extremely worried about 9cm ovarian cyst

[winstymom]

I recently found out that I have a 9cm complex cyst with a thick wall(I overheard the thick wall part and assumed it referred to the border of the mass not the endometrium?) I am 52 ,pre or perimenopausal and in good shape as I am in the fitness field.My first cousin on my mothers side was diagnosed with ovarian cancer 2 years ago at age 45(3 children).Her operative report had several descriptions in it including clear cell adenocarcinoma differentiated jlg,something about a tubal papillary growth pattern ,foci of the mucinous differentiated. Also torsion,ovarian abscess and right carcinoma with clear cell features.thickness 2.2 10 cm mass. I never thought this would be relevant to me as I thought it was something she either inherited from her mothers side of the family or just randomly acquired. Her father is my mothers brother. When I kept questioning my mother (who always said there was no cancer in her family)she said she thought her mother (my and my cousins) grandmother had an ovary removed when very young . She had no idea how she knew this(mother was  old school never spoke about these things) and she had no idea why. This was the first I ever heard of it and suddenly my optimism of my cyst being benign went out the window. Naturally I have been researching 24/7 and feel doomed.What is the likelihood that I will have the exact same type of cancer as my cousin ? Do you think it is at all possible (and I don't mean remotely)that I could have a benign cyst? My Ca125 was 6 and my cousins was 250 but I realize that is not very meaningful. PLease help Thanks winstymom

[winstymom]

HI Ravenlady..thanks for the reply. My history: have seen 5 or 6 docs of varying specialities to figure out each sympton for the past 1 1/2 to 2 years. Started experiencing almost complete shutdown every once in a while in my aerobic classes. Had many checks for heart disease including hospital stays. Always mentioned the dizziness and fatigue. Naturally results were in favor of incredibly strong heart,great cardiovawcular system etc. Developed bizarre full body(inside mouth and nose) erythema  mulitforme like rash that had to be cleared up with prednisone(this past April). Best they could  determine was that I was allergic to the 2 aleve I took 3 weeks prior to the outbreak for the bad pain in the lower right pelvic area into iliac area. Saw my gynecologist 2 weeks before the rash for my annual..however when I arrived for the appointment I was seen by a nurse practioner.I was a liitle angry but she did the exam and I'm pretty sure i mentioned the right lower pain but she thought I should also see a female sportsmedicine doc. I don't recall her examining the ovaries but supposedly she did.IN July I had debilitating pain in the iliac area,back and down my leg.It was over the 4th of July and I had gone away with my daughter. I could barely walk for 4 days and couldn't even take a pain killer. Saw my orthopedic doc..and since the pain had gone away he thought it was just an inflamed muscle or ligamen t pressing on the nerve. Continued to have lack of usual energy but would always push myself to have the utmost energy in my classes. It was really making me angry that I was feeling this way.In JUne saw allergist to figure out rash origin(btw ANA was positive)so I thought I had an autoimmune disease. end of June saw thyorid specialist..thought I could have low thyroid. Jan 4th had 4 hours of excruciating abdominal pain for 4 hours..was a chaperone for my daughters sininging group at another high school and I couldn't leave. After 4 hrs pain went away.   Saw primary care doc on jan 17th..was sure back/leg pain was a bulging disc..didnt say anything about abdominal pain. The next day I got a gush that I thought was my period since i missed it for the first time in my life except when I was pregnant. It was unusual and heavy. Called the gyno.went in the next day. They did Ultrasound and doc told me it was 9cm and thought it was a cystadenoma. He handed  me 2 pamphlets on ovarian cysts and wisked me out the back door to a blood lab.I overheard the US technician tell the doc something was thick. They arranged an appointment with a gyn/onc. Did I miss anything??!! Sorry so long but that's the story. I am ill with worry given my newly discovered family history.

[MickeyVicki]

I have a question:  have you ever been diagnosed with endometriosis?

