Not Yet Diagnosed, But I NEED HELP

[bellephi]

Hi My name is Marjorie.
I have not been diagnosed with OC but I feel that I really need to ask women who have been diagnosed some questions.
This is my story.
For over a year I have been experiencing pain in the left side of my lower back.  I have gone to two doctors and they thought it was kidney stones etc.  Nothing turned up on my CAT scan, that was six months ago.  A few months ago the pain spread to the left side of my pelvis and sometimes I get awful pains on both side of my pelvis. I also have suddenly become nauseous.  The nausea is wierd because I can just be sittting down watching tv and suddenly I am in the bathroom throwing up.  I am always bloated  and gassy.  And I am always in pain.  Three months ago I went to my gyn and he saw that I had fluid build up in my left fallopian tube and a cyst on my ovary on an ultrasound.  He told me that the fluid and the cyst cannot be causing the my pain.  He also told me fallopian tube cancer is rare so I shouldnt worry about having that, plus"you are too young to have that cancer".  He did a follow-up ultrasound last week and the radiologist found a new cyst growing outside my right ovary 5cm wide.  This cyst came out of nowhere and in a month it was already 5cm.  My doctor started freaking out.  he was telling me all sorts of things.  He gave me a CA-125(which was low), ordered an MRI, sent me to a teaching hospital that has a strong cancer institute,and told me I have to remove the cyst because he does not know what it is or where it came from.  I dont know what to think or if I should be worrying.  Can anyone give me any insight?  Is it possible to have all the symptoms of OC and it just be a benign cyst making me ill?  Do benign cysts grow that fast?  I have tried doing research but I come up short.  Did anyone of you experience this prior to being diagnosed. I really need some answers.

[yeyeth]

I was diagnosed with PCOS about 7 seven years ago and i am 38 now.  I used to take the hormone pill to have period (prescribed).  Then i stopped taking it maybe shortly after a year coz from then on my period have been regular except last Nov. of 2007.  Finally, my period came Last December 30, 2007 BUT, BUT i still have it up to the time i am posting this here.  Lots of Blood Clots but no severe pains at all just itchy nipples yesterday.  Do you think this is related to ovarian cancer or anything like that?  I am terribly scared as to what the doctor will tell me so i thought i would ask for some opinions from this forum first.  Please help me!!!

Thanks,

Yeyeth

[Carol139]

Hi Marge,

Yes, when I started the issue that led to the hysterectomy, I would have gone out of my skin with worry if I didn't have these support boards.

Did you ever go on hystersisters.com  ?

nice site too.

[bellephi]

Thanks Carol. Happy to know that it is possible. I will definitely keep you all posted.  The waiting game can be frustrated but it really brings me calm when I know that I am not alone and I have the support of all of you .
xo
Marge

[Carol139]

Hi, I am 48 (well next month) and had a full hysterectomy June 2006 .  Well, full - but they left an ovary so I would not be thrown into medical menopause.

A few months ago I noticed a dull pain - kind of like pressure, annoying kind, not painful. Except when I peed.  Then it felt like a tugging - more of a pain than the other pressure I felt normally.  
Anyway, nothing to send me flying off to the doctor.

So, Jan 11, I pee - wipe - blood. Hmmm, no uterus, should be no blood. Wipe again. Yep. Blood. Clear, bright, red.

Went about my day - as it went on, started to feel like razor blades as I peed. So, I called the doctor. Went in. He cauterized one of the cysts that popped and said I should go for an ultrasound.
He didn't say anything like "Holy cow"  or  "Geez, Carol."  Just matter of fact about it.

The ultrasound a few days later showed a 12cm cyst.

He said with it that size and me only a few years from starting menopause on my own, he does not feel leaving it in and waiting to see - would do me any good,
So, it is coming out on 2/5/2008

Will be medical menopause, but better than having it burst or twist


SO - yes, they do grow that fast. Yes, they cause pain, they are pushing your organs around into places they should not be.

Feels like I have to go to pee or evacuate constantly. Even though most times there isn't much there - if anything!

Ache down my leg. In my back.  In my front.    

You know how you feel.   If he can't / won't help - or you feel like you need another opinion, I would definately get one.

Keep us posted!

Best wishes !!!

OH - my CA125 was a 13 - so, that was good.  


HUGS and hang in there!

Carol

[bellephi]

At this point a GYN ONC is out of the question.  My doctor says it wont be necessary.  And my insurance will not pay for one unless I am already diagnosed with cancer.

Just a quick update.  I spoke with my Doctor this weekend and he says he cannot believe that a cyst that was never seen on any of my previous US came out of nowhere and grew to 5 cm in four weeks. Is that even possible?  He thinks the radiologist made a mistake(which is a scary thought in of itself).  Unlike many others I have suddenly gained weight, alot of weight.   I am scheduled to have an MRI this Friday.  I get frustrated with my doc because he is always telling me that I am not in pain, instead of asking.  I feel like screaming sometimes.  I have been feeling constant dull to excruciating pain for the past year.  I know that I am finally going in the right path but it gets really frustrating when your own doctor is not always taking your symptoms seriously.  This is my life we are talking about!

[bellephi]

Thanks alot for all your kind words and information.  I am so happy I found this site.  I am really trying to stay positive.  I just feel as if all this came on suddenly, right before my wedding.  I pray that everything works out.  Thank you again and I will definitely keep in touch
xo Marge

[Jan214]

I have only known one other woman named Marjorie.  She too was told that she was to young for "that cancer" and  two years later she died from OVCA.  She was only 38 and she was my mom.  I would have said to get a new Dr when he told you that but since he had enough sense to "freak out" when he saw the other cyst I guess he is alright.  Going to a cancer center is a great thing to do, NOT BECAUSE YOU HAVE CANCER, but because if you do they are better equiped to remove those cysts without busting them.
You should definitely not be worrying.  You don't know that anything is really wrong yet and you don't want to get yourself worked up over nothing.  Even if it is something you don't want to waste your energy on worrying.  Be proactive, go to the cancer center, do what they say.  Make sure you have a gynonc look at you.
Drs. like to tell women that cysts aren't painful, but they choose to ignore the fact that millions of women tell their drs that cysts are painful.  It is something we on this forum know, but somehow the drs don't.  Benign cysts and cancerous cysts both cause pain.  I have had both and I passed out from the pain of cysts years ago.  I hope this is making sense.  Just woke up and ate a handful of pills for breakfast.  Get the cysts checked just as soon as possible.  Good luck to you.
Jan

[hopeshell]

Hi Marjorie,  You are on the right path going to a gynecologic oncologist and teaching hospital.  That is the most important thing you can do to help yourself get a successful surgery.  To answer your question, yes...you can have all the symptoms of OVCA with a benign tumor.  Both benign and malignant cyst can grow rapidly depending on the type.  It sounds like you have experienced quite a few symptoms for quite awhile but you don't say your age.  Cysts like these are more common in premenopausal women.  Any complex cyst that is 5cm or above is usually removed to rule out ovarian cancer.  This is the importance of having a gynecologic oncologist involved.  I was dx with stage 1a last July and I am 37 years old.  I had lots of pain prior to dx and urinary frequency.  During my surgery I was also dx with endometriosis and endosalpingiosis.  Both of these conditions can cause pain like you are describing and aren't cancer related.  The waiting is hard but you just can't know for sure until they mass is removed.  It is good your  CA-125 is low.  Most cysts (even worrisome ones) are benign and the odds are with you.  There have been many women who have posted on this board with a story like yours and later posted that their surgery found a benign condition.  Keep the faith and hang in there during this tough waiting period.  I wish you well.