I don't know what to think....

[Amos73]

1/25/10- I went to the Dr complaining about feeling very bloated in my upper ab. and my legs were so swollen. Dr thinks I'm just getting fat and I have to much strain on my heart and I have sleep apnea (which I do). 2/2/10- I can't breath & I feel like I am drowning, I go back talk w/ NP she gives me a symbicort inhaler and antibiotics and sends me for a chest x-ray. She says everything is fine call if you don't start to feel better. 2-10-10 I feel worse. Go back to Dr, he says "My you have been here a lot."  He give me another round of antibiotics and albuteral (they think I have asthma) 2/22/10- I finish my antibiotics and call the office, I'm still sick I need a specialist! Dr's nurse calls me back asks if my swelling is better - No it isn't. They send me for a CT w/ contrast. They have me go straight to Dr's office after the test where Dr tells me I have fluid on my R lung and some fluid on Ab. Why don't they listen to me... He still thinks its my heart and wants to do another CT to look at my pelvis and an Eco of my heart. I get CT done and go home. I call the next day and I am told I need to come in immediately. 2/25/10- I have a 9.2cm mass on/in my L ovary. Go to see GYN Oncologist, awesome he actually hears me and thanks me for coming in so quick (WOW), He gets some blood then sends me to get some of the fluid off my lung and test for cancerous cells in the fluid.

Does this mean I have cancer? I feel so stupid for not knowing what this means.
Everyone around me is so gentle with me like I am so fragile.
It's probably cancer, right.
What are they going to tell me next?
Can anyone give me an idea of some things to expect?
If its not cancer what else could it be?

[Amos73]

Wow what a week.
I had surgery on 03/06/10. When we went in we wern't sure what I had going on in there and what he was going to leave me with after the surgey. The nurse told my husband that I should be ready to eat around 9am and they would have me up and moving at least by late that evening. My surgery was @ 7. I came to choking on my air tube in my throat (had some trouble breathing during) and looked up to see the clock and it said 11:25, I knew he had taken everything. He did, the mass was still in my left ovary (CONFINED, good news) it was approx. the size of a football.. My right was showing the beginings of the same. There was a black oily substance in my lungs, he called it something that started with an M.  The first lab says the cancer is borderline, but my doc sent it to Mayo for a second op. just to be sure. I went home after a couple of days, but my right arm was swollen and sore and itchy. Doc sent me to get an ultrasound to be sure and ofcourse I had a clot that was blocking my arm and alot more floating around, so I was back in the hospital for a night. Back home with shots every morning for the clots. Wierd air bubble in my head, feels like i have water in my right ear.
Beleave it or not I am feeling better every day.
I felt better when Dr.K said it was boarderline, but the clots really scared me. Weird I know. I have had one emotional day, My hubby and I had tried for 7 years to have another child and were on 3 kinds of fertility drugs (probebly a big factor in this). We were already thinking of adopting but right now I am thinking of recovering.
I'm still really mad at my other Doc's for not seeing the signs. They were so clear.
I want to do something to make sure other wemon don't go threw what we have. This is crazy, there isn't enough out there that talks about this. We all know how to check for lumps but not to listen to our bodies. And when we know something is wronge and our body is talking to us, screaming "hay this doesn't feel right" our Dr's MUST listen. The older you get the more you know when somthing is off.
I know my body and I listen to it.

[jpwildflower]

Hi Amos,

I'm sorry this has been such an ordeal for you!  I'm glad you finally have a Doctor who listens to you.  My mom's doctor's - including her surgeon- for her initial diagnosis, gave her the runaround too, until the pathology came back.  Hopefully, when you have surgery, they can freeze a sample of the mass and be able to diagnose it then.  If it is cancer (it is true that many masses are benign), after you recover from surgery, most oncologists recommend a platinum based chemotherapy (Taxol/Carboplatin is common).  Chemo is no picnic, but there are many meds out there to help with side effects, and my mom was able to keep her energy up with an improved diet, massage, and acupuncture.  We are big believers in using both traditional and "alternative" treatments.

Hope things go well for you - you will be in my thoughts.

