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.

[heartbroken912]

A related discussion, primary peritoneal cancer was started.

[mitch152]

A related discussion, Undiagnosis of OVarian Cancer was started.

[JC145]

Sorry, the above message was for Chopps ...

[JC145]

I was considered optimally debulked .. BUT the surgeon left spots on my mesentary and diaphram because removing them would have caused more damage .. and the theory/hope is that the chemo would kill them off.  It appears that has been the case.  It doesn't mean that sooner or later, rouge cells won't start up.  I have a pea size lymph node near my liver that has been stable for 3 months .. when will it take off and spread .. no one can answer.  Try not to focus on the "sub-optimally" debalking.  Focus instead of getting her the best treatment available.  At this point, it doesn't matter what was left behind .. just what can be killed off with the chemo.  She's going to have a rough road so try to focus on the best possible outcome and doing all that you can as a family to smooth out the rough days of chemo ahead.  I will pray for your Mom and family.  Judy

[chopps]

My mother got home from the hospital 2 nights ago after a sub optimal debulking surgery for primary peritoneal cancer/ovarian cancer.  She had a bit of a rough stay of it, having a pulmonary embolism (two blood clots in the lung.)  She is doing well at home and just healing.

I have not read too much on suboptimal debulking surgery, most information is about optimal debulking.  We, of course, are disappointed in the surgeons decision to suboptimally debulk.  He said that although he is a radical surgeon, he felt my mother had a longer chance of survival by leaving some of the cancer because it was attached to the intestine and the bowel. It had not penetrated the bowel.  I am waiting for the op report and pathology report.

Can someone comment on suboptimally debulking, what to expect and the importance of the oncologist.  Also, questions we should ask the oncologist...she has a consultation on Thursday.

I know  this cancer can come back very fast when optimally debulked...with a suboptimal debulking, imagine even faster.

Still looking at getting a second opinion, also.

Chopps

[JC145]

No one can give you a time frame on what to expect.  Everyone is so different.  I don't know how heart and lung problems will factor into chemo.  That is something you should ask the doctor.  I was a smoker and got through the treatments.  Wish I could offer more, but as I said above, everyone is so very different and their reactions to chemo are also different.  You have a certain set of side effects ... but not everyone experiences all of the side effects.  Neuropathy is really bad for some and was manageable for me.  Good luck, Judy

[renored]

my  mom was diagnosed today with ppc stage 4.  she has been filling with fluid in her belly.  the chemo prescribed is carboplatin and taxol.  she has badly damaged lungs and heart from years of smoking and stress.  the chemo treatment really scares her and she is thinking of skipping the treatments.  what is the end of ppc like without treatment? what might she experience if she decides to take the treatment? any answers out there? thanks

[JC145]

I was diagnosed with PPC stage 3 in June 2006 and finished IP chemo 11/06.  My tumor marker went down to 8 after chemo, but started rising immediately .. January 2007 was 17 I think.  Anyway continued to rise with No Evidence of Disease (NED) and hit over 100 by July 2007, but still NED.  So, my MD put me on tamoxifen (works in 10% of ovarian cases & it worked for me) and my CA began to drop and hit normal, but has been rising again.  I have a 1/2 inch lymph node found just this past May that has been stable for 3 months....still no heavy duty chemo .. just tamoxifen.  So .. after this long story .. I have basically been doing very well for almost 2 years since finishing chemo.  I don't know how long we will wait or how high the CA will have to rise before we resume chemotherapy.  The point is, you can't tell what will happen in the future.  You are best to follow your GYN/ONC 's advice (and it should be a Gyn/Onc).  I had Cisplatin and Taxol and great meds for nausea.  It wasn't great by any means, I had good days and bad days .. but I got through it and have been so good since.  If/when I go back into chemo, it will be Carbo/Taxol since it's been about 2 years.  It's basically the same treatment as the first time.  I am hoping to hold off all chemo until "at least" after the holidays.  I only had the port in the belly for the IP chemo... but my veins did give me trouble some days when getting Taxol, so will definitely have a port in the shoulder next go round.  
I wish you and your Mom the very best luck and will pray for you.  Drop me a line if I can be of any help.  Judy

[chopps]

My mother was just diagnosed with PPC last week.  Surgery is this Thursday, September 25th.  I am looking for as much input, knowledge and recommendations as possbile.  She will most likely go with IP, however, they have talked of only one port and that is in the abdomen.  No mention of the shoulder.

This cancer seems aggressive and I have read to many stories of reoccurance in the first 3 months.  She wants the best quality of life for as long as possible, as everyone does.

It's a tough decision to know what is the best avenue to follow.

