Primary Peritoneal Cancer & Treatment

Haconnor
Haconnor Member Posts: 3
in Peritoneal Cancer #1

Hello, 

My mom, age 67, was diagnosed last month with Primary Peritoneal Cancer. It started with bloating and abdominal discomfort. She was then sent for an ultrasound, blood test, and tapping (5 Liters drawn). Then her CA numbers were tested and found to be 536. She was diagnosed as Stage 3 PPC based upon this information. She had a hysterectomy probably 25 years ago, but still have her ovaries. Her ovaries are clear and not affected by this cancer. All of her organs and lymph nodes are clear as well. She only has the cancer in the Peritoneal. She did genetic testing and everything came back negative. We are completely perplexed how we are here. She started chemo last week. Her treatment plan is 3 chemo treatments spaced 3 weeks apart and then the doctors will reassess and do a new scan. She is currently with Roswell Cancer Institute which is local for her in Buffalo, NY. 

Does anyone know of any support groups that are specific to this cancer?

What questions should we be asking the doctor?

What experience with successful treatment do others have?

Everything on the internet is doom and gloom so any words of wisdom are welcomed. 

 

Thank you,

A daughter desperate for a cure!

Comments

  • loud2222
    loud2222 Member Posts: 1
    edited July 2018 #2
    to Haconnor

    hello,     7-30-2018

     my wife was diagnosed in May of this year with PPC.   We are being treated at MD Anderson in Houston, TX.

    the doctors did not tell us what stage she is in, and we had to look up all the information on this cancer on our own. ??   If you want more 

    information i suggest going to 'google' search on 'PPC cancer' and then read all you can.  My wife is going through the same chemo treatment 

    of one every 3 weeks.  Her third treatment is this friday.  

    Her CA125 bloodtest is only at a 21... so we're thankful for that.  

    The material we found on the internet concerning this cancer was not great news.  But i will tell you the best thing you can do 

    for your mom.... stay positive!  My wife is 54 and so am I.   We have a son that is 14 and going into high school this year.

    I am being as positive as i can for all three of us.   You have to be that way for your mother.  She needs you.  And don't be afraid to 

    reach out for help.  The more prayers the better.  

    For my wife, losing her hair was very tough on her.   There are lots of places that can help with wigs, and amazon has a big selection of scarves, hats, and 

    other chemo related clothing. 

     My name is Andy, and my wife is Kathy.   

    Please don't hesitate to write back.  Hang in there.... say a prayer... and know that you are NOT alone with your mom in this fight.

    my email:  loud2222@yahoo.com   my wife:  katbrown72@yahoo.com

    take care ....

    sincerely,

    Andy

     

      

  • Scout012
    Scout012 Member Posts: 5
    edited October 2018 #3
    Dec 2017 diagnosis

    I am a 38 year old Male and have been diagnosed with Peritonitel cancer last December and have been going through treatments.  Just today I was told that surgery is unlikely and will be on chemo to maintain the cancer.  I have an aggressive form and was looking to anyone out there that is in my situation.  Also, would love to know where you are going for treatment.  Hearing the question of the type of life you would like to sustain through your treatment is not something you would like to hear.

    Any advise would be apprecited.

  • abrub
    abrub Member Posts: 2,174 Member
    #4
    Scout012 said:

    Dec 2017 diagnosis

    I am a 38 year old Male and have been diagnosed with Peritonitel cancer last December and have been going through treatments.  Just today I was told that surgery is unlikely and will be on chemo to maintain the cancer.  I have an aggressive form and was looking to anyone out there that is in my situation.  Also, would love to know where you are going for treatment.  Hearing the question of the type of life you would like to sustain through your treatment is not something you would like to hear.

    Any advise would be apprecited.

    Get to a specialty cancer center

    Sloan Kettering, NYC; MD Anderson in Texas, there are others.  Find a specialty cancer center that has seen your cancer and how it can be treated.

  • Ktmc
    Ktmc Member Posts: 5
    edited October 2018 #5
    peritoneal cancer

    Waiting for this diagnosis for my 58 year old sister, BRCA2, ovaries and fallopian tubes removed a few years ago. She followed all the right procedures, and now this.  Curious if anyone had success with the HIPEK surgery?

  • Ktmc
    Ktmc Member Posts: 5
    #6
    peritoneal cancer

    CORRECTION, HIPEC SURGERY

  • Haconnor
    Haconnor Member Posts: 3
    edited March 2019 #7
    Update

    Hello All,

    I posted my original note and honestly forgot to come back to this site ... The last several months have been such a blur. Since July, my mom has endured two types of chemo every three weeks for several months, as well as the debulking surgery. We are now in the wait and see phase. Her last chemo was the end of Dec 2018. They tell us that she will get a scan every three months and the treatment plan will be based upon the results of the scan. Roswell Park Cancer Institute is where she was treated and we were very happy with her doctor. She did consult a second opinion out of state and the 2nd opinion shared the same view as Roswell which was comforting. I appreciate everyone's input and kind words. What a trying time it has been and continues to be for our family. 

    I wish you all the best in your treatment or your loved one's treatment. 

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