Joanna

[sheri938]

where did the oncologist  take the fluid from to test? from your stomach or lungs or where?they discovered it in the fluid they took from my lungs,-
how about the doctor that takes care of your diabetis? have you talked to him- has he talked to your oncologist? they should have some  communitcation?
what type of surg is he planning on doing-
how does he explain your ca125 #;s
i don;t know what meigs ? is i ll have to look it up,. have you considered getting a second opinion?
have you asked him what he has in mind for your follow up treatment?
does he have a team - his staff r.n.'s another m.d.-do you have an gyn  other then th e oncologist?
you sound  like a strong person- its scarey? yees but the greatest thing you can hear is someone saying-"ok dear its over" i wish you all the strength and  luck and faith and fam;ily and friends do help a lot!! my best to you

[Amos73]

Thanks for the all the info, WOW.
This has been so frustrating and yes a nightmare.
It's labeled as a "silent killer" because when you want someone to listen they won't.
My oncologist said my fluid didn't have anything in it BUT my CA 125 # is 1882! He said its either cancer or Meigs syndrome, but in his whole career he had only seen 4 or 5 wemon with Meigs. I am trying to stay positive with this news but the odds arn't that great.
He wants to do surgery on Sat.
I am scared becuse I am also a type 1 diabetic and I don't know how long the recovery will take for me and how my blood sugar is going to be...
I have been getting so much support from my family, coworkers and people at church, I am so thankfull for that. Again thank you all for your prayers, wisdom and well wishes.
I will take whatever I am told and go with it.
It's in God's hands.
Amy (Amos)

[sheri938]

FIRST LISTEN TO YOUR M.D THE OCOLOGIST-- BUT THIS SOUNDS LIKE THE NIGHTMARE I WENT THROUGH BEFORE THEY DIAG ME- I WENT TO THE M,D SEVERAL TIMES BECAUSE I COULDN'T BREATH- AND I KNEW I HAD SOMETHING IN MY LUNGS, AFTER ABOUT 4 CHEST XRAYS  AND AN INHALER- I WAS ADMITTED FROM EMER ONE NIGHT WHEN I REALLY COULDN'T BREATH-THEY TOOK FUILD FROM MY LUNGS OMG, SOMETHING I HOPE I NEVER HAVE TO GO THROUGH AGAIN- BUT YES THEY CAME BACK AND TOLD ME I HAD OVARIAN CANCER AND IT HAD SPREAD AND ASIGNED ME TO AN OCOLOGY TEAM- -I CHANGE MY PRIMARY CARE M.D. AND THE OCOLOGY TEAM REALLY DID SAVE MY LIFE-MY STOMACHE HAD TO BE DRAINED OF FULID,- I WENT FROM 155 TO 103 IN 3 MONTHS - NO BUDDY LISTENED TO ME UNTIL I TOOK A THEN AND NOW PHOTO, SEE PHOTOS., I HAVE BEFORE AND DURING PHOTOS-POSTED- HAVE THEY DONE A CA 125 - IF NOT REQUEST ONE-  IF THEY WON'T DO IT GET A M.,D THAT WILL..GOOD  LUCK -  I'LL TAKE TO YOU SOON .EXCUSE MY SPELLING- I ALSO HAD COMPLICATIONS OF HEART PROBLEMS

[Amos73]

Thanks ireneo,
I actually have been useing a CPAP for 1 week and I love it.
I go back to get my results on Tuesday. They havn't told me anything about what they may need to do.I will be sure and let you all know as soon as they tell me something. I really need the wisdom of others. I have NO experience with anything like this and no one in my family has ever had anything like this either.
Thanks again.

[ireneo]

This runaround is not unusual. They seem to think any abdominal bloating or pain must be bowel related, heart related, something other than ovaries. Not sure why it tends to be the last thing on the list they check.

Most cysts/tumors on ovaries are benign. I had a 10 cm cyst on my ovary. Not a great thing to have at my age but it turned out benign. In my case I thought all the bloating and fatigue was heart related since my heart is strange anyway. But it turned out to be my ovary. It came out along with the cyst and all is well.

The blood work is standard. Possibly a CA125 test. But that test isn't very helpful. The numbers can be elevated for many other reasons besides cancer. But they do the test anyway.

Fluid in or around the lung, that's unusual. But they'll be sure to treat that quickly so you'll be comfortable. That could be pleurisy or some other thing.

The sleep apnea should be treated so you don't develop heart issues. Do you use a CPAP?

When do you go in next and do you know what they plan to do? Let us know. The women here are extremely helpful if it turns out to be cancer. They know the ropes. Stay in touch.