Endometriomas - “chocolate cysts” ? - SHARE Ovarian Can...

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Endometriomas - “chocolate cysts” ?

BeachSheller
BeachSheller
18 Replies

Hi everyone! I’m somewhat new to all of this, but I’m trying to see if anyone has had experience with cysts known as endometriosis of the ovaries or endometriomas? Aka chocolate cysts?

I went to the ER with severe abdominal cramping and nausea, where they discovered 2 large (7cm) endometriomas on both of my ovaries. I since have gotten an MRI with my gyno for a better view and the report says they are thin walled complex lesions, containing hemorrhagic or proteinaceous fluid. The right one appears septated medially and both lesions demonstrate ovarian follicular tissue. They also say there is mild mural nodularity or thickening or papillary projections. It also mentions a differential consideration of bilateral serous cystadenoma with low malignant potential.

My gyno tried to reassure me saying she thinks this has a low risk of cancer due to my age (39), but she has referred me to a gyn/oncologist to preform the surgery. I also have a history of IVF and my grandma passed away from ovarian cancer.

I just now received my ca-125 results and it’s elevated at 165. I was really hoping this would be low to make me feel better, but I’m feeling really discouraged now

The new doctor hasn’t called yet for an appointment and I’m so anxious. The cramping started about August 16th.

My main goal is to see if anyone has experience with these types of cysts? And if so what type of treatment should I expect? I’ve heard hysterectomy is an option, but that removing my ovaries at a young age is a concern too. Really any information or thoughts would be very appreciated!

18 Replies
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Papillon65

Hi, after a few weeks of excruciating pain, nightly visits to the loo and extreme swelling in pelvic area, I recently underwent surgery for a "suspicious cyst" on my right ovary..... Docs had prepared me for it being cancer.... long story short, I had a TAH, BSO, Omentum removed and peritoneal washings..... the suspicious cyst turned out to be a 20cm chocolate cyst, with evidence of endometriosis on my uterus wall..... and clear cell cancer in the other ovary.... no evidence that it has spread anywhere else. I am now so grateful for my chocolate cyst, without which OCCC wouldn't have been found at such an early stage. I hope you get the treatment you need ASAP and have a good outcome.

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BeachSheller

Hi, thank you for sharing. That’s a monster size cyst, that must have been painful. I’m glad to hear you had a good outcome. I can tell my primary doc is very concerned about cancer, but my gyno is pretty confident that choc cysts are rarely cancerous. I don’t know much about clear cell, is that a form of cyst as well? Did it show up on imagining as well or did they only discover it when they went in for the choc?

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Papillon65

Yes, v painful..... after the op, surgeon came to see me and said that she wasn't worried be a it was a chocolate cyst.... I breathed a huge sigh of relief.... Only to get a call 4 days later telling me they'd found cancer in the other ovary..... I don't think they expected that as nothing had shown up on scan.

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Papillon65

.... My CA125 was 304.

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Lizchips

The youngest person I know of that had ovarian cancer was 16, age in my book has nothing to do with it. Try to have a complete hysterectomy, push for that. CA elevated, normal is 0-30. Call onc surgeon office, see if referral went through, if yes try to set up your own appt, don't wait for them to call you. Don't be scarred I know it's hard,try not to Google they only talk badly about survival rate junk. I was diagnosed in April 2014, almost 5 in a half years ago with stage 3c clear cell ovarian cancer, one large mass the size of a football. I did chemo, yes lost my hair, I eventually shaved it, my hair was crazy long prior. I took power back by shaving it rather than watching it fall out. Only troxil paxitroxil you loose hair, carboplaten you don't. It's pretty early to know what's going on until the surgeon goes in. If you have to have chemo,it's really not a big deal,people rarely are sick, you just have to drink lots of water. If you have to have chemo there's lots of things we can help you with. So you don't get sick. Best wishes for a successful surgery. ❤❤Liz

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BeachSheller

Thank you so much for your response! I feel the same way about age, I’ve read so many stories of premenopausal women having it. I’ve called the onc office Tuesday, had the referral sent over Wednesday and Thursday (by two different doctors) and then I called in Friday and they never called back, said the nurse had to look over the documents. I will be calling again on Monday for sure. Waiting and not being able to do anything is terrible.

I am still having some random pain, it’s been about 2 weeks since my ER visit (during a hurricane evacuation to boot) and it feels like the pain is starting to radiate lower, almost like a UTI but I don’t have any other symptoms for that. I am curious if the pain from OC is similar to that of endometriosis and maybe that’s what I’m experiencing? Idk

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Lizchips

I had some low back pain, I was very tired, I could barely walk to feed my horses. It took me forever. When I laid flat on the ground on my back my stomach was higher on one side. I couldn't lay on my stomach it hurt. My cancer was on my colon. My appendix was engulfed and was huge. Dr removed all, scraped colon. Then a month later went back in to remove 15 lymph nodes, cancer found in 2. omentum and,everything I don't need. I've been lucky I see my onc,gyno, surgeon all the time.i just after hitting 5 year mark went to seeing her every 6 months. Most importantly find a Dr who listens to you, doesn't just talk in a recorder, I've waited hours to see doc, but I know she is spending much needed time explaining things to others,just as she had years ago to me. Best wishes for huge success. ❤❤Liz

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BeachSheller

Very good advice. We only have one gyn/onc within a 1 hour radius, but I’ve heard amazing things from my friends who are nurses and even reviews online. Do you mind if I ask if you had endometriosis as well?

