Decisions, need help please. Thank you!

Hi! My name is Lizzie. I am 46 years old. I was diagnosed through a CT with having a large mass on my left ovary. A vaginal/abd sonnogram was also performed, along with CA-125 and CEA blood tests. My CA-125 was 17 and CEA was 6.3 (elevated). However, these tests can produced false/positives as well as false/negatives.

My gyn told me last week (I have another appt tomorrow morning to go over all my test procedurs/results), that I have two options: remove the left ovary via lap surgery and hope for the best..recovery time 2 weeks, that is if results are negative, if not back in for more surgery.....or have both ovaries, fallopian tubes, uterus and pelvic lymph nodes removed.

Golly...I am still blown away by the above news regarding my mass. All this time the docs kept thinking it was IBS (Irritable Bowel Syndrome), since I have been having food intolerances starting last year, pain/cramping after eating certain foods, and pain/cramping with bowels. I have very healthy eating habits, I perfer eating fruits/veggies, fish, chicken etc... However, since last year...I was getting horrific pain whenever I had a bowl of cereal (milk) or ate a slice of pizza. So, I eliminated diary products, and still kept getting pain/cramping. Since, then I have had a colonoscopy, endoscopy (to rule out Celiac disease), numerous stool samples (to rule out parasites etc...), blood work, 2 CT's and none showed anything...until my most recent CT (perfomed 1 week ago). My first CT was performed June 2003, which results were negative.

So, not sure what to do. I certainly don't have 6 weeks of sick leave, we only get 10 days per year nor do I have any extra money socked away....so not sure what to do. I now I can pray & hope for the best. But, don't know whether I should just get everything removed and be on the safe side.....in case the mass is deemed malignant.

Thanks for any advise. I really do appreciate it and just need to make up my mind very soon.

Take care everyone.

Sincerely,
Lizzie

(((Lizzie))):

You're in the same situation I was in two years ago -- surprise, giant mass, high CA-125 (mine was 200 -- yours isn't that high, I see), etc.

I was referred to a GYN-oncologist -- and if I hadn't been, I would have referred myself. If there is any question that this is a malignancy, they are the ones to do the surgery. The outcomes are so much better! For example, one surgeon I saw for my second opinion (who would have done the operation as my GYN doesn't do surgeries -- she's on the baby side of things) said that these cysts "always rupture." Well, malignancy or endometriosis, rupturing the cyst would have seeded it throughout the pelvic cavity. The GYN-onc got it out whole. Mine turned out to be due to stage IV, untreated endometriosis (I knew I had endo, just not how bad it had gotten -- you'd think the pain would have told me, but NOOOO...).

However, this decision you face should only be made AFTER consultation with a GYN-oncologist. Even ACOG says that if malignancy is suspected, the oncologists should do the surgery. In part, it's also because they have three more years of surgical training -- if you're dealing with the possibility that this is unchecked endo, the surgery can get pretty complicated even in the absence of malignancy. In fact, all my organs were fused together; removing just an ovary was NOT an option for me.

I work per diem -- if I don't work, I don't get paid -- and when I first got diagnosed, my thinking was similar ("I can afford a laparoscopy and ten days off work, but eight weeks? "). And in fact, during that time off, our car was stolen and we had other financial demands. But we made it through -- and now that I've had my hyst, so many of those previous symptoms are GONE. My results weren't perfect (with endo, they often aren't) but my pain levels are still SOOO much better than they had been in years!

Please, go see a GYN-oncologist. With elevated tumor markers (even though false positives are common) and this sort of cyst, they are the ones to help you make these decisions -- and to do the actual operation for you.

Big s as you deal with this!

Audrey

Audrey,

Thanks so much for replying to my post!!! Hugs to you too!

So glad to see your reply this morning because I have a doctor's appt at 9:00 am (with my gyn). I am going to get my last test result (I was scoped for possible small intestine problem....CEA marker elevated) Anyway, I am going to ask my gyn for onco gyn(s) that he knows.

You are absolutely correct about their training. As you mentioned with your endo, you never know until the surgeon performs surgery and as you stated the onco is at least trained to make the proper decision(s) and to operate. So glad that you had a competent doctor.

I used to work per diem as well. But, I needed health insurance, my husband's isn't that great & too costly for two people to be on his policy. Anyways, we are going through financial difficulty as well . Gosh, cannot believe you got your car stolen while you were going through all this!!! Sorry to hear this.

But, I am so glad everything is much better. I am hoping for the same. Maybe some of this pain will go away or "What the GI docs thought was gastro problems".....won't know until I have surgery, will I. But, as you mentioned...if I need to be off...I will find a way to make it. I just want to get a GOOD onc-gyn. Hopefully I can be referred to one this morning once I get my results. You are absolutely correct about having a gyn doing the procedure...I want someone who is trained in that area.

Again, thanks for replying Audrey. I needed to "hear" this. Take care & lots of hugs to you.

Lizzie