Any comments?

Thank you for all your posts and good luck to those of you suffering from the disease.

Caren

[StillFighting]

I have ppc was diagnosed in 2001, been fighting it off and on for 9 years now. You can't go by statistics as everyone is different.

[Veronica1967]

Do you know if PPC can be diagnosed with an abdominal ultrasound or abdominal CT? I've had both tests and results were negative. I had a total hysterctomy 2 weeks ago and was found to have a...

..SEROUS BORDERLINE TUMOR, LEFT OVARY MEASURING 3.0 X 2.0 CM AND DOES NOT INVOLVE THE SURFACE OF THE OVARY.

Not sure if this means the tumor was INSIDE OR OUTSIDE my ovary.

I have had and continue to have feeling of extreme bloating in upper and lower abdoman, belching, nausea, left flank pain and my girth has increased over the last 6 months. One day I woke up and could'nt fit in any of my pants. I can also feel nodules in my abdoman and 2 of the nodules are painful when touched. In learning about borderline tumors I came across PPC and now want to investigate more into it with my DR.

Any advice or knowledge about this would be appreciated.

My prayers are with all of you. I am so thankful for this site. Take care everyone.

[Imafighter]

I was diagnosed with PPC in April 2005.  After 12 rounds of chemo (6 treatments outpatient and then 6 treatments in the hospital (the port in the chest and stomach as mentioned above by anitaama)) I was in remission for 2 years.  I was told in March 2008 that my cancer was back in the form of a tumor between my pancreas and stomach.  I've already had 4 treatments out of 6 of carboplatin, gemcitabine and avastine (avastine is a study drug).  I'm glad I went through treatment the first time.  It was rough but my family got me through it.  Then I got to spend 2 "healthy" years with them.  Now, they're helping me through this next bout of treatments.  I don't know the life span of someone who chooses NOT to have chemo.  I also don't know the life span of someone who choses to HAVE chemo.  I'll just chug along until the good Lord decides to take me or someone finds a cure.  Good luck with the decision you've made and God Bless.
Imafighter

[trish54]

If you get an anwer would you e-mail me on it... I have been hesitant to do any chemo also, and with the latest ct scan there are lesions on my liver... Want to get some answers before my appt. with gyn/onc.

[trish54]

Don't want to scare you but thought this info would be pertinent... I have had CA-125s done regularly with my blood work as my mother is a 2 time breast cancer patient.
I have not had any elevation, but just had a hysterectomy for uterine cancer.. They are watching me now because when I had the D&C and hysterscope to check out the uterus, some malignant cells were pushed out of the tubes into the abdomen upgrading me to stage IIIA..  Just had a ct scan and CA125 and no rise in numbers.

[MerryMary1]

I have end stage primary peritoneal carcinoma, diagnosed several weeks ago.  It is my choice to opt out of chemo and enjoy my time with family and friends.  I would like to know, however, an average life span without treatment and no one seems to know or is willing to voice it.  

[PPCFighter]

Best wishes to your mothers, you, and your families. I suggest you do a couple of things: online research to learn as much as you can and meet with your mother's doctors to learn about the treatment plans, their diagnoses, their prognoses, and whether they are eligible for clinical trials (you can search for the trials online; I have seen some recently online). PPC is treated like ovarian cancer and follows a similar progression. Studies have shown that while PPC can be put into remission with the first round of chemotherapy, there is a 70-80% chance of recurrence at some point. My own mother was diagnosed in May 2003 and sadly passed away in May 2005. She did get 24 months after her diagnosis which was amazing because she was in poor health otherwise. She was a real fighter and very brave. Her doctors did not recommend debulking surgery but she had two pretty decent years by being very aggressive with chemotherapy treatments. Each person's outlook depends upon the stage PPC was found and treated, so it is very important that you understand all the factors by talking with the doctors. It is also important for patients to be treated by a gynecological surgeon if surgery is an option as well as a radiologist oncologist because they typically have more experience with PPC.

You may want to ask your mother's doctors about your potential to develop this disease and whether you should be tested for BRCA. Studies have shown in rare cases this type of cancer can be genetic. I have not been tested but think that there may be a family connection because my mother's aunt (on her mother's side) passed away in the early 1960's from "stomach" cancer. Who knows with the improved diagnostic abilities available today if she would have been found to have had PPC? I don't know but am not taking any risks myself. I ask for a CA-125 test annually from my doctor. I have a baseline, and we measure against it each year to determine changes.

The best to all of you. You will be in my thoughts and prayers.

[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!

[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

[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.

[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!

[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

[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

[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.

[MickeyVicki]

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