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Where to go now?

Radioactive34's picture
Posts: 388
Joined: May 2011

A few weeks past I mentioned that my sister was showing symptoms of OVC or something. She has a mass in her left adrexena(sp)area...lower left abdomen. A pelvic sonogram revealed nothing. The mass was found via CT.

She is anemic and has bathroom issues like no tomorrow. She can eat normally. She did have a thyroid issue but that has been medicated so it is balanced. She finally got her CA 125 tested this week.

The number was 29. The lab told her 21 was normal? I thought 35 was the average norm? Anyways...the not having health insurance bit was driving us nuts. She's finally go it. It will be effective June 1st.

What do we do next colonoscopy? Should I get her straight to an oncologist? I am not sure where to proceed. Her doctor is utterly clueless about this beyond urging urgent action. If the mass is not where a colonoscopy can find it...what then?

I am at a loss.

kimberly sue 63's picture
kimberly sue 63
Posts: 421
Joined: Apr 2012

Maybe more studies. An MRI with contrast of the abdomen and pelvis might be needed to identify this mass more completely.My CA 125 was 29 prior to starting chemo. She might want to ask for a OVA 1 test. This is new, indicated for an ovarian mass that may need surgical intervention. The OVA 1 is extremely sensitive,and looks at the CA125 and four other biomarkers. It can give false positives, but it gives less false negative results. If all else fails, a referral to gyn/oncologist for evaluation. They may want to do an exploratory surgery, and if you are thinking ovarian cancer the gyn/oncologist is the best one to do the surgery. Kim

Posts: 1995
Joined: May 2003

What state does your sister live in? If she lives in SE Michigan, I have a good referral for you.

In the meantime, try to find a gyn/onc in her area. And don't be too concerned just yet about the CA125. This 'mass' could be benign, but still cause the CA125 to go up, as could infection, her intestinal issues, etc. Sometime ago, they changed the 'norm' to 21 or under. But again, it's a good diagnostic tool IN ADDITION to other tests.

My doctor's standard (until further tests such as PET are warranted) is the CT scan. I always get triple contrast (IV, oral, enema). Makes me glow inside, so they can see everything in the pelvis, abdomen and thorax. I had a transvaginal ultrasound before I saw the gyn/onc, but I don't think it's going to give any more info than you already have. And before surgery I had a colonoscopy, even though I had no symptoms.

I know that her insurance may not allow her to see a gyn/onc first, but I'd still try to. I wish you the best, and please let us know how things go for your sister.

With lots of Hugs and Prayers,

lulu1010's picture
Posts: 367
Joined: Feb 2011

I would see a GYN/ONC. I suffered 14 months getting diagnosed. Had severe bowel issues but could eat etc. Had lots of tests. I had one test where I swallowed the camera and it showed a blockage. (I didnt find out till a month later cause the doctor thought the camera battery died so I took it to another doctor who said it was not able to pass thru!) From there they did a "special CT" that zeroed in on that area and found thickening and then did a colonoscopy that showed a mass growing from the peritoneum to the inside of the bowel. (I had had a colonoscopy a year earlier but it was not inside the colon at that time.)If there is a mass why can they not do an exploratory lap to see what it is?

Radioactive34's picture
Posts: 388
Joined: May 2011

There was a ct with contrast done. That was what found the mass. Initially she did have blood in her stool and was anemic. I think that still stands.

The insurance she got was a ppo so she can self refer to the oncologist. I have found a couple and plan to seek them out as soon as we ge the insurance card. It requires a few hours drive but we'll get it done. Once surgery is taken care of and we have a better idea of what is going on then I guess we go from there.

I am just debating whether to do the colonoscopy before the oncologist? I expect the gyn/oncologist will expect to have it done aways?

Kaleena's picture
Posts: 1786
Joined: Nov 2009

Go with Gyn/Onc.

I had bowel issues for over a year and went to my regular physician. Finally indicated to get a colonoscopy - it was good. Still having problems. Started taking motrin on a daily basis (never took before). Decided to see gyn. Did a laparoscopy also vaginal sonogram. Did not find cancer, only endometriosis. Had hysterectomy - found cancer afterwards in uterus and left ovary.

I sought doctors help for over a year. Since it is in the family, I would definitely have her see a gyn/onc. Also, I'm not sure, but can thyroid meds mess up CA125 tests?
Since they already see a mass, I would go for the gyn/onc. Also, as for testings, a CT/PET scan would be great because it could show active cancer, but those types of tests can be denied by insurance. But since your sister has already had a CT scan, they may approve it.

Radioactive34's picture
Posts: 388
Joined: May 2011

She is fighting the idea of just finding out all the way. She is stubborn like a mule. I am pulling on her rope like no tomorrow and my family is pushing her forward. We are so close to the start date of the insurance, 6/1.

She is getting a colonscopy done ASAP and if it is not colon cancer or something diagnosible that way I am dragging her to a GYN/ONC asap. The regoin does not have a GYN/ONC so I am going to have to convince her to go hours away for at least the intial testing and/or surgery. After that the local oncologist can take over.

That is IF she actually has cancer. It is so hard not knowing and having the insurance just out of reach. As soon as the ID # comes in for the insurance, I am going to see if doctors will begin setting up appointments and procedures for when the insurance comes into effect.

Praying like no tomorrow that this is just a benign growth.

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