Primary peritoneal cancer vs. ovarian cancer

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cdigo
cdigo Member Posts: 4
edited March 2014 in Ovarian Cancer #1
I am confused and frustrated with where to find information about primary peritoneal cancer.

My mother was been diagnosed with stage 4 peritoneal cancer in Feb. of this year. When her onocologist talks to her he refers to her cancer as peritoneal cancer, while others refer to it as ovarian cancer. I read they are similar... similar cells..., but I am still confused.

I am also confused about stupid stuff too like... what color ribbon would that be... is there an organization for primary peritoneal cancer.

My mom has gone through 6 chemo treatments of a range of drugs like carbo/taxol, carbo/taxol's sister drug, carbo/taxol's cousin drug and her numbers are still in the 300.

After reading other postings, I know realize her numbers should be lower. Her doctor also mentioned that she should be in remission by now and that we have to look at different treatments and discuss how to control the cancer.

Does anyone have any advice?

Thanks,
cdigo

Comments

  • lindachris
    lindachris Member Posts: 173
    #2
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    Peritoneal chemotherapy
    I don't know if this is exactly what you're asking, but my wife had Interperitoneal chemotherapy following 8 rounds of carboplatin. The treatments were awkward and not handled that well. and I'm not sure they delivered a huge added benefit. We had a recurrence anyway. That was treated with traditiional cisplatin and other than some bumps in her numbers recently we've been holding it off.

    Chris
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
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    Hi cdigo
    I too have PPC Stage 4.I was diagnosed in Nov 09. The reason the 2 cancers are classed the same is that the peritoneum is made up of the same tissue type as the ovaries so the treatment is the same. The peritoneum is like a sack in the abdomen surrounding all of the major organs likie liver, kidneys, bowel, stomach etc. When you have PPC the lining has cancer cells scattered all over. The cells weep fluid and your abdomen can fill up with the fluid. The cells can also block the drainage points so that is why the abdomen can fill up. Plus the symptoms are almost always the same and it can be hard to diagnose. Why was your mother stage 4? Did the cancer spread? Mine had spread to the lining of my lungs and I had pleural effusion where the cells were weeping the fluid. I did have 4 chest drains but I didn't have any other surgery. I completed 6 rounds of taxol/carbo in March this year and my CA125 was down to 34 (It was 1119 at diagnosis) I have a partial result as there are still some cell remaining.

    I have just done the race for life here in the UK and wore TEAL so that is the ribbon to choose. You talk about an organisation for PPC, well I'm on facebook and there is a facebook site for it if you search it out.

    I hope this has answered some of your worries.

    Love Tina xx
  • cdigo
    cdigo Member Posts: 4
    #4
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    Tina Brown said:

    Hi cdigo
    I too have PPC Stage 4.I was diagnosed in Nov 09. The reason the 2 cancers are classed the same is that the peritoneum is made up of the same tissue type as the ovaries so the treatment is the same. The peritoneum is like a sack in the abdomen surrounding all of the major organs likie liver, kidneys, bowel, stomach etc. When you have PPC the lining has cancer cells scattered all over. The cells weep fluid and your abdomen can fill up with the fluid. The cells can also block the drainage points so that is why the abdomen can fill up. Plus the symptoms are almost always the same and it can be hard to diagnose. Why was your mother stage 4? Did the cancer spread? Mine had spread to the lining of my lungs and I had pleural effusion where the cells were weeping the fluid. I did have 4 chest drains but I didn't have any other surgery. I completed 6 rounds of taxol/carbo in March this year and my CA125 was down to 34 (It was 1119 at diagnosis) I have a partial result as there are still some cell remaining.

    I have just done the race for life here in the UK and wore TEAL so that is the ribbon to choose. You talk about an organisation for PPC, well I'm on facebook and there is a facebook site for it if you search it out.

    I hope this has answered some of your worries.

    Love Tina xx

    PPC stage 4
    Thank you, Tina.

    You explaination really helped to understand my mothers diagnosis. No body really sat down and explained it to us. My mother is at stage 4 because she has serveral tummors in her abdomen. A tumor on her lung as well as other organs. The tumors are getting smaller and we will know more later this week on the sizes. I have seen some past posting you have made and it sounds like you and her are having similar symptoms. The biggest sympton is abdomal bloating. She says it bloats up and gets hard. She is also has shortness of breath and is on oxygen. My mom is 62 years old. As for everyone, this was a shock to us. At diagnosis her numbers were about 1,800. After her 6 chemo treatments it is still at 300. She has also had reactions to the chemo drugs and had to have different drugs almost everytime.

    It sounds like my best bet is to stay with the info regarding ovarian cancer and get her a teal ribbon. I will also look at facebook for the support group.

