PRIMARY PERITONEAL CARCINOMA

[JoanyRI]

In 2003 I was diagnosed with uterine cancer, had a total abdominal hysterecty with salpingo oorphectomy...was told two weeks later that a second cancer was found...PPC.  I did a round of chemo and so far I have been in remission for 18 months.  I see my oncologist every 3 months.  Can someone please tell me what the prognosis for this disease is?  And what came first...the uterine cancer or the ppc?  My doctor tells me that if they never did my hysterectomy I might not be here today.  I am still worried to this day. Remission does not mean cure so will I ever be cured of this? What is the prognosis for those of us with PPC?  I have Stage 2.  Thanks to all you read and respond.

[MickeyVicki]

What does your doctor say in answer to these questions?   I am really curious.

[JoanyRI]

My oncologist has told me that PPC is a type of Ovarian cancer, because the peritoneum and ovaries are made of the same identical tissue.  He also says that ppc has a poor history of long-term remissions and that the percentage is low for survival...but he never mentioned the percentage 2 me.  He says I will have to be watched for the remainder of my life.  I need to find someone out there who has Stage 2 ppc like me, someone who can answer some of my questions on a more woman-to-woman basis.  I am thrilled to be in a remission (19 months) but scared think that can change even after years of being in a remission.  My oncologist also said that sometimes cancer cells slip and that is what happened to me, they slipped from my uterus which was full of cancer into my peritoneum.  But what came first is what I need to know...the cancer in the peritoneum or the cancer in the uterus...My CA-125 have all been below 11 for all these months.  And I was told that had I not had that TAH (total abdominal hysterectomy) I would not be here today.  That is a scary thought.  It is important to me to know every single thing I can about my cancer.  My oncologist is a wonderful doctor and he wants me to concentrate on getting on with my life, well hello!!  This is my life I am talking about. I go back in November for my check-up with a few more questions for him but in the meantime if anyone can help me, I would be very grateful 2 u.

[Leonaiz]

Hello there...it seems we have something in common, something nobody likes to talk about.  The "C" word. I got online to find the same answer to "what came first".  Last week I had the exact surgery, however my scenerio was just a little different.  I went in today for my post-op and to have my staples removed and the Dr gave me the news I was looking for; he said that pathology showed what he had suspected minimal invasion and that I was cured and no chemo/radiation would be necessary.  I was the news I had been praying to hear; however when I got home I had to call the Dr back because I was so estatic about the news I forgot to tell him I was having trouble with numbness in my right leg since the surgery.  It was then he told me that pathology called him back after I had left his office this morning to let him know that cancer was found in one of my ovaries also. My Dr. said that until he gets the full report the jury is still out on this one.  It has been one hell of a roller coaster ride for me today and I'm just now trying to investigate which cancer may have come first.  My surgeon was wonderful and I know he did the right thing for me removing EVERYTHING but now I must ask for a referral to a gynelogical oncologist because now I need more information and to see what kind of danger I may still be in and what kind of treatment(s) may be necessary. Please keep in touch with me on your journey to regaining a healthy life and I promise to keep you informed of anything I find out that would could also help you;  we MUST unite with our cancer stricken sisters and share any and all information with those who may be going through the same thing right now.
Kind Regards, Leonaiz

[anitaama]

I was diagnosed with  Primary Peritineal Carcinoma in late July.  I had a hysterectomy Aug 13th.  From what my Dr says is that It started in the lining of the abdominal wall, dropping down on my femal organs.  I started Chemo on Tues.  I have two ports.  One in my chest and one in my stomach.  In the chest port goes the Taxol that runs for 24 hours.  When that is finished they due the stomach one of Cisplatin.  In 8 days I go back for the Cisplatin.  I believe 8 days I go back for the overnight one again.  There will be 6 rounds of this.  I hope I can handle it.  Anyone else have this type of treatment?

I would love to hear from somebody.
Thanks
Anita

[jdbobo]

Hi Anita,

My Mom was diagnosed with PPC in May and is currently on the IP/IV chemo regimen you are speaking of.   She is almost finished (yeah!)...her 6th round of IP/IV comes next week.  It hasn't been fun or easy, but she has been able to make it through the treatment on schedule.

The IP/IV  treatment is typically a 24hr IV (intravenous) dose of Taxol, which usually needs to be done in the hospital because your doctor's office isn't open overnight.  This is  followed directly by IP  (intraperitoneal) infusion of cisplatin before you leave the hospital on day 2.   On day 8, you will get IP Taxol -- this can typically be done in your doctor's office since it only takes an hour or two.


The IP/IV chemo is more intensive than the standard treatment, but several studies have shown it has significant benefits.   Good luck.  You can do it!

[LindaF]

What I'm not understanding is that if your doc feels the uterine cancer spread to the abdomen, then you are dealing with metastasized uterine cancer, not PPC. In order to diagnose you with PPC, they must have pathology results showing it's an entirely different cancer then the uterine. Get those reports so you know what you are dealing with as they have different prognosis.

Remember, Lance Armstrong survived because even though is cancer spread to his brain and his lungs, testicular cancer is quite sensitive to chemo drugs. Even though was in the brain and lungs, it was still testicular cancer cells.

Get your reports and study them and ask questions.

[moonthecat]

I just want to say what a relief it is to find all of you - I dont suffer from PPC but my wonderful mother was told in Aug that she has PPC and my world has been turned upside down....she has been going through chemo since Sept (every 3 wks for three time) it appears the chemo is working but mantaining the lesions but it is not doing what they had hoped and next week she will go back into the city to discuss the plan going ahead. When first diagnosed she saw three doctors in NYC at three diffferent hospitals - each one told her she would win this first battle with PPC but that it has a high risk of coming back....I am at a loss for words really, she is everything to me and has always been the rock in our family....I just keep praying that there is a some miracle treament out there for her

[Rosirosae]

My mom was recently diagnosed with PPC. On January 28 she went to surgery on the hypothesis she had an ovarian tumor but what she really had was Epiplon tumor (metastasis of a PPC), even the appendix had cancer and was removed too.  After two weeks she started the I/V chemo (platin) but I'm worrying because she had ascitis (liquid) in the abdomen.  Does anyone that is in remission did had liquid once before?
We live in Peru, South America and I'm sure that IP (intraperitoneal) infusion of cisplatin is not done here.
I lost my father 5 years ago due to a prostate cancer and I thought this was not ever happened to me again!
If someone has any information that you think can be valuable at this time, please share it with me.  Thanks in advance!

[PPCFighter]

Best wishes to your mothers, you, and your families