Primary Periteneal Carconoma

Hi,

I have been reading the board on primary periteal carconoma. I was diagnosed with this cancer in 4/06. I was loaded with fluid and I found no help from all drs. I went to. I had an ultrasound of my gall bladder and they saw all the tumors in there. I had them attached to everything and then they were floating too. I talked to the radiologist who found this and he said the tumors take from your body and blood source and the tumors do not have a skin to hold all this fluid in so it weeps and makes you look like your pregant. I had a lot of fluid removed before my debulking surgery. You need a cancer center who does this type of surgery. Not anyone can do this and do a good job. I had my omentum removed and anything else I could live without. God was taking very good care of me because they did not have to resection my intestines. A month after surgery I was given chemo in a regular port with sysplat and also IP chemo. That is belly chemo. They dump the chemo in and then have you go from side to side every fifteen minutes for 2 hours every time you have chemo. I did this for six sessions. At the end I was not in too good of shape, but I eventually got my strenth back. I started out with a CA 125 of about a 1000 and now it is down to a minus 2. I am doing very well. I started in a stage 3 with a 30% chance of survival. I am now in a 50% chance it will not come back. I am at 1 yr. and 3 mo. When I reach two years my percentages increase. My Dr. told me 2 people in a million get this cancer. They have nothing to treat it with, but because it is so much like ovarian they can treat it that way and hope for the best. Belly chemo is not very good either because there are so many people who can just not do it. I had people all over the world praying for me. I believe, good support, prayers, a positive attitude , and God to help you get through this.           Harmless

Hi, I believe God sent you my way today. My mother goes into the office this thursday to discuss her operation. She is stage four, has had stomach pains since last May but just diagnosed about a month ago with cancer. They kept telling her she has ovarian but she has no ovaries.I know under a scope this shows as ovarian.  Then they say its breast cancer cause she has breast cancer cells too. So but there are no masses in her breast. And her pet scan shows cancer in her lymph nodes, liver, clusters in her abdomen. So the only other possible thing they will more than likely treat it as is this. Ive just read so much horrible things about this cancer i cant find it in myself to find a positive attitude but when im around her. The whole operation scares the living crap out of me so does the chemo.. Im so glad you are doing better and have this wonderful attitude. You have given me some hope. Thank you. I will carry this with me.... Trisha

Hi Trish,

I will keep praying for you and your family. It is not just the person who has it but it affects the whole family. I had a hysterectomy 11 years ago and it was done vaginally. They said they took everything out but when this came up they told me it was caused from a little piece of overy left in there. My recomondation would be if there is nothing wrong with them leave them in and deal with them if there is a problem. When they did my debulking surgery they said they would find a piece of ovary in there and tehy did. It was full of cysts and just plain nasty. I guess we as women should be picky about who does what to us. Also my gyny did not do all of peoples checkups and stuff herself. She had assistants and mid wives. You never had the same person ever and when I told them my symptoms they told me to go to the gas Dr. Did not even take a note about it. I am glad I have given you some hope. I do believe there is hope for all of us. A positive attitude in all of this helps to get you a long way. If I can write to anyone else to help them feel better about this kind of situation I would be glad to anwer. Blessings, Harmless

Can I ask you personally how did the surgery go. It sounds pretty invasive. I read there about five days in ICU afterwards and put on a feeding tube. Im really scared of what they will find when she goes under. How did they diagnose you? Did it take a long time.. Shes been going through this since May was told back in November from her hometown dr. she had cancer but wasnt sure where. When sent to a very well known MD Anderson In Jan.  they a month later still arent sure. Here we are in Feb. . Very frustrating! I hope we can keep in touch.

Hi... I am sorry you are going through this, but nice to hear you are doing pretty okay.  I believe this is what my Dad is going to be diagnosed with, it is their educated guess right now and we were told it is very rare.  We are at a top hospital, luckily live near one, Hillman Cancer Center in Pittsburgh.  I am just so hoping we can find some hope as I am truly devastated by this.  We just lost my Mom in October to colon cancer and now just a few months later this with my Dad... my Mom was just 63 and Dad 65... I can't believe this is happening again so soon.  I myself am a childhood leukemia survivor and can't beleive our family has had all this going on!  I will keep you in my prayers... my Dad's biopsy is Tuesday and then we go from there...

 

On 2/4/2008 twithers wrote:

Can I ask you personally how did the surgery go. It sounds pretty invasive. I read there about five days in ICU afterwards and put on a feeding tube. Im really scared of what they will find when she goes under. How did they diagnose you? Did it take a long time.. Shes been going through this since May was told back in November from her hometown dr. she had cancer but wasnt sure where. When sent to a very well known MD Anderson In Jan.  they a month later still arent sure. Here we are in Feb. . Very frustrating! I hope we can keep in touch.

Hi, I pray for the best at your dads biopsy. What are they doing a biopsy on? Im so sorry your family has been hit so many times by this desease. My mom, well they started her on her chemo. She thought she was going in to discuss her surgery but instead did six hours of chemo. She comes back in a week for her second set. They will do one more then maybe the surgery. She has a lymph node to close to her heart that they are trying to shrink and hopefully the spot in her spine. She got pretty sick and in pain, so i can just imagine what this next round will do to her. They are also going ahead and saying this is what she has. Is your dad haveing this debulking surgery? My  mom is also 62, just seems so young still. Well I hope you keep in touch. And you will be in my prayers. God Bless.

Hi,

Hi.  My mother was diagnosed with Peritoneal Cancer in July 2006, at 67.  She had surgery( luckily it was contained in the abdomen) and then 6 rounds of chemo via a belly port and was declared "in remission" in December of 2006.It was very frustrating as it was nearly impossible for me to find any information regarding this cancer, my own doctor had never even heard of it.Initially I got most of my info from a website started by Francine Milano, another ppc patient.  Just recently mom was tested and two hotspots were located, one in the abdomen and a smaller one in the chest area, so it's back.  Much more quickly than any of us had anticipated.  After a CT her physician told her it was small and they wouldn't need to begin chemo right away.  I don't know why they would wait...maybe due to the strain on the body.  I've spent so much time on the computer trying to learn about this cancer but I think I'm tired of medical jargon,it's too depressing, and just want to reach out to real people with real stories. She has told me that she learned from another patient that they rarely perform a second surgery with this cancer.  Anyone out there with recurrence info on that?? I'm scared to death but trying to remain positive and brave for my mom...as that is the way that she has approached it.  I appreciate the stories that are out there..I want to know as much as I can.  My heart goes out to all.

Hello,

 

please let me know how ths bout with the second ones goe. My mom too was diagnosed with this terrible disease about 1 1/2 years agol. We were informed yesterday that despite her chemo treatments the cancer has progressed and she now is at %20 to 540 percent with chemo. I am told that there is not a lot we can do at this point but hope for the best. A miracle if you will.I have looked and talked with others about herbal treatments and alternatives but it all seems very grim. If anyone has any more info on this please let me know.

Kssfrmangl 

 

 

On 3/15/2008 momof3boys wrote:

Hi.  My mother was diagnosed with Peritoneal Cancer in July 2006, at 67.  She had surgery( luckily it was contained in the abdomen) and then 6 rounds of chemo via a belly port and was declared "in remission" in December of 2006.It was very frustrating as it was nearly impossible for me to find any information regarding this cancer, my own doctor had never even heard of it.Initially I got most of my info from a website started by Francine Milano, another ppc patient.  Just recently mom was tested and two hotspots were located, one in the abdomen and a smaller one in the chest area, so it's back.  Much more quickly than any of us had anticipated.  After a CT her physician told her it was small and they wouldn't need to begin chemo right away.  I don't know why they would wait...maybe due to the strain on the body.  I've spent so much time on the computer trying to learn about this cancer but I think I'm tired of medical jargon,it's too depressing, and just want to reach out to real people with real stories. She has told me that she learned from another patient that they rarely perform a second surgery with this cancer.  Anyone out there with recurrence info on that?? I'm scared to death but trying to remain positive and brave for my mom...as that is the way that she has approached it.  I appreciate the stories that are out there..I want to know as much as I can.  My heart goes out to all.

 

Sorry after re-reading my response it didn't really answer any of your questions. I apologize. I just get very emotional and angry towards this cancer.

It is very rare. I don't know anyone else personally who has PPC. Most people have never even heard about it.

So my opinion is go get a second opinion. Where do you live? Don't wait for the tumors to get bigger. Is that what those doctors would tell their own mothers. Lets just sit and wait for the tumors to get bigger and make you more ill. Doesn't that seem silly??

 Diet and Nutrition is vital with any kind of cancer. Try and see a nutritionist or go to the library and get out some books on diet and cancer. Start eating totally organic. Sugar is the worst as cancer feeds off sugar and acid. NO acidic foods. Vinigar and grapefruits are out. Just google diet and cancer. 

Good Luck. I totally understand your situation. It is stressful and you want to do what you can but feel hopeless.

Christine 

 

 

Hello, My mom has PPC, she had surgery on March 7th. They removed a tumor from her colon and one from her intestines. She is still not fully recovered. They have put off her chemo (supposed to start Friday) for another week or so. She said she is a satge 3 or 4 (relating to ovarian cancer). We are all having a really hard time with this, mainly because we don't know what to expect. She has went and made her own funeral arrangements and she's only had cancer for a couple of months. It worries us that she will give up. I am ecstatic that I found this message board. It's a lil more comforting to know more of what to expect. Does anyone have any advice I can share with my mom. She is only 49. My sister and are worried about my dad too. He doesnt talk about it. How do we handle both of them?