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Can someone please speak to me about my Ovarian Cancer concerns?

she443
Posts: 1
Joined: Mar 2013

Hi there,

I have been ill for several months, but at least for the past 1 month or so I have been having terrible symptoms and I feel like I'm dying....

I had a TVU done on 11-13-12 and they found a 2.3 cm cyst on my left ovary. It's now March and I have seen 4 different doctors bouncing me around (1 Emergency room doctor stating that I had Anaplylactic Shock and a thyroid issue- both of which turned out to be untrue), my Primary Dr who gave me Prednisone & Epi-Pen, 1 Allergy Specialist who tested me for every allergy under the sun and found I am not allergic to ANYTHING! And 1 Rheumatologist who finally gave me a diagnosis of my SYMPTOMS. They have no idea what's going on with me!)

 

One of my symptoms was FINALLY diagnosed by the last Dr I saw, I was diagnosed as having Venous Stasis, because SOMETHING is blocking my veins. So, all of the blood that's supposed to circulate in my body is pooling in my legs- what's blocking this- no one knows! He asked me about my history with pregnancies and I told him the truth, been pregnant 1 time & had a miscarriage between 4-6 weeks. He said he asked because "a big fat uterus" could be blocking my veins. I have been single for a long while and have not engaged in sexual intercourse in over 1.5 year, so I KNOW I'm not currently pregnant.

 

What I have had happen over the past 10-12 months or so is: 40 lbs of unintentional/unexplained weight gain (I have Celiac Disease, so I already do not eat Fast "Food." I also, have NEVER gained this much weight ever- especially without trying and without explaination). Most recently since the Venous Stasis, I gained 8 lbs in 13 days! So, I have been having tightening and tightening of my clothing. I look like I am 6 months pregnant! So, abdominal swelling. Abdominal & Pelvic pain (I do have Endometriosis, but this is different pain). Cannot eat much without feeling full/loss of appetite- yesterday I ate 3 apples, today I ate 2.5 apples- that's it. I am having bowel changes, constipation, that's not related to anything else. I am extremely and severely fatigued ALL of the time. I now have full body swelling, mainly in my abdomen and below. My legs and feet are so swollen. I have sudden urges to urinate and then I urinate for a LONG time. If I do try to eat more, like an actual healthful diet- I vomit. Also, all of last year- despite the weight gain- I didn't have a period every month. I had about 3 periods last year. I have been feeling absolutely miserable for such a long time.

The Radiology Dept called me yesterday, Sunday at 10:21 am, I was at church. They never bothered to call again! Instead I got an email from my Doctor (I have an HMO) and he gives me the number said they were calling & couldn't get a hold of me- I didn't get that message till this evening. So, today was wasted because I didn't know which department was callling to set up my scan- a scan with Radioloy of my abdomen and pelvis. I also messaged my OB/GYN and told her what was going on. I asked her details about the cyst that was found in November and how she knows it's gone. She doesn't. She stated that if I still have pelvic pain, which I do- than she would make me another appointment for a TVU. So, I emailed her back and asked her if she would please schedule one.

What were your Ovarian Cancer symptoms? Did you ever have Venous Stasis for any cancer? What is the likelihood that a cyst can turn maligant when I do have a family history of GYN cancers and colon cancers?

I believe that they won't take me seriously because I am 33 years old. How old were you when you were diagnosed? Were your symptoms anything like what I'm describing I'm going through?

 

Thank you & blessings,

 

~S.

 

 

uttx
Posts: 6
Joined: Mar 2013

My thoughts and prayers are with you, as well as your physicians, that they provide you answers and a course of treatment to get you feeling healthy again. 

i do not have any answers as I am having my first appointment this morning at MD Anderson. 

Prayers...

heatherstage3
Posts: 7
Joined: Feb 2011

my name is heather. i was diagnosed with stage 3c ovarian cancer when i was 27 im now 30. i was misdiagnosed for 2 years before i was diagnosed. my symptoms were

getting fat, i looked like i was 9 months prego but only in my belly

painfull intercourse

frequent periods, like every 5 days i was bleeding for 3 days

nausea, diarreah, fullness, throwing up

pain in my abdomen and back

it was crap because i went to the dr every two weeks for two years and when i moved to tennessee from michigan i went to the er a week after we got here cause i couldnt stop throwing up and they took one touch to my belly and hooked me up to an iv and wisked me away to xray then ct then ultra sound. they found masses on my ovaries, bladder, colon, and stomach plus 6 liters of cancerous fluid. i was then sent to an oncologist and he schedualed surgery immediatly. i was so scared. he said if it would have been caught when i first started having symptoms that i would have a better survial chance. i went through IP chemo, which is where they attach a port to your ribs and a tube goes directly to your abdomen and they put chemo in there. i also had iv chemo through my viens. its a tough road. im sorry you are having these problems. if you wanna talk about it more you can feel free to message me. my email is mazeheather@yahoo.com. i check it throughout the day. i can give you my cell once you message me through my email.

good luck if i dont hear from you

Alexandra's picture
Alexandra
Posts: 1207
Joined: Jul 2012

First off please do not assume that you have cancer. At your young age your symptoms are more likely related to a number of other benign conditions.

