primary peritoneal?

blondecat
blondecat Member Posts: 13
edited March 2014 in Ovarian Cancer #1
A group of us women are terrified for our dear friend. She was resently diagnosed and is visiting her first oncologist tomorrow. We have read that the debulking surgery is the intial tratment done prior to chemo. Tumors were not located using a PET scan. We understand that merely means that the tumors are under 2cm. Cancerous fluid was detected in her lungs and stomach. She has lost about 15 pounds in a two week span. With all of that said, we have heard that with debulking, with or without scanned tumors, followed by chemo will give her a 3-5 year survival rate. Her survival rate is under one year without surgery. If anybody can give us additional info, we would so appreciate it, Again, we are a group of close knit friends and will do anythign for her. Thanks.
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Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    wish it were that simple
    So so sorry to hear of your friend's diagnosis. Don't be terrified, be strong. Your understanding sounds clear to me, only the survival rate is not nearly as precise as you make it sound. Scroll down some, and there is a really long thread on PPC, which is handled a lot like ovarian cancers.

    Before debulking there is often cancerous fluid in lungs. My mother's oncologist said they didn't even test for it because it would have been academic at that point, which was during debulking surgery.

    Don't worry about the details, just stand by your friend. The chemo will make her lose her hair. She's gonna need her girlfriends.
  • KarynH
    KarynH Member Posts: 32
    #3
    Barbara53 said:

    wish it were that simple
    So so sorry to hear of your friend's diagnosis. Don't be terrified, be strong. Your understanding sounds clear to me, only the survival rate is not nearly as precise as you make it sound. Scroll down some, and there is a really long thread on PPC, which is handled a lot like ovarian cancers.

    Before debulking there is often cancerous fluid in lungs. My mother's oncologist said they didn't even test for it because it would have been academic at that point, which was during debulking surgery.

    Don't worry about the details, just stand by your friend. The chemo will make her lose her hair. She's gonna need her girlfriends.

    Hi blondecat,
    I’m sorry to hear of your friend’s diagnosis, but she is very lucky to have friends like your group of girls!
    Your story sounds a lot like how I was feeling a little over a year ago. It was my mom who was diagnosed with ovarian/possible peritoneal cancer. She just celebrated her 70th birthday last week.
    Like you, I started reading stats, and survival rates until I literally made myself ill from the stress.
    One day I found myself here on this message board, and learned quickly not to drive myself crazy reading stats on the internet. Instead I choose to focus on the strength and courage from the women and (caretakers) here. I have learned so much I know I would be lost without their knowledge and encouragement to one another.

    Like your friend, my mom has a great group of close knit friends that have remained close through the years and got together once a month for lunch. They were, and still are a big part of her positive attitude and helped her through some tough days. She had to bow out of the luncheons a number of times this year, but today was luncheon day and they all had a great time at Applebees!

    Mom did not have the debulking surgery as her tumors were scattered in such a way that it was not recommended. She also had fluid around her lungs, and in her abdomen, which eventually went away with chemo. She has been on chemo continuously for over a year and will most likely be on some form or another indefinitely. I can also tell you she has felt better today than she has in over a year, and continues to feel better. Her quality of life has improved dramatically since her diagnosis.

    You can click on my name or any other member’s names to learn more information on each of our journeys that brought us here.

    Things will change and never be the same. Not necessarily for the worse. This time can bring you all closer than you ever knew possible.

    -Karyn
  • blondecat
    blondecat Member Posts: 13
    #4
    KarynH said:

    Hi blondecat,
    I’m sorry to hear of your friend’s diagnosis, but she is very lucky to have friends like your group of girls!
    Your story sounds a lot like how I was feeling a little over a year ago. It was my mom who was diagnosed with ovarian/possible peritoneal cancer. She just celebrated her 70th birthday last week.
    Like you, I started reading stats, and survival rates until I literally made myself ill from the stress.
    One day I found myself here on this message board, and learned quickly not to drive myself crazy reading stats on the internet. Instead I choose to focus on the strength and courage from the women and (caretakers) here. I have learned so much I know I would be lost without their knowledge and encouragement to one another.