    Does anyone else know of websites or organizations that can help or give information?

    cdigo
  • leesag
    leesag Member Posts: 621 Member
    #5
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    cdigo said:

    PPC stage 4
    Thank you, Tina.

    You explaination really helped to understand my mothers diagnosis. No body really sat down and explained it to us. My mother is at stage 4 because she has serveral tummors in her abdomen. A tumor on her lung as well as other organs. The tumors are getting smaller and we will know more later this week on the sizes. I have seen some past posting you have made and it sounds like you and her are having similar symptoms. The biggest sympton is abdomal bloating. She says it bloats up and gets hard. She is also has shortness of breath and is on oxygen. My mom is 62 years old. As for everyone, this was a shock to us. At diagnosis her numbers were about 1,800. After her 6 chemo treatments it is still at 300. She has also had reactions to the chemo drugs and had to have different drugs almost everytime.

    It sounds like my best bet is to stay with the info regarding ovarian cancer and get her a teal ribbon. I will also look at facebook for the support group.

    Does anyone else know of websites or organizations that can help or give information?

    cdigo

    This is a copy of a NOTE I added to my FB page. I hope it has some useful links for you!

    Hugs,

    Leesa


    Newly Added:
    Cancer Hope Network (will put you in touch with survivors of your specific cancer)
    http://www.cancerhopenetwork.org/

    Patient Advocate Foundation
    http://www.patientadvocate.org/

    Local resource: Claudia Mayer Cancer Resource Center (Free wig styling if you purchase your wig there, professional stylists will help you select a wig and will style it for you when it arrives, I was VERY pleased with mine!) www.hcgh.org/content/cmcrc/default.

    Headscarves:

    http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html Laurie Erickson will provide cancer patients with a free scarf!

    www.headcovers.com
    affordable scarves, I like the 36” cotton and silk ones. They also have UPF 50 hats.

    www.4women.com
    The BeauBeau scarf, more expensive, but quick and easy to put on

    http://www.tznius.com/
    A search for Jewish or religious head covering brought this up, and will also bring more scarf web sites.

    Support:

    http://csn.cancer.org/

    www.inspire.com

    http://www.cancerlinksusa.com/support/index.asp
    (also links to financial support)

    www.cancercare.org
    (also provides financial support)


    Freebies:

    www.thelydiaproject.net
    Friends can send a free tote to cancer patients. Includes a journal, pen, tissues and lotion. VERY well made

    http://www.cleaningforareason.org/cancerpatients.html
    Free housecleaning for women undergoing chemotherapy,

    Free Travel for clinical trials and treatments out of state:
    www.corpangelnetwork.org/


    Ovarian Cancer specific:

    www.ovariancancer.org

    www.ovarian.org

    TShirts with attitude:

    www.gotcancer.org

    Also search specific topics on www.zazzle.com or www.cafepress.com
  • cdigo
    cdigo Member Posts: 4
    #6
    Options
    leesag said:

    This is a copy of a NOTE I added to my FB page. I hope it has some useful links for you!

    Hugs,

    Leesa


    Newly Added:
    Cancer Hope Network (will put you in touch with survivors of your specific cancer)
    http://www.cancerhopenetwork.org/

    Patient Advocate Foundation
    http://www.patientadvocate.org/

    Local resource: Claudia Mayer Cancer Resource Center (Free wig styling if you purchase your wig there, professional stylists will help you select a wig and will style it for you when it arrives, I was VERY pleased with mine!) www.hcgh.org/content/cmcrc/default.

    Headscarves:

    http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html Laurie Erickson will provide cancer patients with a free scarf!

    www.headcovers.com
    affordable scarves, I like the 36” cotton and silk ones. They also have UPF 50 hats.

    www.4women.com
    The BeauBeau scarf, more expensive, but quick and easy to put on

    http://www.tznius.com/
    A search for Jewish or religious head covering brought this up, and will also bring more scarf web sites.

    Support:

    http://csn.cancer.org/

    www.inspire.com

    http://www.cancerlinksusa.com/support/index.asp
    (also links to financial support)

    www.cancercare.org
    (also provides financial support)


    Freebies:

    www.thelydiaproject.net
    Friends can send a free tote to cancer patients. Includes a journal, pen, tissues and lotion. VERY well made

    http://www.cleaningforareason.org/cancerpatients.html
    Free housecleaning for women undergoing chemotherapy,

    Free Travel for clinical trials and treatments out of state:
    www.corpangelnetwork.org/


    Ovarian Cancer specific:

    www.ovariancancer.org

    www.ovarian.org

    TShirts with attitude:

    www.gotcancer.org

    Also search specific topics on www.zazzle.com or www.cafepress.com

    Thank you, Leesa! I am looking forward to looking at these sites for my mom.

