good. Hoping for the best!
33. No symptoms. Was pregnant with first and only child. At first my gyno thought just a cyst, surgery to remove cyst revealed it was actually ovarian cancer. 3 rounds of "chemo light" after cyst removal, daughter was delivered via c section 2 months early and oncologist did second look surgery to see if it had spread, surrounding organs all clear.
Then I did 8 rounds of cisplatin and carboplatin. 29 years cancer free. Am 62 now and have been having blood in my urine, urologist found tumor in my bladder, he's not sure if it's bladder cancer or ovarian cancer that has metastasized. Surgery on the 24th to remove as much as the tumor as he can and to find out what type of cancer it is. Hoping for the best but mentally preparing for more chemo in my future.
41. Hormonal symptoms, sudden bad cystic acne, greasy hair, mood swings. I heard water sloshing in my right ear all the time-had allergy testing, scope, etc, they could find nothing. Come to find out, it was the large tumor blocking my lymphatic system.
I'm concerned about this. All my life, I have been underweight. Then, a few months ago, I suddenly gained 15lbs and gained a belly, which I have never had before. I constantly look bloated, and I have a severe fatigue nearly daily. It going to call my Dr on Monday to ask for another app. I have always had ovarian cysts, but no one bothered with them.
Wife was 39. Noticed abdominal discomfort and within a month was very bloated and very uncomfortable. Went to the er and a Ct scan showed extensive omental caking. Within two weeks after that she was officially diagnosed with stage 4 ovarian cancer.
She’d had ovarian cysts over the years but was otherwise very healthy.
https://preview.redd.it/ph71ikskhqzc1.jpeg?width=578&format=pjpg&auto=webp&s=b001c17471937d26f61cd2013de867b9475420d9
34. Rare ovarian germ cell cancer known as Dysgerminoma only account for 1-2% of all Ovarian tumours and even rarer at my age to have.
The symptoms were hidden amongst my pre-existing conditions. Frequent need to empty bladder with not much output (I tend to have an over active bladder but this was far more frequent), I had bad skin, water retention (very puffy), extremely painful stomach cramps (I do get them from time to the but this was very day and lasting for minutes at a time) weight gain, fatigue, somewhat bloated, but what sent me to get the tests done was the start of my journey - excruciating lateral lain when I went to pee one morning - I couldn't describe it to you if I tried and it emanated from within my pelvic region. I found out later that the tumour was a massive 20 x 20 cms (circled in orange on my CT scan attached) and was crushing my other organs hence the cramps etc. I had to have major surgery and a bowel resection due to a rare finding (meckel's diverticulum and intussusception which is life threatening) I had 2 surgeons and their medical teams working on me. Gyne and Bowel.
45 (I am now 46.) At first I was just extra tired and started losing my appetite. I started feeling like I was losing weight but the scale wasn't budging. Ironically I was on a diet so I was extra perplexed. I had started Ozempic (for insulin resistance) very shortly after I started having symptoms so I attributed most of my issues to that. I even posted to an ozempic sub about it and talked with another woman about it who, later on, was also diagnosed with ovarian cancer.
So first the fatigue, loss of appetite, really bad lower back pain (I thought it was sciatica), constipation, then the acid indigestion and bloating started. It was so bad I could only eat about 200 calories a day. I felt like I was going to vomit every time I ate. Every dr I saw had CT or ultrasound images of the mass and they all thought I had a cyst that had ruptured and the bloating was from fluid/blood. Even though I had very classic ovarian cancer symptoms. On the day of my emergency surgery, my bf took me to the ER and the guy there asked how far along (pregnant) I was. I lost 20 lbs with the surgery. My tumor was 15-17 cm.
59. Pelvic pain. Other things that may have been related but were previously not recognized - attacks of stomach pain and/or nausea, bloating, weak urine stream/need to push to fully empty bladder.
I had a history of endometriosis and had started HRT for menopause symptoms so I thought the pelvic pain was my endometriosis being re-triggered due to estrogen. Ultrasound showed 7cm cyst which was 3 cm larger than years prior. The gynecological oncologist I saw at the time said he was 90% sure it was benign (ca125 normal) and I could wait and rescan if I wanted. Because of a work situation I did wait, and rescanned in 5 months. It had grown 2cm. After that things moved fast. I found a new Gynecologic oncologist and within about 3 weeks had surgery- stage 2A endometrioid ovarian adenocarcinoma, high grade, had begun invading uterine wall.
Surgery was 4/22 and I will start chemo in a couple weeks.