    Like your friend, my mom has a great group of close knit friends that have remained close through the years and got together once a month for lunch. They were, and still are a big part of her positive attitude and helped her through some tough days. She had to bow out of the luncheons a number of times this year, but today was luncheon day and they all had a great time at Applebees!

    Mom did not have the debulking surgery as her tumors were scattered in such a way that it was not recommended. She also had fluid around her lungs, and in her abdomen, which eventually went away with chemo. She has been on chemo continuously for over a year and will most likely be on some form or another indefinitely. I can also tell you she has felt better today than she has in over a year, and continues to feel better. Her quality of life has improved dramatically since her diagnosis.

    You can click on my name or any other member’s names to learn more information on each of our journeys that brought us here.

    Things will change and never be the same. Not necessarily for the worse. This time can bring you all closer than you ever knew possible.

    -Karyn

    can this be right?
    A friend of the lady I was discussing decided to get all of the medical records and send them off to her brother, a heart surgeon, for his opinion. He told her that from her records, our friend is in Stage 4 and may have only 7 weeks to live?! WHAT?? Can a doctor tell what stage without ever examining a patient? I don't know how conclusive her records could be at this point? I've read here that several ladies are stage 4 and appear to be outliving this 7 week sentence. We are waiting for Gerri to return from her new oncologist appointment. Can you ladies tell me how you feel about friends getting involved? Do you prefer to make the calls yourself to others or do you want your friends to call and inquire? Do you prefer for us to just stand by or be active in your care? none of us want to overstep our bounds, but again.... she is one of us, my god!
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    blondecat said:

    can this be right?
    A friend of the lady I was discussing decided to get all of the medical records and send them off to her brother, a heart surgeon, for his opinion. He told her that from her records, our friend is in Stage 4 and may have only 7 weeks to live?! WHAT?? Can a doctor tell what stage without ever examining a patient? I don't know how conclusive her records could be at this point? I've read here that several ladies are stage 4 and appear to be outliving this 7 week sentence. We are waiting for Gerri to return from her new oncologist appointment. Can you ladies tell me how you feel about friends getting involved? Do you prefer to make the calls yourself to others or do you want your friends to call and inquire? Do you prefer for us to just stand by or be active in your care? none of us want to overstep our bounds, but again.... she is one of us, my god!

    second hand opinions
    I hope your friend keeps her brother's second hand opinion private, because it is worthless. She should not be repeating his bad info, and I'm surprised he gave it. My nephew, resident in orthpedics, sez a doc never guesses at things outside his/her specialty. Which is why you don't ask a cardiologist about oncology, especially since there is financial rivalry between the two specialties.

    Stage 4 means there is evidence that there is cancer outside the abdominal cavity. Many, many women are diagnosed at stage 3/4, and live for several years. Much depends on how well your friend responds to chemo.

    Your friend needs to trust her doctor and medical team, and she probably doesn't like being the object of pity gossip. Set aside outcomes and get behind her. You may no know this (yet) but cancer patients often get abandoned by fearful friends. Good luck!
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #6
    Hello
    I just want to say hello. I am sorry to hear about your friend but she is lucky so have such loyal, dedicated friends. Stick close to her. If she needs some space, she'll let you know.
    I agree with Barbara, a cardiologist is not an oncologist and it's hard to believe any doctor would tell her she only has 7 wks to live.. that's ludicrous. I do believe that she is stage IV based on what you've told us (Cancerous fluid in stomach and lungs) but many women, even with advanced cancer, go into remission and can live many years.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #7
    I concur!
    Unless there is underlying heart disease that makes death imminent. I, at the age of 41yrs, was diagnosed as stage 4. Of course I was in excellent health and had no pre existing conditions. I've been fighting for 2 years now.
  • blondecat
    blondecat Member Posts: 13
    #8
    nancy591 said:

    I concur!
    Unless there is underlying heart disease that makes death imminent. I, at the age of 41yrs, was diagnosed as stage 4. Of course I was in excellent health and had no pre existing conditions. I've been fighting for 2 years now.

    phewww!
    Thanks so much for your responses. Gerri is 69 years old. Does age matter? This woman is at the gym everyday, never smoked, eats healthy food only --- we just don't get it! The quick weight loss in her is so alarming. Is that a negative sign or is it expected? