Primary Peritoneal Carcinoma

what is happening with your mom? my mom was just diagnosed and we arent sure if chemo is the best route? what did you guys do and what stage was she diagnosed at?

My mother was diagnosed with primary peritoneal carcinoma back in 2000. She had surgery and chemotherapy in 2000 and was healthy for the last 6 years. Unfortunately, they just discovered a new tumor so we're going through this again. She really doesn't have any symptoms at this point, they seem to have caught it fairly early this time. We are optimistic. The only advice I have is to hang in there and be optimistic. My mother had a good five years and we're hoping after this next round of chemo she will have more good years. Best wishes.

Hi--I'm 55, and was diagnosed November 2004 with primary peritoneal cancer with metastasis to bowel and ovaries. Had uterus,etc. and omentum removed, and 6 monthes of carboplatin and taxol chemo. I have now been "clear" for 14 monthes, ca125 3, good CT scans. Yes, this is a mean cancer, hard to see on CT scans, so I still worry no matter what.Please, please, don't tell your Moms to "think positive"---let them talk and talk and express everything--pretending to be positive to make other people feel better only adds to the cancer patient's stress level. I'm lucky my husband just let me talk and talk about my fears and anger and whatever I needed to say. Be a good pair of ears and of course, show your love.
Carol in CT
PS I'm a stage 3B

Hello,

I am sorry to hear of your loss and hope you are doing well under the circumstances. My mother was diagnosed a two days ago with Primary Peritoneal Cancer. She was not feeling well and had a couple of MRI's which revealed a tumor. They initially thought it was a slow growing form of cancer but a few days later she started accumulating fluid outside of her lungs and had great difficulty breathing. The fluid was drained and it revealed cancer cells which were also confirmed at the same time with biopsy results. This form of ovarian cancer came as a surprise as she had a Hysterectomy thirty years ago unrelated to cancer. Untreated they said she would only have a few months. She started Chemo treatment yesterday with Taxol and Cytoplatin. We hope with the treatment she has a few more years of quality life & your posting gives me hope since your mom had five years.

im not sure if everyone has the same symptons so i apologize if i am in the wrong section. I just got the phone with my mom who is a registered nurse and she has had a hystectomy(bad spelling) 20 years ago and just the other day she thought she had a boil in her vagina and she was having alot of pain, she went to emergency and they found a very large tumour inside her cervix and it extends into her bowls,they took a bioppsy and it came back cancer.She just had a colonospocy ( again bad spelling) and they removed another piece for a biopse. My mom told me that she had perineam cancer but she still is waiting for resulte for the colon biopse and she is going for a cat scan middle of sept.. So my question to everyone out there is this a similar scenario? i think mom is holding back info that is why im here...any advice is appreciated, please exscuse the grammar im alittle teary eye..

ps mom is 63 thank you all and god bless

I see that this message was from back in March. My mom was diagnosed with this horrible cancer about 6 weeks ago. She stayed in the hospital for 5 and half of those weeks after they did exploratory surgery. She just passed away last Tuesday. This is a horrible horrible cancer that apparently has no treatment to even stop it, once it gets started. My mom was 45, she was an avid tennis player and very healthy. She started complaining around the end of May that she was hurting but couldn't see a doctor until the end of July. After she was given many tests they had to do surgery to have it sent off to figure out what it was. I had never heard of this cancer till the middle of August. My mother passed away with in weeks after she was diagnosed. I think that more doctors should focus on this type of cancer and find a cure. It scares me because my grandmother has a very unusual bone cancer and now my mother has this and died from it. I think that there should be some kind of cancer group started just for this, and see if there can not be money raised for it or something started for more research!!!!!! Let me know if anyone agrees!

Hi, I was just reading the messages and wanted you to know that you're not alone. Last March 2006 it was discovered that I have this cancer too, that acts & is treated like ovarian cancer. I had a complete hysterectomy 22 years ago so I thought I didn't have to worry about any of that stuff. Anyway, I was working outside of the home and enjoyed being active, walking my shepherd/mix dog, taking care of the yard work. I too kept getting fatter and fatter and my belly kept getting bigger no matter what I did or didn't eat. Felt like I was just getting old and fat. Meanwhile we purchased a house up in the mountains as my husband had just retired. My family doctor sent me for a heart test only to learn that my heart is good. The day before the movers arrived, I went to the ER where they discovered what was wrong with me. They ran all kinds of tests on me and drained 2 ltrs of fluid out of the pluera (the lining around the lungs.) In this fluid they found the cancer marker CA-125 was at 350. In our new location I have a wonderful oncologist I have gone through 6 chemo cocktails of the platinum based chemo, but the cancer found its way around it. Now I've had 2 cocktails of Doxil and I feel great! After telling you all of this, please don't give up! Find a doctor that will give you a blood test to check your blood marker CA-125. I pray the Lord isn't ready to take me home yet.

I was originally DX 8/1/05 with OC Stage IV. Turned out to be PPC. Had 6 chemo sessions prior to 1/23/06 surgery and 4 more after surgery. In May we saw no signs of cancer so I assumed I was in remission. Had a great summer celebrating my new life, new hair, new attitude, etc., etc. Last month began having that old bloating feeling again, just around the time I had a colonoscopy (clean!). Called my Doc who I absolutely adore, and was advised to get a CA125, pronto. Numbers came in at 161 (damn!) so I'll be having a CT asap to see what's going on. Anyway, I've been really down in the dumps and pretty scared, too. I have been a fighter throughout the ordeal; everyone told me my positive attitude has been one of the the strongest they've ever seen. The problem is, I want to see/read/hear more about survivors of PPC. I never thought that would be so difficult as I didn't realize how rare a cancer this is. I'm somewhat relieved to find other sisters who share my pain and I truly hope to hear more stories of survival.

Just read all of your messages and am so thankful to have found this board. Thanks for all of your posts. It really is hard to find much information on this cancer.

My mom has PPC too... was diagnosed spring of 05. After surgery to remove her omentum she had an AWFUL few weeks in the hospital and then had to go back after she caught a bad infection following the first chemo treatment. Anyway, she made it through the six months of chemo and got back to a good standard of living... then I guess it was sometime this summer she started having trouble again... and has tried two different chemos this time... which don't seem to be helping... she keeps getting that fluid build up. About six weeks ago she had 4 litres drained... and then this week she had about the same drained.

I guess one thing I'd like some more information on... or to hear your experiences... is once this fluid build up starts... can anything stop it? Will it just get more frequent? It seems so awful... what happens next???

This is a really mean cancer... and it has shown us how strong our mom is. She battled an unrelated breast cancer back in 04 only to have this pop up on 05. Its very strange to me that she got two cancers... and the drs say they are completely unrelated.... like getting hit with lightning twice. So anyway I just feel so bad for what she's having to go through and wish there was some better treatment for this one!!! I'm with whomever suggested we need to raise awareness of PPC. It is so closely related to one type of ovarian cancer... so maybe we could team up with them...

Wow, although I'm happy to have found this message board, I am disheartened by the recurrence rate of PPC. My mom was diagnosed 3 months ago after being misdiagnosed with diverticulitis. Her CA125 was over 2000! She had a complete hysterectomy and is now on chemo that is put into her body through a general port and one that goes straight to the peritoneum. Her oncologist has given her a good prognosis, but now I'm not sure if he is being completely realistic? She is having a hard time on the chemo, and I don't think she'd be willing to go through this again if it doesn't permanently kill the cancer.
Where can we go to find true survival statistics?? Everything online seems so out of date or vague.