    cdigo
  • jennykramer08
    jennykramer08 Member Posts: 1
    #7
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    cdigo
    Hi- you adn I are in the same boat. My mother was diagnosed, initially, with ovarian cancer Stage 3C - had a debulking surgery a couple of weeks after the diagnosis (just 2 weeks ago) and a couple of days ago found out that the surgery showed that the ovaries only had slightly atypical cells- that she has Primary Peritoneal cancer...
    we were in shock, and in trying to wrap our heads around the information tried to learn all we could on ovarian cancer, now we are having to "relearn" about PPC. Information seems the same, but I understand your frustration and confusion. I just posted the same question/concern as you on the "inspire" discussion boards as well a couple of days ago.
    I too wish there was more information on it. It can't be completely the same... one contains organs, while one IS an organ, so that has got to be approached differently, I would think...
    I wish I had gone to med school :)

    My mom is starting chemo in a couple of weeks, first IV then through the IP port - I have no idea what to expect.
    Does anyone know if there is a specialist on PPC in the US???
  • cdigo
    cdigo Member Posts: 4
    #8
    Options
    jennykramer08 said:

    cdigo
    Hi- you adn I are in the same boat. My mother was diagnosed, initially, with ovarian cancer Stage 3C - had a debulking surgery a couple of weeks after the diagnosis (just 2 weeks ago) and a couple of days ago found out that the surgery showed that the ovaries only had slightly atypical cells- that she has Primary Peritoneal cancer...
    we were in shock, and in trying to wrap our heads around the information tried to learn all we could on ovarian cancer, now we are having to "relearn" about PPC. Information seems the same, but I understand your frustration and confusion. I just posted the same question/concern as you on the "inspire" discussion boards as well a couple of days ago.
    I too wish there was more information on it. It can't be completely the same... one contains organs, while one IS an organ, so that has got to be approached differently, I would think...
    I wish I had gone to med school :)

    My mom is starting chemo in a couple of weeks, first IV then through the IP port - I have no idea what to expect.
    Does anyone know if there is a specialist on PPC in the US???

    Prayers jennykramer08
    My thoughts and prayers are with you and your family. It was hard to come to terms with everything at first because it is coming at you so fast. I remember being freaked out about the port that was placed in my mom. Now, to me it is just a part of her. I don't know of any specialist on PPC. I found Tina's explaination to be the best one I have heard. The doctor didn't really explain the cancer and what could or would happen. Nobody told us that she would have a swollen abdomen, that she would have difficulty breathing. Nobody told us a lot of what we needed to know. Stay in touch because it is a comfort to read about what other women are going through. I is helping me.

    cdigo
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #9
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    cdigo said:

    Prayers jennykramer08
    My thoughts and prayers are with you and your family. It was hard to come to terms with everything at first because it is coming at you so fast. I remember being freaked out about the port that was placed in my mom. Now, to me it is just a part of her. I don't know of any specialist on PPC. I found Tina's explaination to be the best one I have heard. The doctor didn't really explain the cancer and what could or would happen. Nobody told us that she would have a swollen abdomen, that she would have difficulty breathing. Nobody told us a lot of what we needed to know. Stay in touch because it is a comfort to read about what other women are going through. I is helping me.

    cdigo

    When I was first diagnosed
    When I was first diagnosed with PPC I was so scard because I too had never heard of it and neither had many of the medical staff in the hospital where I was having a chest drain!!! In fact the young doctor who was removing my drain actually admitted he had never heard of it so I proceeded to tell him all about it !!!!!!!

    Anyway, by chance I found that my husband worked with someone who's wife had the same as me so we became real buddies. She was in remission so was able to give me loads of support and information to help me feel less frightened. She also said to me (which helped me so much when I was diagnosed)

    "The beginning bit is the most frightening because you are trying to come to terms with everything all at once"

    My friend also works as a medical secretary to a lymphoma consultant so she was an angel as she came with me to some of my appointments and was able to translate medical jargon for me. She also helped me get my chemo early as she knew the "manager" of the chemo ward and got me in quickly.

    Having any kind of cancer is scary but having one that is rare is twice as scary. BUT I look at it this way (sometimes when I am being positive!!!) Because it is so rare there is not a lot of information out there so the survival rates are very unpredictable and I (and many others) might survive this disease.

    Cancer is very scary but it is amazing how quickly you become "used to it" and it becomes part of your life. Your life doesn't stop because of it and in some cases your life is enhanced by it as you meet such wonderful people along the way.

    Hope this has helped you a little bit. Tina xx

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