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RE: Peritoneal - How do I know

AnnaD
Posts: 4
Joined: Sep 2011

5 years ago I had a complete hyterectomy due to being BRCA 1 and an elevated CA125, I have been fine for years. About 4 months ago I started having vaginal (sorry) pain, not an infection but just pain in that area. That comes and goes now. The last month my stomach has swollen and I have sharp pinching pains in the upper and left sides and the last 2 weeks severe constipation which is abnormal for me since I was always very regular. I had a colonoscopy and endoscopy done along with a chest exray and abdominal ultra sound from my Gastric doctor, they have all come back fine yet the swelling and pain is still there. I have heard of peritoneal cancer and how it's possible to get it even after a hysterectomy. Has anyone had these same symptoms and should I be concerned? I appreciate any advice, Thank you.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I had the abdominal discomfort and constipation and all those tests were negative and finally got a ca-125 and a CT scan that looked closer to one area and they made a diagnosis of peritoneal cancer. They also redid the colonoscopy and by that time a small tumor had made its way into the colon so they biopsied that. However, I had been having symptoms for 14 months so it is good that you are looking into this now. It may be nothing but best to get it checked out right away. Wishing you the best of luck.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

If your CA-125 was elevated in the past, I am assuming that you followed up on that and that it has been in the normal range over the years? Check it again.

This is a VERY difficult disease to diagnose. Don't rest until you feel sure that cancer has been ruled out. Most doctors will make you wait until your belly swells up with fluid...you have to say: "How can you be sure that I don't have cancer?"

There may be tiny malignant implants on the OUTSIDE of the colon that are causing the constipation. A colonoscopy won't find the cancer until it invades the interior lining.

Don't wait. I hope it is nothing to worry about but you need to KNOW that.

Carolen

AnnaD
Posts: 4
Joined: Sep 2011

Yes my CA125 was elevated and that along with having symptoms and being BRCA1 positive I had a complete hysterectomy. After the hyterectomy my CA125 went down to normal and has been ever since. I am going to request another. Thank you for responding.

AnnaD
Posts: 4
Joined: Sep 2011

Thank you, I have an appointment for an abdominal ultrasound, it's the last test the Gastro doctor wants to do. If he doesn't find anything I will go to my oncologist to have him check me out and ask for the CA125.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I had the ultrasound in May of 2010 and was very sick at the time and unable to eat much. The ultrasound was negative and they could not only see my ovaries but measure them. In August when they finally diagnosed me they tried a transvaginal ultrasound of my abdomen and couldnt even find my ovaries due to the "seeding". I wouldnt stop with the ultrasound. I finally was diagnosed when I swallowed the pill camera and the camera got stuck and they did a special CT scan of the area where it got stuck. I almost think if I were you I would just ask for a transvaginal ultrasound or an exploratory laporoscopy for them to go in and look and do some biopsies.
I was very sick and had lost a lot of weight by the time of diagnosis. Just be persistant and let them know if symptoms dont resolve.
Wishing you much luck...glad you are on top of things.

Hugs!

Best Friend
Posts: 222
Joined: May 2011

My mom felt the pain in her lower area like as if she had to hold herself down there to go to the bathroom. She had colonoscopies and ultrasound. her ovary was a tad above normal but they said that was no big deal. All i know is that this went on for like 2 years with her feeling full and stuff. Losin weight. Right before she was diagnosed she had a colonoscopy and they couldn't go all the way in. The tumor had attached her intestine to her wall. And they still sent her for a barium enema and it was blocked. FINALLY, they decided to go in. Here there was the cancer spread all over.
I wish my mom would've told them she was not satisfied. She just figured well, they are docs. You don't have ur ovaries so when u did have them, the cancer cells might have started to shingle to other areas. The seedlings or whatever. My mom had no cancer in her ovary but that abnormal ovary which was barely noticeable is where it all began.
DON'T GIVE UP UNTIL U ARE SATISFIED!

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

It is possible to get peritoneal cancer after the fallopian tubes, ovaries, uterus and everything else of the like have been removed so I think you have a right to be worried. However, the symptoms you describe can be caused by IBS and other bowel conditions too. I suppose cancer is the last thing a person would think about. However, you're BRCA1 positive so I can understand your concerns totally. If every other test has come back negative, so far as I know, the only way your doctor would know how you're doing, is by having doing a laparoscpe and having a look. If your CA125 is normal and everything else seems to be too, your doctor might not want you to have to go through an invasive procedure.

I think if the pain is still there, then the investigations should go on, but only you and your doctor can decide if surgery is the best option at this stage.

With very best wishes for you to make a quick and speedy recovery. :)

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