I'm shouting about the 'Disease that Whispers' - Please listen.

Hi all,
This is my first time here.  I saw all the messages regarding ovarian cysts & had to jump in with what I know. Basically a hemorrhagic cyst is cyclical (I believe they are sometimes call chocolate cysts) and should go away with next cycle; a simple cyst is in fact fluid filled and considered harmless and benign; a complex cyst on the other hand is solid and suspect and should always be investigated further. No I am not a medical person, just a 49 year old woman who three years ago was diagnosed with Stage III ovarian cancer. My journey has taught me much on the subject. I like to say "my heart may have saved my life" - My story takes a few twists & turns & I will try and get right to the point.  I have been telling my story to many women in conjunction with my cancer support group and the NOCC in hopes to bring awareness to this "Disease that Whispers". In June of 2002..I was going to have a procedure on my heart and as part of the preop test I had a urinalysis done which showed blood in my urine. I wasn't worried as I have had UTI's in the past so when my primary got a copy of test and insisted I go to a urologist I said "I'd get to it".  In September 2002 she reminded me again and I complied. The urologist ordered a CT scan to investigate my kidneys..etc. and instead found an "adnexal mass" on my left ovary. My primary told me to follow up with my gynecologist, which I did in November. A transvaginal ultrasound in December, show a 7 cm. "simple" cyst.  Another ultrasound was performed in January of 2003  (my next cycle) to see if it would disappear (as hemorrhagic do), but it was still there and this time the impression noted they could not rule out an ovarian neoplasm. Well, my gyne reassured me that everything looked harmless, the ultrasounds showed a cysts, my CA-125 was a 10 which is better than normal. So in March of 2003 I went in for an exploratory laparoscopy and came out over 5 hours later with Stage III ovarian cancer.  My malignancy was actually growing out of the simple cyst!  My gyne and oncologist call me "Lucky" because if not for the heart procedure which led to the urinalysis I most likely wouldn't have reported symptoms till it was very advanced. My tumor was small and except for one very tiny fragment (why I am a Stage III) it was contained to the ovary. I had a total hysterectomy, went through the chemo, the bald is beautiful moments and came out the other side feeling quite blessed. Now I speak at different events and am active in getting out the word to all women and raise awareness that OVARIAN CANCER is the most lethal of all gynecological cancers.  Because of vague symptoms (bloating, slight weight gain, diarrhea) which mimic other diseases such as irritable bowel...many women do not seek gynecological help quickly enough and 80% of all cases are diagnosed in the late stages. So I do this not to scare anyone but to pass along this message PLEASE READ UP ON OVARIAN CANCER   (NOCC at www.ovarian.org  is a great start),   ALWAYS LISTEN TO & BE IN CHARGE OF YOUR BODY & DON'T LET DOCTORS BLOW YOU OFF (

[angel429]

hi, I am sorry for what you have been through. God Bless you

[greenThumbs]

Thank you for sharing.  Your testimony is right on time for me.  You know, God has way about Him.  God bless you.

[Gatsby]

You are so very right.  God brought us to this site and look how we are spreading the word.  I am sure that those of you out there are not unlike me.  You talk about this to anyone who will listen.  The more we can inform ourselves and others, the more impowered we will be.  How many of you have gone to your drs after being on this post and gotten the tests you needed?  I say continue and Rock On Ladies.  We are a battalion to be reckoned with!!!   Godspeed
~Tascha

[SCHsongbird]

I'd like to add to this "disease that whispers" discussion.  I had just had a pelvic exam & pap smear one month before being diagnosed with late stage ovca, stage IIIC.  I had so much disease that the first time they opened me up they could only get the right ovary.  on the left side everything was stuck together and they would have had to damage some basically healthy tissue to get to the disease.  Six treatments of carboplatin & pacitaxil later they were able to remove all visible disease and I had a 14month remission before reoccuring last month.  Now I am on carboplatin & Gemzar.  I initially made the mistake of not having my pelvic done by a gyn with ovarian cancer speciality.  I had only minor symptoms, nausea, filling up quick during meals, urinary incontinence, bloatedness, alternating constipation & diarehea.  I blew it all off as either digestive tract problems or in the case of the urinary tract problems, getting older even though I am only 58.

[Moosiebjm]

I'm sure many of you may know this, but the retail store Claire's is selling bracelets and pins for fund raising for "The Disease that Whispers."  You know, that really cutesey girlie kind of store where you can buy all kinds a really cute birlie stuff???  I was there yesterday with my girls and bought a pin.  I'm going through a watchful waiting right now.  I've had all you describe.  Blood in my urine with no explanation, bowel problems, etc., etc., etc.  CT scan today.

Anyway, go buy a pin or a bracelet!!!  They're a really pretty teal color too.  Barb

[PPhelps]

I've had blood in my urine for a year now. No one knows why. But they did give me that medicine that turns your pee orange. All new doctors just have to try something, they just can't except I have it and there is not a reason for it to be there.

[MickeyVicki]

So, where are you now in the disease? In remission?

[Christianchick]

Hi MickeyV & all the other brave & strong ladies,

I have been "cancer-free" since my one intial round of chemo ending in July of 2003.  I had the 6 rounds of chemo and for the first 2 years I saw my oncologist and gynecologist every 3 months for CA-125 & CBC's, as well as pap tests.   My oncologist said that after 2 cancer-free year s I could then go to 6 month followups with him, but stay on 3 month CA-125's schedule a little longer. I had CT scans done right after my chemo and then again annually for the first 2 years. I also had 2 chest x-rays.  I also had my port removed last May...that really made me feel normal again.  I cautiously celebrated after this and my oncologist likes to tell me that I will probably

[Gatsby]

You are truly a blessing and we are richer for it.  I am so glad that you found this site.  Thank you!!  Godspeed
~Tascha

[Hazel30]

Thank you so much for your post and for sharring your story with us.  Your truly an inspiration to many of us.  After hearing your story you put a smile on my face and a few tears with a thought of how many women have to deal with this horrible diseas.  People like you keep me strong for my Mom and as she calls me her Angel too.  Im her strength in this battle I keep her going I support her and I listen and care, as you say many doctors dont.  Thank You so much

[birdcarver]

Hello,
My name is Michelle and I just stumbled on this site while doing research while waiting to see what is going to happen to me! I am 46 and during an ultrasound on my pancreas, a small cyst was found on my ovary. To follow up, I had a pelvic ultrasound a month later. The 3cm cyst had grown to 6.2 x 4.5 x 6.6 cm and has multiple thin internal septations and is being called an ovarian neoplasm. Along with this there is a hydrosaplinx. I was referred to a gynecologist, who sent me for another ultrasound and CA-125 blood test. He is a little reluctant to do surgery because I have many risk factors - I have cystic fibrosis (my lung function is around 45% of normal), chronic pancreatitis (caused by the C.F.) and am on coumadin (a blood thinner) because I have a stent in my superior vena cava.I have also had a previous emergency bowel resection in which 1/4 of my bowel was removed and I had a colostomy for 6 months before it was reversed with another major abdominal surgery. I am of the opinion that I should just undergo a complete hysterectomy and take away yet another problem and not be wishy washy about it. I had the trans vaginal ultrasound today, the blood test last week and I see my doc again next Monday. Since you all have been through this, I would appreciate any input on your experiences with this type of "growth" and treatment options.
Thanks a lot!