PRIMARY PERITONEAL CARCINOMA

JoaninRI
JoaninRI Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
HELLO EVERYONE--I AM NEW TO CSN AND I WOULD LIKE TO KNOW IF THERE IS ANYONE OUT THERE THAT HAS WHAT I HAVE? I HAD A TOTAL HYST WITH SALPINGO OORPHORECTOMY BECAUSE I HAD UTERINE CANCER. CANCER WAS ALL REMOVED AND WHEN I WENT TO HAVE MY STAPLES OUT TWO WKS. LATER MY GYN/ONCOL TOLD ME THAT THE PATHOLOGY REPORT SHOWED A NEW CANCER. PRIMARY PERITONEAL CARCINOMA--STOMACH LINING CANCER. IN SURGERY MY DR FOUND A SMALL TUMOR HIDING ON THE PELVIS AND TOOK IT OUT AND THAT WAS THE CANCER BUT WHAT HAPPENED WAS SOME OF THOSE CELLS SLID DOWN INTO THE PERITONEUM AND SPREAD ITSELF AROUND MY STOMACH LINING, THUS GIVING ME A SECOND CANCER, FIRST THE UTERINE I HAD AND NOW THIS NIGHTMARE. I HAD MY FIRST CHEMO TREATMENT OF CARBOPLATIN YESTERDAY AND WILL HAVE A TREATMENT EVERY 3 WEEKS UNTIL THE 6 CYCLES ARE COMPLETED. I WILL HAVE CAT SCANS AND LOTS OF BLOOD WORK IN THE MEANTIME. WHAT IF THE CHEMO DOESN'T WORK? I KNOW ATTITUDE IS EVERYTHING BUT I AM SCARED-TO-DEATH OF THE OUTCOME AND IF THEY DO GET ME IN A REMISSION, HOW LONG WILL IT LAST BEFORE THIS CANCER WHICH HAS A HISTORY OF RETURNING COMES BACK? THIS CANCER IS IDENTICAL TO OVARIAN CANCER IN THE WAY THAT IT LOOKS UNDER THE SCOPE, THE WAY IT SPREADS AND IS TREATED THE SAME WAY AND OF COURSE, IT ALWAYS COME BACK IN OTHER PLACES. OH GOD, I AM SO AFRAID. CAN SOMEONE HELP ME WITH ANY INFO? THANKS AND GOD BLESS YOU ALL.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • zulma
    zulma Member Posts: 8
    #3
    Hi, Joanin, I am sorry to learn you have to go through this. My mother recently finished her sixth chemio of taxol and carboplatin. In march she was diagnosed with stage 3c ovarian cancer after a total hysterectomy and removal of omentum. three weeks after her surgery, doctors discovered a 5 cm tumor by the rectum that was also attached to the bladder. Yet, after her third chemio the tumor disappeared and no trace of cancer has been found to date. Cancer as you know is very unpredictable. Don't loose hope and keep fighting. I have learned that it is important to live one day at a time and really try not to think too much about the future --its so uncertain anyways. today is important and you like my mom are alive and that is just wonderful. stay strong!
  • JoJo711
    JoJo711 Member Posts: 5 Member
    #4
    zulma said:

    Hi, Joanin, I am sorry to learn you have to go through this. My mother recently finished her sixth chemio of taxol and carboplatin. In march she was diagnosed with stage 3c ovarian cancer after a total hysterectomy and removal of omentum. three weeks after her surgery, doctors discovered a 5 cm tumor by the rectum that was also attached to the bladder. Yet, after her third chemio the tumor disappeared and no trace of cancer has been found to date. Cancer as you know is very unpredictable. Don't loose hope and keep fighting. I have learned that it is important to live one day at a time and really try not to think too much about the future --its so uncertain anyways. today is important and you like my mom are alive and that is just wonderful. stay strong!

    Hi Joanin! I was diagnosed with primary peritoneal carc. in Dec.02. Its been a heck of a year! Doc first discovered a 5cm tumor between my liver and diaphram, which they removed and then they discovered cancerous fluid in the lining of my lungs. This put me in stage 4. I started with taxol and chromoplatium(sorry about the spelling!) and had to switch to Gemzar. They have now found a tumor in my left lung and we are hoping the Gemzar chemo will take care of that. My white count keeps dropping and I have to skip treatments. I know I just have to keep a positive attitude or my world will fall apart. I'm divorced, 47, have a 15 yr.old son just starting high school and I own my own business. I have a sister that is a big help and comfort to me but she is over an hour away. I don't have any other family close. I have my friends and my son. I have to be strong, and that is hard sometimes. Some days I'm so tired I don't even eat and I know that's wrong. I just have to live for the good days and their are good days! I set a goal that I want to see my son graduate from high school, but maybe I should change that to college! my email is artaylor@bright.net
    Keep smiling!!!!!!!!!!! Jo
  • gosox
    gosox Member Posts: 2
    #5
    Hi I was diagnosed with the same cancer as you on january 31st 1990. They thought mine was ovarian also until they sent my patholgy out. I had peritoneal mesothelioma. I went through 3 major surgerys and chemo. I was rediagnosed on Nov 11th of 2002 and had more surgery and spent 1 lousy month in the Hospital. But guess what I am feeling great again. Be strong and do not let this get to you. know that you will get through this.
  • Kricket
    Kricket Member Posts: 1
    #6
    gosox said:

    Hi I was diagnosed with the same cancer as you on january 31st 1990. They thought mine was ovarian also until they sent my patholgy out. I had peritoneal mesothelioma. I went through 3 major surgerys and chemo. I was rediagnosed on Nov 11th of 2002 and had more surgery and spent 1 lousy month in the Hospital. But guess what I am feeling great again. Be strong and do not let this get to you. know that you will get through this.

    I have primary peritoneal cancer and had my surgery Jan. 2003. I would like to hear more of your experience. Thanks, Kricket
  • yang
    yang Member Posts: 1
    #7
    Kricket said:

    I have primary peritoneal cancer and had my surgery Jan. 2003. I would like to hear more of your experience. Thanks, Kricket

    My mom has primary peritoneal carcinoma for about 2 years by now, her cancer type is epithelial serous. I post her cancer history on http://mama.mrkeeper.com

    It seems this type of cancer has worse survival rate than ovarian cancer. Maybe some low maintainence dose should be used after initial remission is achieved.

    If you want to talk to me, drop me a line at xuyang11@yahoo.com

    regards,
    -yang
  • JoJo711
    JoJo711 Member Posts: 5 Member
    #8
    gosox said:

    Hi I was diagnosed with the same cancer as you on january 31st 1990. They thought mine was ovarian also until they sent my patholgy out. I had peritoneal mesothelioma. I went through 3 major surgerys and chemo. I was rediagnosed on Nov 11th of 2002 and had more surgery and spent 1 lousy month in the Hospital. But guess what I am feeling great again. Be strong and do not let this get to you. know that you will get through this.

    to Go Sox, what changed the diagnoses from ovarian to peritoneal mesothelioma? Do they say what may have caused this? I have primary paeitoneal, being treated like ovarian, with no signs of the cancer even near my ovaries (which they removed). This seems to be affecting my lungs and lymph nodes now. I'm now doing chemo (Topotekan) for the 3rd time and considered stage 4. I would be interested to hear more. Thanks! JoJo711
  • Marlenie2000
    Marlenie2000 Member Posts: 1
    #9
    yang said:

    My mom has primary peritoneal carcinoma for about 2 years by now, her cancer type is epithelial serous. I post her cancer history on http://mama.mrkeeper.com

    It seems this type of cancer has worse survival rate than ovarian cancer. Maybe some low maintainence dose should be used after initial remission is achieved.

    If you want to talk to me, drop me a line at xuyang11@yahoo.com

    regards,
    -yang

    Hi Yang
    My mother is going thru PPC. she has been dealing with it for over a year now. 8 chemo rounds, 4 surgeries, etc. She has been on TPN "Total patient nutrition" for several months now. we are having a hard time getting her to eat she still throws up a lot even though her last chemo was in September. Her abdomen is VERY bloated and the drs keep draining fluid but it just seems to come back and makes her very uncomfortable.
    Has your mother gone through any of these same things? how do you handle it all
    Thanks, Marlenie2000
  • jberslack
    jberslack Member Posts: 1
    #10
    gosox said:

    Hi I was diagnosed with the same cancer as you on january 31st 1990. They thought mine was ovarian also until they sent my patholgy out. I had peritoneal mesothelioma. I went through 3 major surgerys and chemo. I was rediagnosed on Nov 11th of 2002 and had more surgery and spent 1 lousy month in the Hospital. But guess what I am feeling great again. Be strong and do not let this get to you. know that you will get through this.

    Hi--I know you wrote this message a year ago, but I am brand new to this discussion board, and I just discovered it. Yours is a wonderful message for those of us with a relatively new diagnosis: my lung filled with fluid in April, 2004, adenocarcinoma cells were discovered, but the resulting lung surgery could not detect cancer; abdominal distress got worse and worse, and abdominal surgery on October 21, 2004, resulted in a diagnosis of primary peritoneal cancer. I have now had 4 carboplatinum/taxol treatments (I'll have my 5th next Tuesday), and my CA-125 number, which was once 3.290, is now 88. I'm hoping it will fall into the normal range soon, and when it stabilizes for two treatments, I will have one additional treatment and be declared in remission. Sounds easy--I hope it is! If you've now been at this since 1990, I am SO encouraged! 15 years is a long time to fight cancer, but oh how precious you must think those years have been. Thanks for contributing your experience. JoAnne
  • Lynnelle12
    Lynnelle12 Member Posts: 5
    #11
    JoJo711 said:

    to Go Sox, what changed the diagnoses from ovarian to peritoneal mesothelioma? Do they say what may have caused this? I have primary paeitoneal, being treated like ovarian, with no signs of the cancer even near my ovaries (which they removed). This seems to be affecting my lungs and lymph nodes now. I'm now doing chemo (Topotekan) for the 3rd time and considered stage 4. I would be interested to hear more. Thanks! JoJo711

    I think my mom was diagnosed with this tonite. She too seems to have healthy ovaries. She has no spread to her lungs, liver, bones, brain, pancreas, kidneys. They did not remove any of mom's female organs. Only the peritonium. She is considered Stage 3. she too is being treated like ovarian cancer. I've never heard of this before! JOJO what was your CA 125?

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