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Lizchips

No endometriosis, it may have started that way then changed. My Dr is Dr Amy Hakim, she's in Palm Springs, CA, she's affiliated with City of Hope. I travel an hour and half to her and about 2 and half hours to city of hope. I did do IP chemo, intraperitinel chemotherapy along with IV chemo. I'm the only one in my family with this type of cancer.❤❤Liz

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Lizchips

Clear cell is the type of cancer I have did chemo and. Still here, you will be fine. ❤❤Liz

1 like
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Bahamas22

I would definitely do a complete hysterectomy If your CA is elevated and you have a family history . It’s not worth the risk. Why go through all that pain and suffering. Let them get it out before it continues to grow and spread

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Alicel

Elevated ca 125 is a concern

Follow thru

I had ovarian cancer and my initial ca score was 65

After the hysterectomy it went down to 18

And after chemo has been single digit

My mom died of ovarian cancer

There is hope

Good luck

I too have gene defect

More women are surviving

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BeachSheller
BeachSheller
in reply to Alicel

I’m so sorry to hear about you mother. Yes, I am concerned about my ca#, but I’m also reading about how women with endo always have higher than normal numbers? Did your cancer get discovered because of genetic testing, or did you hand chocolate cysts as well? Thank you for your response.

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Alicel

I had enormous ovarian cyst which was stage 3 cancer

Found by accident

Never had endometriosis

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BeachSheller
BeachSheller
in reply to Alicel

Yikes, I’m sorry to hear that, it wasn’t causing you pain? I’m

Curious how they found it by accident.

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Alicel

My internist pressed on my abdomen and felt a mass

I had gone to him for a prescription for allergy medicine

I’m lucky to be alive

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mooncatnip

Yes, only about 1% of chocolate cysts are cancer. Yes, endometriosis can make CA125 elevated. But 165?

Endometriosis is a risk factor for certain ovarian cancers (low-grade serous invasive ovarian cancer - endometrioid & clear cell) but not high-grade serous invasive ovarian cancers.

Let me tell you about my chocolate cyst. I was 43 years old. I was worried I had ovarian cancer - I went to an urgent care & requested a pelvic ultrasound along with CA125 because of prolonged lifetime estrogen exposure (1 child born when I was 36) & vague symptoms: reflux, diarrhea, bloating, urinary frequency and burning, heavy periods, loss of appetite, and finally feeling a mass in my abdomen. I am a physician, and I heard some whooshing noises like a very slow fetal heartbeat on the ultrasound. I knew something was NOT right. The radiologist who stepped in for a repeat ultrasound told me to come in the next morning before the center opened for a CT scan. It was a large chocolate cyst. I was relieved - I had learned that chocolate cysts weren't malignant. He wanted to try 1 more thing. True enough, there was blood flow to it, a sure sign of malignancy (that was the whooshing sound on ultrasound). 5 days later, the GynOnc opened me up sternum to pubic bone. Cancer was on both ovaries, tubes, some large intestine surfaces and the cyst had burst. TAH-BSO + omentectomy, peritoneal washings, lymph node sampling and intestine scraping. The 1st day they told me it the chocolate cyst & other tumors were Borderline (no chemo needed) - Celebration! The next morning, the frozen sections came back: 2C endometrioiod. IP/IV chemo finished Aug 23, 2010. No recurrence.

SO glad I went with GynOnc!!! They are so much better at getting all of the cancer out.

*I would call the Gyn-Onc's office, or even visit, to find out what is going on with your appointment. When the girls at the front desk see how young you are, they will probably feel very sorry for you (average age at diagnosis is 63), and bend over backwards to help you.

*Yes, I didn't want to lose my ovaries either, before the surgery. But I sure was glad they were gone when I found out they were cancerous! Surgical menopause sucks. Worse than regular menopause. Take some Cymbalta or Effexor for the hot flashes, take LOTS of vitamin D and Calcium. That's all I've got for now.

I hope yours is a false alarm, as mine was not. Best wishes.

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BeachSheller

I really appreciate your background information, that is helpful and sounds very similar to my situation. My surgery date is set for Oct 8th and my gyn/onc seems pretty experienced and has come highly recommended. I ended up going to a different surgeon in a bigger city since the original office wasn’t very professional. (Long story!) He said a ca-125 of < 200 could be normal for endo, so he wasn’t too shocked by that. It sounds like he’s going to remove both ovaries and a hysterectomy. Also a few other things (maybe lymph?) He’s going to check it out first robotically, and if he needs to do an abdominal incision then he’ll be doing that as well if the biopsy shows cancer. I’ve heard it takes longer to recover if that’s the case.

During the ultrasound they did say there was not any blood flow to the cysts (but there was flow to the ovaries) and there are no ascites. I’ve also been trying to compare my mri images of the cysts with others on the internet, I’m def driving myself crazy with all of this.

My only symptoms currently are the abdominal pain, but it’s only really bad towards the end of my period. I’m still very hungry all the time, and I haven’t had any spotting. I feel a little pressure when I have to pee, but it’s not painful. I’m also bloated now that my period (my last period!!!) is approaching.

I’ve been trying to read up on menopause, thanks for those recommendations, I’ll save that and mention it to my doc after the surgery.

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