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132752 tn?1273342273

Concern and/or frustration

This is basically addressed to those of us who have actually had a dx of ovca.
The number of women who have been posting regarding their symptoms has started to weigh on my brain.  I'm curious as to how many of us had NO symptoms prior to the cyst/tumor being found.  What were your experiences prior to being dx?  What led to your dx?  

As some of you know, I was 22 when mine was found.  I went for a pre-marital gyn visit, during which the doc told me "congratulations, you're pregnant".  Needless to say, I was shocked and proceeded to tell him that this wasn't really possible.  After telling me that saying it wasn't possible could lead to embarassment, he ordered a pregnancy test...came back negative.  His commentary after that was that it was probably a cyst...advice: don't get pregnant on your honeymoon.  That was the last I saw of that individual. I went to a gyn when we got home who confirmed that he felt something and that it was probably nothing, but should come out.  The rest is history.  It had grown to the point that it shifted to my midline, over my uterus, which is why the first gyn suspected a pregnancy.  The gyn who did my surgery did a bikini cut, not suspecting anything out of the ordinary, and had actually started to close before the frozen came back.  Thank God, it was self-contained...nothing else was removed.  The second-look was done at MSK during which time they did an omentectomy, the washings etc and all came back clean.  It will be 28 years this month since that original surgery.  

Your stories are needed.
peace,
Anne
24 Responses
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Avatar universal
Hey there girl...Good morning!  It is going to be a hot one here in NW Iowa....I am about 30 miles south of the Minnesota border....Sanborn...just checked to see how far apart we are....783.2 miles and about 12 hours and 40 minutes....it is doable ...we shall see. If you were here I'd drag you out to the garden with me to clear the ever growing weeds!  I hope you are able to have a good day...I will check bac later.
Peace.
dian
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132752 tn?1273342273
Dian...
I understand what it is that you've been trying to get across to us these past few months.  

I found this quote on the NOCC Connecticut State page:

IN THIS PLACE......
      A pleasant, friendly atmosphere permeates the meeting
      rooms and halls. Laughter, sadness, joy, and tears are
      shared within these walls.
      In This place.....the depths of the eyes reveal one
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Avatar universal
I am in Ann Arbor, Michigan.  Where are you?
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Avatar universal
You know...after being part of this thread I do think we with the diagnosis of ovarian cancer
need a place to go where we can retreat and lick our most recent wounds...we need a lair ....we need some place to go where we control the light....sometimes we just need to be able to go to a quiet place where there is no bright lights....of course we always will need all of our cysters.....but sometimes we just need to be able to sit alone in the quiet and dark....just to think and re-group....regain our strength....please don't be offended....dealing with one's own mortality is a monumental experience.....nobody has said that but it needs to be said...this is a tough place to be....there is a difference between the "fear" of ovarian cancer and the "malignant" reality....big difference....like they say " close only counts in horse-shoes and hand grenades".....again, I do not wish to offend anyone but this is truth and reality as 1% of us know it...Blondie....please help us find a page....we do need your help.....we all need eachother but we have different needs as there are differing circumstances here....all needs can be met and hopefully without offending anyone....
Peace.
dian
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Avatar universal
Symptoms....hmmm....in hind site it appears we all had symptoms we didn't recognize, take seriously or figure were related.
Hind site is great, huh?  Any way, just as many of you have said...I had pressure on the reectum and eventually the bladder, sometimes pain with intercourse, some bloating and weight gain....that's about it.  I always had normal paps and bimanuals....the CNP said all was well.... but, because of the pressure I wanted to see a gyn to discuss suspending the uterus.  After my exam I was told I had fibroids...to go home and wait for his receptionist to call and schedule an ultrasound.....I refused to leave...scheduled the us for 6 hours later, but the same day.  After the tech did the trans vaginal and regular ultrasound I was told the gyn would call with the results...again, I refused to leave telling her she had the film in her hand and he was at the end of the hall...I will wait for him to take a look.  Before I left the office I had already scheduled an appt with a gyn/onc the next morning at 7:30 am......after that appt I had an appt in the O.R. the following a.m. at 6:30.....the bowel prep was begun immediately.  I was walking the night of day 0 and was told chemo was in the cards.  My chemo ended September13, 2005.....I am presently 9 months out...my last ca125 was 1.9......I am aware of how lucky I am.....I am equally as grateful..I was like a bulldog...I wouldn't let go until the situation was under control....I couldn't live with the situation controlling me....I continue the strruggle with my weight but I do think the progesterone is helping.   I am the luckiest person I know....I have always said that....I also believe my disease has made me a more valuable person as I can relate to others in ways I couldn't have before....so, in a strange way, I guess, this experience has become a gift of sorts.  Not that I want any more "gifts".......we are truely an unbeatable force...this force is only in it's infancy but we are beginning to be able to pull ourselves up ....won't be long before we take our first steps and begin to walk....side by side and together.....we will get there.....because we are all in this together, and I do mean that, Ladies...none of us stands alone.
Peace.
dian
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Avatar universal
Carelyn....where are you?
dian
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Avatar universal
I have told my story before, but for the newcomers....here is mine.  I have been an exercise junkie for the past 20 years, ate healthy, appeared to be in great shape and condition.  I actually was still running ( 2 1/2 miles) the day before I went in for surgery...I was diagnosed last August 26, 2005, OVCA, StageIII.  I had a complete hysterectomy and exploratory surgery on 8/26/05.  My gyn/onc sent me home for only 1 week, before I had to begin chemotherapy...she said it was so aggressive that she was afraid it would quickly spread to my breasts.  I was on Taxol and Carbo for 18 wks, finishing Dec 22, 2005.  I had ct scans, x-rays, and a pet scan...things appeared clear.  Within 5 wks, I was applying for an ovarian cancer clinical trial, and had new blood tests, ct scans....but, much to my dismay, it was back!!!  Well, in reality, we know it doesn't really disappear...just hides its ugly self.  I am on Topotecan chemo drug presently.  Some say they have aged with chemo.  It is true, we do age... but I have to say, I feel and look with all my limp, non-toned body, and blimpy belly & wrinkles....that I have aged 20 yrs in the past 10 1/2 months.  I have continuous pain in my torso and sides.  I do my best to stay real positive.  My energy is down to nothing.  I try to walk a few days a week.  I take vicodin for pain, and a week ago I was prescriped morphine drip ( under tongue) when it gets real bad.  It is a lonely journey, and we all need one another on this forum;  that is a fact.  My chemo Topotecan is on a 3-wk cycle.  I get Topotecan 5 days a week, then the 2nd week, I get a Nupagin shot Monday through Friday,...and then, I get Aranesp shot(for anemia) every-other-week.
     God bless all of the sisters dealing with any of this...it is horrendous...and maddening that women no almost zilch about ovarian cancer!!!!!!    love to each of you, Carelyn
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107366 tn?1305680375
COMMUNITY LEADER
So what's your next step?  I am truly hoping it is a mistake, or there is something else going on that has caused it to jump.  But just keep in mind no matter what happens, you are strong enough that you've fought it twice before, and you can do it again.  But for now, I will send you peaceful thoughts and prayers that this is going to be nothing more than a clerical error.  Please let us know what happens.

Gail
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132752 tn?1273342273
Tybear...you're reading my mind!  Of course, I'd much rather we all belonged to the same bowling league or volleyball team, but even just reading the experiences that were posted on this thread...has just taken my breath away.  Talk about looking into the face of hell!  I wish I knew of a way for us to really get these messages out...first, to recognize the symptoms of ovca and secondly, that it doesn't have to be a death sentence.  The ratio of 1 in 57 is staggering.  The present mortality rate is unacceptable.  I'm about ready to bust over this!
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Avatar universal
Gail, you certainly went through the wringer.  I also notice the similarity with these symptoms.  I know we don't want to think ovarian cancer with every little twinge or discomfort but I really believe that many doctors don't consider it just because it is less commom than other medical conditions.  I know that my gyn was devastated when it was discovered I had advanced ovca.  I think he learned a valuable lesson from this so maybe my situation will help someone else.