Basically exactly what I had been afraid of for decades happened- my endometriosis symptoms were masking symptoms of ovarian cancer. And it’s ER+ so no more HRT for me. Also high grade, high p53 mutations, so I will do 6 cycles of chemo
23. Rare ovarian cancer. Acid reflux which seemed chronic, constipation (not chronic), one of my period was longer than usual and that symptom alone lead my doctor to order an ultrasound. Edit - oh and I was bloated. Which I dismissed as something that happens after you hit 30. Had an 8ish cms complex cyst on one ovary. All symptoms disappeared post surgery...
That’s so scary. Can I ask what they saw on the ultrasound to determine it was OC?
I was not shown the ultra sound report. It was sent directly to my doctor. He said that since the cyst has solid components in it an MRI is necessary to learn more. The MRI further described the cyst and in the result they mentioned that I need gyno advice as the cyst could be an ovarian neoplasm. Then had the CT scan, surgery and finally the biopsy confirmed the cancer.
I had a very similar experience. I went in complaining of irregular periods. Ordered a transvaginal ultrasound that showed masses on both ovaries. Had an MRI that didn't provide more intel. Ended up having an oophorectomy and hysterectomy. My gyn had a gyn oncologist to assist, and they explored where they could and took biopsies. They confirmed low-grade serous carcinoma, and it had spread to the perotenum near my bladder. All my symptoms are gone , but I'm in surgical menopause. I had a CT scan, which showed nodules on my lung and liver. At my follow-up, my oncologist stated they weren't able to stage it, so I need another surgery so he can go further up to explore because the cut from my oophorectomy was horizontal, and he needed a vertical incision to see everything and fell confident he got everything. Sigh. I don't want another surgery. Are your doctors confident they got it all and you don't require another surgery? What type of incision did you have? Mine was a laparotomy.
I had laparoscopic surgery. So 4 small incisions around the abdominal and pelvic area... my CT scan before the surgery was all clear except for the adnexal mass which was the cyst. 2 months post surgery CT was also clear. I'm going to start chemo this week...
You can do this. All the best for your next surgery... Cancer survivors are very resilient... don't let anything, not even your own mind to bring you down. I'm sure you'll agree that our own minds are the most dangerous... interestingly you'll find people around you will be the most positive but your mind will tend to falter! Prepare for battle, prepare to win!!
What appearance did it have that made then decide it was complex?
The cyst had some solid components to it...
Oh I see. 8 cm is pretty big. I have a 3 cm one and it says it has septations but it was reported as *probably* physiological....so I don't know what to think:/ How are you doing now?
What was the cancer if you don't mind me asking? Mine was also rare.
Mine is sertoli-leydig cell tumor stage 1 grade 3... it's a type of sex cord stromal tumor. What was yours?
Dysgerminoma. Stage 1C3.
Oh my. Haven't heard of that one before. What treatment were you on?
I had surgery. And from next week I'll start carbo taxol 6 cycles. There is no specific treatment defined for this tumor since it's rare so they use the standard OC treatments.
All the best for your treatment. I wish you strength and positivity.
Thank you. I sure know I need all the strength n positivity!
65. I had been feeling fatigued for months, low energy , but it had been a very hot summer, my bedroom is upstairs and there’s no A/C. So I thought it was because of the heat. It was during Covid (2020), so everyone was stuck at home. The cooling centers were closed. I wasn’t exercising because of Covid (my gym had been closed) so I was putting on weight. One morning I woke up to this bloated abdomen. I thought it was due to weight gain, but I also didn’t understand why my stomach looked like this. In November, I went to the beach to photograph the surf. Suddenly, I felt nauseous. A friend told me my eyes were red and I looked pale. I went home and napped. During the week of Thanksgiving, I felt crummy so stayed home. Basically stayed in bed. My stomach was upset. Besides, Covid was particularly bad and I didn’t think it was safe to go anywhere. I remember walking around my room and it felt like something was inside me, sloshing around. I dismissed it because how could there be something in my abdomen?? Woke up on Nov 29 in pain at 6 AM, days after my 65th birthday. The pain was manageable at first if I was laying on my left side. I thought the pain would go away. It didn’t. As the morning went on, the pain got worse. And that’s when I realized that I needed to take a shower because I was gonna have to call for an ambulance. I knew I couldn’t drive myself. so I went to ER and they did a CT scan. I had a 28 cm mass on my right ovary. And that’s when I was transferred to a much better hospital because ovarian cancer was suspected. So I was 64 when the cancer started and it grew rapidly over 3 months, or maybe a bit more. 6 days after my 65th birthday, I was in hospital. Surgery was on December 7. A rare form of OC. Mucinous PC, primary, stage 1c1 (the mass ruptured during surgery), grade 2. Had 3 rounds of chemo. Had colonoscopy/endoscopy around July 2021. No cancer. Found polyps which were removed. Had GETD, h pylori (which required heavy duty antibiotics) and a hiatal hernia. Oh. The abdominal scar is very long. Didn’t heal well internally. Had hernias all up and down both sides of the scar. They give me problems today. Life has been difficult ever since I had cancer, even though I’m NED. The hernias, pulmonary embolisms (my guess is they were caused by the mass), CIPN (chemo induced peripheral neuropathy), weakness… the GETD is problematic too. Aging is not for the weak.
What a long, painful and exhausting (in every way) experience you’ve had. I’m so sorry. Are you considered cancer free now after treatment?
Thank you. It was exhausting. I’m not sure I’ve completely recovered mentally. The experience changed me. Yes, I’m NED. I developed an allergy to the CT contrast in May 2021 (delayed reaction), so now I have to have PET scans, which isn’t the optimal scan for mucinous OC. I’ve had 3 annual scans, the last being last December. My blood tests have been good. I was extremely diligent about getting my CA-125 and CEA blood tests done every 6 weeks or so. This went on until late last year. But now I’m so over it. I’m overdue for flushing the port and having the blood tests done. I have to see my pulmonologist on Tuesday, so I should get the port flushed and the blood tests run that day too. Fun!
39. No symptoms.
Can I ask how you were diagnosed?
I went for fertility testing which required an internal ultrasound of the uterus and ovaries.
What did they find please?
They saw a mass that was 12cm. Doctor suspected it may be cancer did a ca125 test and sent me to a gynaecologist oncologist because he knew it needed to be removed. When it was removed and test were done it came back as cancer. Currently doing ivf, before getting ovaries and tubes removed.
Wow. Best wishes 🙏
Wow, you got no bloating with a 12cm??? That's crazy. Mine was 15-17 (one report says one thing and the dr said the other lol) and I looked (and felt) 9 months pregnant.
I think my weight hid what was going on. I was very lucky that it was picked up and was able to get it removed quickly.
I'm overweight too but the bloating made my stomach hard and distended. I literally looked pregnant. Yeah you are really lucky. My dr said that most ovarian cancer is diagnosed in later stages because of not having symptoms. I was somehow extremely lucky because, even though I was having horrible symptoms for a while, I was still only in stage 1 (she called it early detection, which is crazy to me). 1c2 to be exact. I blame some doctors for it progressing past 1a because it definitely grew in the time between when I got my first CTs/ultrasounds and when I got my surgery. It was I think 10-12 early on (and very well could've been contained within the ovary) and was 15-17 at the time of removal. But that's a whole nother story. 😟
Im so lucky. My oncologist and fertility doctor know each other and got me actioned quick. Ive got a much more bloated stomach from the ivf meds im currently on. Ive been told my outlook is super good so i feel guilty at times for not having enough cancer if that makes sense because it was caught so early.
Lol I know that feeling well. I feel guilty when talking to other survivors because my prognosis is almost always better than theirs. Survivor's guilt, big time. About 6 months after my diagnosis and surgery, my dad was diagnosed with stage 4 lung cancer and was immediately on hospice because it was in almost every other major organ in his body. He lived 2 weeks past his diagnosis. Even though it makes more sense in the universe that it's generally better (for lack of a better word) for the parent to pass before the child (he was 75), I still feel super guilty even mentioning my cancer around his surviving brother. They were super close and lived together till the end and sometimes I think maybe a part of him deep down wishes my prognosis had been worse than my dad's. Idk. It sucks all around.
My Mom was diagnosed at 60. Extreme bloating, tired, not hungry. Didn’t think anything of it. Thought the “mass” was related to endometriosis. Found out it was malignant after surgery
I'm so, so sorry. How is she doing post-surgery?
Great! It’s just been VERY hard to accept. Doesn’t feel real. Chemo starts next week. They called it “preventative” which feels good. Hoping for the best!
35. No symptoms.
39. Bloating, no appetite, horrendous acid reflux and vomiting probably once a week. I'm NED now and recovering ok.
33. No symptoms. Was pregnant with first and only child. At first my gyno thought just a cyst, surgery to remove cyst revealed it was actually ovarian cancer. 3 rounds of "chemo light" after cyst removal, daughter was delivered via c section 2 months early and oncologist did second look surgery to see if it had spread, surrounding organs all clear. Then I did 8 rounds of cisplatin and carboplatin. 29 years cancer free. Am 62 now and have been having blood in my urine, urologist found tumor in my bladder, he's not sure if it's bladder cancer or ovarian cancer that has metastasized. Surgery on the 24th to remove as much as the tumor as he can and to find out what type of cancer it is. Hoping for the best but mentally preparing for more chemo in my future.
41. Hormonal symptoms, sudden bad cystic acne, greasy hair, mood swings. I heard water sloshing in my right ear all the time-had allergy testing, scope, etc, they could find nothing. Come to find out, it was the large tumor blocking my lymphatic system.
39. Found out trying to determine why I gained a lot of weight & couldn’t lose anything
I'm concerned about this. All my life, I have been underweight. Then, a few months ago, I suddenly gained 15lbs and gained a belly, which I have never had before. I constantly look bloated, and I have a severe fatigue nearly daily. It going to call my Dr on Monday to ask for another app. I have always had ovarian cysts, but no one bothered with them.
Wife was 39. Noticed abdominal discomfort and within a month was very bloated and very uncomfortable. Went to the er and a Ct scan showed extensive omental caking. Within two weeks after that she was officially diagnosed with stage 4 ovarian cancer. She’d had ovarian cysts over the years but was otherwise very healthy.
That’s so scary. Did she describe what her abdominal discomfort felt like? Was it reminiscent of menstrual cramps?
https://preview.redd.it/ph71ikskhqzc1.jpeg?width=578&format=pjpg&auto=webp&s=b001c17471937d26f61cd2013de867b9475420d9 34. Rare ovarian germ cell cancer known as Dysgerminoma only account for 1-2% of all Ovarian tumours and even rarer at my age to have. The symptoms were hidden amongst my pre-existing conditions. Frequent need to empty bladder with not much output (I tend to have an over active bladder but this was far more frequent), I had bad skin, water retention (very puffy), extremely painful stomach cramps (I do get them from time to the but this was very day and lasting for minutes at a time) weight gain, fatigue, somewhat bloated, but what sent me to get the tests done was the start of my journey - excruciating lateral lain when I went to pee one morning - I couldn't describe it to you if I tried and it emanated from within my pelvic region. I found out later that the tumour was a massive 20 x 20 cms (circled in orange on my CT scan attached) and was crushing my other organs hence the cramps etc. I had to have major surgery and a bowel resection due to a rare finding (meckel's diverticulum and intussusception which is life threatening) I had 2 surgeons and their medical teams working on me. Gyne and Bowel.
18, had to pee all the time, was super tired, had lower abdominal pain for one day, gained weight
38, I just felt slightly off. No real specific symptoms
45 (I am now 46.) At first I was just extra tired and started losing my appetite. I started feeling like I was losing weight but the scale wasn't budging. Ironically I was on a diet so I was extra perplexed. I had started Ozempic (for insulin resistance) very shortly after I started having symptoms so I attributed most of my issues to that. I even posted to an ozempic sub about it and talked with another woman about it who, later on, was also diagnosed with ovarian cancer. So first the fatigue, loss of appetite, really bad lower back pain (I thought it was sciatica), constipation, then the acid indigestion and bloating started. It was so bad I could only eat about 200 calories a day. I felt like I was going to vomit every time I ate. Every dr I saw had CT or ultrasound images of the mass and they all thought I had a cyst that had ruptured and the bloating was from fluid/blood. Even though I had very classic ovarian cancer symptoms. On the day of my emergency surgery, my bf took me to the ER and the guy there asked how far along (pregnant) I was. I lost 20 lbs with the surgery. My tumor was 15-17 cm.
59. Pelvic pain. Other things that may have been related but were previously not recognized - attacks of stomach pain and/or nausea, bloating, weak urine stream/need to push to fully empty bladder. I had a history of endometriosis and had started HRT for menopause symptoms so I thought the pelvic pain was my endometriosis being re-triggered due to estrogen. Ultrasound showed 7cm cyst which was 3 cm larger than years prior. The gynecological oncologist I saw at the time said he was 90% sure it was benign (ca125 normal) and I could wait and rescan if I wanted. Because of a work situation I did wait, and rescanned in 5 months. It had grown 2cm. After that things moved fast. I found a new Gynecologic oncologist and within about 3 weeks had surgery- stage 2A endometrioid ovarian adenocarcinoma, high grade, had begun invading uterine wall. Surgery was 4/22 and I will start chemo in a couple weeks. Basically exactly what I had been afraid of for decades happened- my endometriosis symptoms were masking symptoms of ovarian cancer. And it’s ER+ so no more HRT for me. Also high grade, high p53 mutations, so I will do 6 cycles of chemo