If you have family history of breast and ovarian cancer you may want to get a BRCA1 - BRCA2 test that would confirm or eliminate genetic mutation.

Sorry I never heard of Venous Stasis being related to ovarian cancer. I know that transvaginal, abdominal and pelvic ultrasound do not always pick up on tumors, in my case it failed. My cancer was diagnosed by CT scan and CA125 blood test. Disdended abdomen could mean ascites, that could be tapped and checked for malignant cells (cytology).

Keep working with your doctors till you get satisfactory answers.

Good luck,

Alexandra

SHANNON1231's picture
SHANNON1231
Posts: 53
Joined: Nov 2012

I would definitly ask for a cat scan of your abdomen and pelvis. I had 2 ultrasounds, including vaginal that said I had a cyst and then was told the cyst was gone. then 2 months later started with really bad bloating and I could barely eat or breath. Finally a gastro dr sent me for cat scan and it revealed my tumors and it had already spread thru me and I am now at a stage 4 at the age of 35. Its better to be safe than sorry. Be persistant and get that cat scan!!!

Lisa 00
Posts: 108
Joined: Jul 2009

I would think that the "standard of care" is first a CA125 blood test, then an CT scan.  Those will tell you what you want to know.

Justbnkim's picture
Justbnkim
Posts: 4
Joined: Mar 2013

Hey just wanted to say I too am 33 and have been having some of your symptoms only I had Adneomyosis or uterine fibroids my uterus looked like I was 3 or 4 mos prego so they took it and left ovaries.  My periods were like that too I would have really long painful ones or none at all it was very frustrating.  I have HUGE feet and legs from the swelling that you can push and see a big dent that doesn't go away very quickly.  The did do a D dimer test on me and mine was high but all it told them was theres a blockage somewhere.... haven't got the DR to respond since :(.  The pain I feel is almost like someone just wrapped their hand around something in my lower tummy and just twist until I am going to pass out.  I can not get a DR to listen to me they say because I still have ovaries that I am "ovulating".  It's not like cramping it is like grr no words can describe it at all.  I have been puking or going to the bathroom almost immediatly after everytime I eat yet still managed to gain weight and look even more pregnant in my tummy.  I just wanted you to know I am here with you and you are not crazy.  STAY ON TOP OF THIS!!  I am going through Dr.s to find what I need to know.  Most of the PC or GP (regular day to day DRs) dont listen and try to medicate or wave off as something not to worry about my BODY SAYS HEY DUMMY SOMETHINGS NOT RIGHT HERE~ LOL   Anyhow if you ever just wanna talk you may email me justbnkim@yahoo.com I will listen to you :)  HOPE YOU GET ALL THE ANSWERS YOU ARE LOOKING FOR AND IT IS SOMETHING SIMPLE :)  PRAYING FOR YOU

 

Kimberly

pinky104
Posts: 62
Joined: Feb 2013

I have a history of uterine cancer (the same type that causes ovarian cancer) so I don't know a lot about ovarian cancer itself (although my cancer did spread from my uterus to my ovaries, the omentum, and the small intestine).  However, before I retired, I had a friend at work who, when young, was skinny.  Within a month, she grew extremely fat.  She stopped eating and just had one soda a day and still gained weight.  She still is way overweight, and is now probably in her late 30's or early 40's, and I'd guess she must be between 250 and 300 lbs.  She was diagnosed with polycystic ovary syndrome.  I know she's had trouble walking at times.  I'm not sure if she has venous stasis or not, but she appears overweight all over her body. She now eats more than some people but not as much as others at work who are smaller than she is. I don't know if there's any chance that you might have this, but I thought I'd mention it.  It could also be malignant ascites like someone else mentioned, and they may have to use a needle to draw off the excess fluid.  Someone who posts on the uterine cancer discussion board had to have this done.

mopar
Posts: 1950
Joined: May 2003

This is unimaginabe that so many medical professionals who have assessed you cannot come to any conclusions or at least step up the process in a hurry.  Everyone here has given you some good advice.  As for a CA125, it will undoubtedly be elevated right now, regardless of the presence of cancer or not.  But if you've never had one, getting one now will be a good baseline for you.  And, I agree that this is not necessarily cancer.  But whatever it is, it warrants someone getting on this now, and not dragging this out for you as they have been.

My thoughts and prayers to you.  Please let us know what you find out.

(((HUGS)))

Monika

 

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