Christa
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132752 tn?1273342273
Gail...
Thank you so much for taking the time to share your story. My thoughts and prayers are with you while you're looking ahead to your one year anniversary of survivorship.  We'll all be celebrating with you!
peace,
Anne
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Avatar universal
I was reading about Patsy Ramsey and how when her Cancer came back and that it was just three little spots and they thought NO Problem. Last time I only had three little spots and they went away quickly with Chemo, but it seems sometimes just when you think things are going good, WHAM you have to read something to the contrary. It seems like I am an Elephant when it comes to this disease, I don't forget anything I hear or read about it!!
My diagnoses is pretty comparable to Newlifegal's. It will be three years in Sept. when first diagnosed. I do feel good and have a good quality of life so I really can't complain. (even though I do to poor David) Have a great day gals!!!
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135691 tn?1271097123
wow - you know what? I think the women who are battling this monster are some of the strongest people I've ever had the priveledge of speaking with - I'm lucky to be in your company. (of course, I'd much prefer it if none of us were in this at all!!) I think we need to get our voices heard and really let women know that cancer is not a death sentence. I tell you, I sure thought it was! Now look at me - healthy, strong and more alive than ever. (although I do look like I've aged about 10 yrs!). I remember my Dad telling me that when he got the call while he was on vacation in Florida that I was admitted to the hospital for tumors in my stomach he instantly thought "tumors, cancer, your going to die". It's not like that anymore. I look at it this way - atleast I got the chance to fight. Now I will make sure that I will share my story with anyone who is willing to listen in hopes of raising awareness about Ovarian Cancer - god forbid one more woman should have to go through this.
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135691 tn?1271097123
Wow... That is very disapointing. I'm sure maybe it's just a blunder, after all 3yrs is such a long time to have gone with no recurrances. I'm sure your Dr will sort it all out for you shortly. Hopefully they will give you another test and maybe get some more positive results. In the meantime, try not to worry too much - Your feeling great and that's what you need to remember and keep doing. Take care of yourself and keep us updated.
Becky
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Avatar universal
I cannot belive it, I just called for my ca125 results and they have jumped from 22 to 60. Very dissapointed right now. I have no symptoms at this point so I am hoping that maybe there is a mistake!!!
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107366 tn?1305680375
COMMUNITY LEADER
This is a tough one.  Before dx, I would have said no, I didn't have many symptoms, but looking back, now I know I did.  I have always carried extra weight on me, so my stomach getting larger didn't really concern me much.  But then about a year ago, I noticed my double chin disappeared, and my nek, shoulders, arms and legs started getting really small, but my stomach stayed the same.  I looked like I was ready to give birth any minute (I was 35 at the time, no kids).  In fact, several people did think I was pregnant, and I got several Comments/congratulations about it....talk about awkward!  But I was in complete denial.  My periods have never been regular (I am pretty sure I was an undiagnosed case of PCOS), so when I skipped several months at a time, I never thought anything more of it. I have Crohn's, so my bowel habits didn't clue me in, either.  I did, however, vomit nearly every time I ate...when I did eat.  I had no appetite to speak of.  I had a vacation planned for the end of July last year, but about three weeks before I was to leave, I noticed an umbilical hernia.  I told myself I had no choice but to have it seen about when I got home.  I didn't want to go to the doc before because I was afraid it would turn into something that would ruin my vacation, and this was the first vacation I'd had in 4 years.  So I waited another month or so and it got easy to put off going to the doc again until one day at work, I stood up and nearly fainted.  It was like exhaustion took over my entire body, and I was short of breath. It had gotten to the point that I couldn't stand long enough to shower and dry my hair...had to sit on my bed with the hair dryer.  I made an appointment with my GP for the heria (and had since developed hemorrhoids (TMI, I know, but that's what this thing did to me).  He examined me and agreed the hernia needed to be taken care of, but noted something had to be wrong in there to cause the hernia.  He ordered a CT scan because he initially thought I had an enlarged liver.  Had every blood test known to man (except CA125) and it all came back normal, other than being really anemic.  Had the scan two days later.  It was read immediately, and within the hour, I was back in my GP's office getting the news that there was a large mass on an ovary, and it was so large, the couldn't tell which ovary it came from.  It was pushing everything in my abdomin up, which is why he thought I had a liver problem.  Saw my GYN the next day, and he was very up front and honest with me saying he didn't know if it was cancer, but he'd rather me see a GYN/ONC just in case.  In the meantime, he took a CA125 that came back at 3053.  He referred me to a teaching hospital about two hours away.  Saw the GYN/ONC a week later, and he scheduled surgery for 8/29.  I will never forget sitting in pre-op watching hurricane Katrina hitting New Orleans on CNN.  I still had hopes it was just a simple mass, but understood the probability that I'd have a hysterectomy no matter what.  Like Tybear, I was expecting a two hour surgery, but ended up with 6 1/2.  The mass was cancer, stage IIIC.  It had spread to my colon, diaphragm, and omentum.  Surgeon thought I'd have to have a colostomy, but his partner joined the surgery and was able to ressect my colon after removing about 12 inches of it.  The mass was 44cm, and everything they removed weighed about 40 lbs.  Had an incision that took 100 staples to close.  GYN/ONC got 99% of the visible cancer.  The only part he couldn't get was what was on my diaphragm.  Started chemo three weeks later, and finished December 29.  So far, so good. CA125 continues to jump around some, but I try not to let it get to me too much.  

