Anyone have OVCA + "mucinous neoplasm" or "pseudomyxoma peritonei"??

Hi -

I have/had ovarian cancer that was discovered after my TAH in June. Then after a second surgery (debulking & staging) they found no evidence of the ovarian cancer in anything else. HOWEVER, my appendix looked "suspicious" so they removed it and found some cancer inside. Also, I had blobs of mucus in my abdomen, none of which was cancerous but all of which looked "suspicious".

My obgyn/onc says this is VERY rare and he does't even know any docs with patients that have had this. My oncologist said pretty much the same thing. I think no one's willing to admit that they're not sure what to do.

My obgyn/onc says "it's gone now!" because he got it all during surgery. My oncologist sort of shrugged and said it could come back. She didn't have much to say about it either. Sheesh. [Thanks--that helps soooooo much!]

So, if any of you have this, have heard of this, or know anything about this, your info would be greatly appreciated.

My partner and I have done extensive research on the web, but most of the stuff is either for other medical professionals or we can't tell for sure if it's the same thing they suspect I have/had. I couldn't find any threads here that discussed this mucus goop either.

THANKS!

Ghita

(Starting Taxol/Carbo this Thursday!)

Hi Ghita

I gather from your post that your ovca was something like

mucinous adenocarcinoma?

In which case the appendix is frequently involved and is removed whenever a mucinous adenoma (benign) or adenocarcinoma (malignant) is found.

Im not quite sure why your Drs are so surprised by this, because I have been researching this at great length following my diagnosis, which is borderline, and the appendix is frequently referred to as being involved.

Sorry but cant help about the mucous goop, unless it was something that came from the appendix.

I have posted a link that discusses epithelial cancer, and the appendix is referred to in this. Do a search on borderlines and aussieone, and it should come up.

Good luck with all this.

Ghita,

I went to Johns Hopkins for a second gyn-onc opinion before treatment for endometrial cancer in 1999. You might want to consider taking or sending your pathology slides and surgical and pathology reports to one of the major cancer centers for a second opinion.

If I had something my health care team was telling me was very rare, I would want to obtain the expertise of one of the major cancer centers in the country, where they are likely to have seen more cases of just about everything. I would think another opinion might increase your comfort level and ensure that nothing was overlooked in your case.

Best of luck to you.

MoeKay

MoeKay -

Thanks. That's good advice. My partner and I were thinking about getting a second opinion, although I'm sure that would be after chemo starts. I hadn't thought about sending the slides, etc., to a major cancer center. [Duh!]

I know there's one kind of ovarian cancer that involves mucus, but the way the docs are talking (hinting, really), this might be a totally different secondary thing. It's so frustrating, not having enough info!

Thanks again!

Ghita

Ghita,

It is very important to have a correct diagnosis. You should get a copy of the pathologist report so you know exactly what type of ovarian cancer you are treating.

The Johns Hopkins website has a brief description of more that 10 different sub-types of ovarian cancer

http://ovariancancer.jhmi.edu/typesca.cfm

A second pathology opinion is very easy to do - and there are a couple of pathologists in the country who really specialize in ovarian cancer - PM me if you want names. No new surgery is required - the tissue removed during surgery is just examined. My second pathologist then had a conference call with my gyn-onc and I

Good luck!

Dorrie

Hi -

Thanks to your encouragement, I spoke to my pathologist, who said there was NO CANCER found anywhere in the second debulking surgery. He said I should still be a Ia.

I'm still working on the PMP v. mucinous cystadenoma of the appendix and finding someone who can help me wade through the info. (Might have a connection at the Mayo clinic who works on PMP stuff.)

Anyway, I truly wouldn't have gotten this far without you.

Thanks so much!

Ghita

(Ia again--according to pathologist!)

Dear Ghita.....here are a couple of websites that may be able to help you.

http://www.surgicaloncology.com/pmp.htm

http://www.thedoctorsdoctor.com/dise..._peritonei.htm

http://ovariancancer.jhmi.edu/apmt.cfm

Hope this helps.

Bertha

Ghita,

I would get a second path opinion ASAP - make sure that typo wasn't a thinko - you know docs can get brain fog too




Getting a second path opinion is really straightforward. Given that your doc says he's never seen a case like yours, I'd think he'd welcome the second opinion.



Dorrie