Please tell us your story

carolgr
carolgr Member Posts: 1
in Peritoneal Cancer #1
Hello to all of the brave women on this network. My mother was just diagnosed with PPC at stage 3c. She just had surgery (hysterectomy, and omenectomy) and will be seeing an oncologist. At first her symptoms were vague. In June 2010, She had a hx of a simple ovarian cyst seen by ultrasound,which was followed up after 4 mo. In Feb. 2011 she presented to the ER with a very strong pain in her upper right abdomen. She had gallbladder surgery 2 months later, and after that, her problems started. She had severe ascites (selling of abdomen), trouble breathing,and lower abdominal pressure. I took her to the ER and a CT scan revealed 2 pelvic masses. Ultrasound later revealed a 3rd mass, and the others appeared Ovarian. Her CA 125 measured 1250 (very high) for Ovarian Ca. We were referred to UCLA and saw an amazing GYN/Oncologist. My mother is just beginning this journey. Your stories bring us hope, although we know it is difficult to deal with. She is an amazing woman with a zest for life! I am wondering if other "daughters" were told of this being genetic, and the possible risks. If yes, what tests have been done? (I recently learned that my 1st cousin, my mom's' sister's daughter is battling PPC, and her younger sister passed away probably due to this also, but was not diagnosed in time.)Any information is welcome. Good luck to all.

Comments

  • daBeachBum
    daBeachBum Member Posts: 164
    #2
    Welcome Carol
    Hi Carol,

    Sorry you have the need to come here, but you are warmly welcomed nevertheless.

    There is a thread way down the list also titled "Please tell us your story" that has the history of a good number of us. Not sure if you saw that. There is another one "Welcome to everyone" that has some additonal stories.

    I wish only the best for your mother. I hope they find a regimen that will knock this down quickly for her. You also need to take care of you. Caregivers and family members can sometimes have it as bad or worse than patients! CSN has a caregivers forum that might be worth a look.

    All the best!

    Ray
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #3
    Welcome for support!
    Hi, my mum was diagnosed with ppc in february this year, though stage IV. Its origin seems to be in her ovaries but the doctors are unsure as she has the classical ppc pattern, only small seedings, difficult to spot on the CT scan but with trouble to breathe and swelling in her abdomen from acites.

    Well, she is a bit in to her journey and today she has done her 4th round of chemo taxol/carbo and have no trouble breathing and acites gone due to chemo doing its work.. Your mother will experience this too! Unfortunately she had stomach obstructions and had a colostomy done wich she has trouble with and pain from. But cancer is better at the moment, CA125 high (1000) from the beginning and 500 after her first treatment. Now we are waiting for the result after 4th chemo.

    Hope your mother is better off with being in stage III (better prognosis). Many of the participants in this forum lives with the ppc as a "chronic" disease rather than final and I think this is a beautiful way of thinking about it. If she can be out of treatment for a while now and then and live more years, that would make me superhappy. I will never let hope go. My mum is not very much of a fighet though.. Making it harder for me to cope with.


    I too have been asked to do the gene test but I am hesitating. It is fairly easy, they take a blood test on your mum and you but it take a while to analyze. For me, the test would be for the BRCA1 and BRCA2 gene. If positive, I would have about 50% chance to develop ovarian, (ppc) or breast cancer. So I guess it would be a good thing to know as you can get monitored and start treatment early if it happens.

    I hope that you will recieve the support very much needed by all "daughters" on this board and all brave women living with ppc and still manage to support each other and reach out a hand!

    Love from Sophie (Europe)

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