Sorry to ramble on, but I think so many of our symptoms...OvCa dx or not, are so similar.  I would never be so bold as to suggest ANYONE ever not have it checked out.  I learned the hard way, and don't want anyone to go through all that if they can prevent it, or at least get a dx earlier.  Suggestions to go to an internist because it "might" be gastro problems scare me.  How many weeks may pass before that avenue is exhausted with nothing found?  My advice...get to your GYN and ask (demand if you have to) scans, US, and any other diagnositic tests.  Don't just assume it is going to go away.

Gail
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Avatar universal
Hello there kiddo.....your parents and sister must be terribly proud of you...I hope you are too because I am proud to simply be allowed to read your story.  You are an example of "womanhood" that is not held up to the light often enough....you are a heroine that is not honored.  Your son is blessed to have you as a mom and your strength and endurance for an exapmle to follow....you are blessed to have him as well as his love and need of you gives you strength and reason to fight as you are....your parents and sister are a blessing for you as you are for them.....you are a formidable team......I will be your head cheer leader!  
Peace.
dian
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135691 tn?1271097123
I had sharp, piercing pains that would come and go - actually, I maybe had them less than 6 times per day. They were bad enough though, to have me stop and double over. After a few weeks of this, it got gradually worse. Hope this is helpful - anymore questions, let me know!
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132752 tn?1273342273
newlifelegal...
My thoughts and prayers are with you...please stay strong and keep fighting.  It's almost a year of survivorship for you...congratulations!  God bless your gastro doc for thinking outside of his own domain.  Thank you for sharing your story.  I'm sure that it will help shake a few trees, encouraging some of the women here to keep looking for assistance.  Please keep us posted.
peace,
Anne
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Avatar universal
Hello,

I read your story and am wondering what the pain in your bladder felt like.  From the time you first had the pain to your diagnosis, did it continue to get worse and worse or did it come and go?  I am having some bladder symptoms (urine test negative) and your story has made me wonder.

Glad you are doing ok.

Angela
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Avatar universal
Thanks for sharing your stories, Becky and Anne.  I was dx'd on 7/6/05 making it almost a year ago.  What a year it's been but I am still here!  

