psammocarcinoma

[Diana1959]

Dr. Goodman,
       I had a complete hysterectomy in Oct. 2006 and it was discovered that I had psammocarcinoma.  It was discovered on both my ovaries, tubes, and uterus.  In Jan. 2007, I had a debulking/staging surgery.  My lymph node biopsy was negative, however the biopsies of my peritoneum, omentum, and the abdominal wash were all positive.  I tumor the size of a golf ball was removed from my omentum which was also positive.  My CA125 is less than 1.  My oncologist said that chemo doesn't work on this type of cancer.  So, for the past yr. he has done CT scans of my chest, abdomen and pelvis every 3 months, and they have been normal.  He has now decreased the CT scans to every 6 months.  He said that although I have tumors everywhere they are microscopic and the CT scans will show them if they grow bigger and then he can remove them.  He has written articles about this type of cancer so I assume he knows what he is talking about.  However, the idea that I still have cancer growing inside me and nothing is being done except watching makes me uncomfortable.  I don't want chemo if it won't help, but I feel like I have a ticking time bomb inside me and I'm just waiting for it to go off.  What are your thoughts?

[Diana1959]

    I have had several labs look at my pathology and they all say the same thing.  My oncologist (who did not do the surgeries) says I am stage 3A.  

[Tybear]

I was originally thought to have psammomacarcinoma, but it turned out to be Micropapillary serous carcinoma. Mine too, is slow growing and by definition, shouldn't be aggressive, but for some reason it is. My abdomen was full of psammoma bodies, which is why they thought that's what it was, but after several opinions on the pathology, it was finally figured out. Your right, there is much discrepency about how to treat this - because it's slow growing, it tends not to respond to conventional chemotherapy treatment. Many people take a watch and wait approach, depending on what stage it was diagnosed at. I was stage 3c, so that wasn't really an option for me. My advice to you is, knowing you have such a rare type of cancer, it may be in your best interest to have a second, even third opinion done on your pathology slides. I wish you much luck...
Take care,
Becky

[Diana1959]

Yes, I posted it to the Ask forum.  I am new to this so accidently posted it here.  Thanks for your info.  I already knew this info, I've been checking out as much as possible on the Internet.  Doctors disagree as to treatment, which kind of leaves the patient in limbo, not knowing who is right...  I know it is usually a slow growing cancer and non-aggressive but that it can change.

[SimplyStar]

Dr goodman is located on the Ask the doctor forum, she does not usually  check on these posts,  but what I could find on your type of cancer seems like it  has a good prognosis  

Psammocarcinoma is a rare form of ovarian cancer associated with a favorable prognosis. However, the rare incidence of this disease and inconsistent biological behavior can confound the diagnosis for the treating physician.

I would suggest you copy and paste your questions to that forum.   Good Luck