Depending on the statistics that you read, 85 to 90 percent of women with ovca do NOT have a family history of the disease, so it may very well be that there is no family connection.  That is a shame, though, that your grandmother would not share such important information with her family.  I had a grandmother who was like that as well.  However, she had a blabber-mouth sister who more than made up for it!!  Talk about a tell-all!

[winstymom]

HI MickeyVicki,I have never been diagnosed with endometriosis,although when I first got my period and into my early teen years I suffered very debilitating cramps but never saw a doc for it and never saw gyno until I was 19.

[MickeyVicki]

I asked about the endo because the basic description of your cystic mass is much like mine, except that it was smaller when discovered, and larger when removed a few weeks later.   Mine also contained solid components in addition to being complex.

As for some of your other symptoms, they seem similar to the more unusual/less common symptoms of perimenopause.  You have  to remember that the process is "puberty in reverse".  Weird things start to happen, like odd and extreme allergic reactions, dizziness, tiredness... have you suffered heart palpitations at times, and have you  learned the hard way that you can no longer eat foods that used to give you no problems?

I started this nonsense myself about 5 years ago.  Then less than two  years ago, I developed an endometrioma.  Now, I have at least two cysts on my right ovary, so I am beginning the process all over again.

[winstymom]

Mickeyvicki...you give me hope!  Yes I have had heart palpitations including sustained tachycardia(rapid heartbeat..117 beats per minute for 2 hours)...my pulse is usually 44. Yes...  I always thought my stomach trouble was from certain foods, in fact I'm sure some of it was..but just these last 2 weeks I've had a belching problem,particularly after I eat.The leg,back sciatica problem was definitely strange and excruciating and without any other cause ie injury or muscle pull. I have assumed that most of these things have been from perimenopause until I got the news about the big mass sitting in or on? my ovary. I appreciate your input ..it really helps as I am a wreck.Thanks

[MickeyVicki]

For what it's worth, I'd had my annual exam not terribly long before I started problems which I eventually learned were the symptoms of my cyst.  When I had my initial appointment with my doctor, and told her that I had symptoms of ovca, she looked at my paperwork from my last exam, and then looked at me as if I had lost my mind.  Still, she sent me on for an ultrasound, and later told me that I had made a good call.  

My heart palpitations, accompanied by hypertension, began about three years before I developed the complex cyst. These episodes have occured intermittently since, and the doctors can find no reason for them.  It took dedicated research to make the connection to perimenopause.  Most women just get hot flashes and acne!  The gastro-intestinal problems developed at about the same time as the palpitations.  However, both these problems were noticeably worse when I developed my cyst in 2004.  These recent  GI symptoms also triggered the request for an ultrasound that led to the I-know-I-have-cysts-on-the-ovary episode that I am currently "enduring."

[winstymom]

Mickeyvicki, I just found out that my sister had endometriosis that wasn't diagnosed until she had her tubes tied. Is endometriosis difficult to see during annual vaginal exam?

[MickeyVicki]

Endometriosis cannot be definitively diagnosed without surgery.  Most doctors make their diagnosis based on the complaints of the patient - the monthly symptoms that include  bloating, frequent urination, abdominal pain, constipation or diarrhea, hemorroid (probably spelled wrong!)  flare-ups, heavy periods, severe cramping associated with the onset of the period...you get the idea as you probably at least  know someone with the condition if you do not have it yourself.  But without surgery, a doctor is truly not able to see the condition, unless the patients has implants in the vaginal area or on the cervix.  

The interesting thing for me in this subject is that I never had these symptoms.  I have known what these symptoms were all my life, as it is a common problem amongst the women of my family (both sides.) I thought that I would know if I had it. Thus I was incredibly surprised to learn upon waking from my surgery that I have a terrible case of endometriosis.  I saw the photo record taken during my procedure. There were not only newer and active implants, but old scarred adhesions in my abdomen.