About 6 months prior to knowing I was dealing with cancer, I just noticed a general feeling of fatigue.  I attributed this to turning 50 and just thought I was slowing down.  Previous to this I was in very good health, running 3 miles a day and eating well.  A couple of months later I experienced weight loss, increased constipation and strange painful twinges in my abdomen.  I went in to see my gyn who did a TVUS.  Unfortunately for me, I was misdiagnosed with what was thought to be bilateral functional cysts about 2.5 cm in size. So a possible gyn problem was put to bed. Thinking this might be IBS, I was put on fiber which made me even sicker. A colonoscopy was done which revealed a normal colon.  Finally the GI doc decided to do a CT scan.  It was 2 months after my ultrasound and the "cysts" had grown from 2.5 cm to 7.5 cm and there was disease throughout my pelvis, liver and ribs along with approximately a gallon of ascites fluid.  How tragic that the ultrasound was misread; I may have been at a stage where I could have more of a fighting chance.  But I realize it does me no good to cry about what may have been; I must deal with the here and now so I've put all those feelings behind me.  That's my story and if I have learned anything from this, it is to be persistent about getting answers. If something doesn't seem right, continue to pursue it until you get an answer.
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132752 tn?1273342273
Becky...
Thank you for sharing, too.  So many issues to deal with...each needing their own time to be mourned.  Certainy, compromise of fertility is not the least.  Thankfully, you have a support system and a son to sustain you.  
peace,
Anne
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135691 tn?1271097123
Thank You for sharing. I was 26 last year and had, really, no apparent symptoms. I had just seperated from my husband and was feeling great! I had a slight pain in my bladder that would come and go. Thinking it was just a bladder infection, I went to the walk-in clinic, and they did a urine test, which came back negative. A week later, and in more pain, I went to my family Dr, who was away on holidays but had someone else filling in for him. He concluded it was just a bladder infection (even though my urine test was negative) and sent me on my way with a prescription. A few days later, I got my period, and the pain in my bladder came on and never left - I went to the ER and an ultra sound was ordered for the next morning. I had my US and they noticed my kidney looking enlarged. Suspecting stones, they ordered a CT scan. I knew something was going on when they asked if I had recently had a barium enema. They ordered another scan with Dye, and made me wait. I was alone, and had been at the hospital for 7hrs at this point, with no one telling me anything. I threatened to leave if someone wouldn't tell me what was going on and a nurse sat with me and calmly said "honey, they have found something and I strongly urge you to stay so we can find out what it is". I called my sister and she came just in time to hear a Dr tell me I have Tumors in my stomach and they would do a biopsy and admit me. I was in the hospital for a week. My biopsy came back so inconclusive -  I was diagnosed with everything from psamommacarcinoma to breast cancer! So many Dr's told it's not cancer, and if it were, there's nothing to worry about. Needless to say, after meeting with a gyne/onc who told me the same thing as everyone else, I was scheduled for surgery. Expecting, at most, to lose an ovary, I went in happy to get my life back to normal. You can imagine my surprise and my families horror when the Dr told my Mom "we were wrong". I woke up to find out that not only did I have stage 3c cancer, I had also just had a hysterectomy. I was in shock. The tumors were so far spread that I lost large quantities of my bowels and a piece of my bladder. My 2hr surgery turned into a 4 1/2hr surgery. I had major complications with my Kidney due to post op swelling, and needed to have a stent put in - as if having cancer wasn't bad enough! I completed chemo February 23rd and although I'm only now dealing with my infertility, I am healthy and getting stronger each day. I have no family history of ANY type of cancer - please know that it doesn't matter what your age - it can happen to anyone. I am blessed with a wonderful 3yr old boy, and if it weren't for him, I really don't know if I would have had the desire to fight the way I did. Thanks for listening!
Becky
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132752 tn?1273342273
PS...
I thank God for the gyn who did the surgery for two reasons:
1.  He didn't spill anything.
2.  He had the humility and intelligence to recommend that I see a gyn/onc for follow-up.
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