I was staged borderline serous tumor stage 1C. And you're right, what they did doesn't sound like compelte staging. I was told that I had abnormal cells in the 3rd washing which is why they staged me 1C. They took samples to biopsy from everywhere -- lymph nodes, stomach lining, colon, etc.
Continue to pressure the doctors. And pressure them for that CT scan. Hopefully they are correct in their diagnosis, but if they're not, all they're going to say is that they're very sorry. Bull!
Remember that old joke -- doctors are the only ones who get paid for do-overs (you wouldn't pay a mechanic to fix your car AGAIN if he/she screwed it up the first time).
Thanks so much for your words of encouragement. Yes, I have been to a major center. I tried to tell the oncologist about my concerns:
1. no staging
2. mural nodule with 6mm foci of sarcoma,
3. malignant looking cells in the 5ml of peritoneal fluid that was aspirated (but no washings, and not enough fluid for definitive diagnosis),
4. no biopsies
5. appendix not mentioned in operative report
6. most of tumor comprised of moderate grade intraepithelilal carcinoma with a 10 mm foci of microinvasion (in addition to mural nodule of sarcoma)
He claimed that I recieved MORE staging than needed since I have a "stage 1a borderline tumor." (I had a TAH BSO) I said "how do we know what the stage is???" Also, he claimed that I did have washings done, but when I told him that "No I did not. 5 ml of peritoneal fluid was drained on entry to the peritoneum. That's it. Washings should be multiple and be like 100-200ml of fluid each time. He answered that they are a "lot more aggressive in the States".
What I have read (A LOT) about borderline mucinous tumors with microinvasion and extensive moderate grade intraepithelial carcinoma (EXPANSILE INVASION) with mural nodule of sarcoma and a foci of invasion measuring 10mm in linear dimension.....IT'S NOT BORDERLINE!.
I believe my situation to be unstaged ovarian cancer. I'm having symptoms again. I'm constipated, I can't eat, my abdomen kind of aches,......and I have pressure on my lungs. He told me to eat more fibre. CRAP! I'm waiting for CT scan and colonoscopy. My general doctor said it could be quite a long wait.... I'm getting tired of being my own advocate. I want THEM to take care of ME.
Thanks for listening. I am such a whiner, I know. I just don't want to screw this up. If everything I read in the pathology and gynecoloy journals meshed with what they were telling me, then okay. But when I read my pathology report and my operative report and compare it to what the experts (Lee, Skully, Hart, Roderiguez etc.) are saying, it's just not even CLOSE.
I don't think the "Expert" read my pathology report very carefully. Did he even look at my slides? Or did he just see the word "borderline" that I was diagnosed with here in my little town, and he neglected to read further. He didn't KNOW that I didn't get any washings done. It was like pulling teeth to get him to admit that I would have had washings had my surgery been done in Vancouver at the Cancer Agency. "Don't worry, though, because you're stage 1a!!!!!)
You need to immediately find a gyn/oncologist preferably from a large medical center to which the gyn/oncologist see's a large number of patients. Studies have shown that treatment by a non-gyn/oncologist surgeon has a poorer outcome. The gyn/oncologist has to properly stage you to determine the proper course of treatment. Not too minimize your question but don't get too caught up on the mm of invasion , the definite answer to your question lies within your appropriate/proper staging, unfortunately for reason I do not know it was not done as it should have. You have to have an experinced gyn/oncology surgeon. It is imperative that your lymph nodes(proper amount) are biopsied along with your peritoneal washings. This will all be used as your blue print to further tests/treatment. You have to be your own advocate, be agressive because the squeaky wheel gets the oil.
I wish you all the best
Kevin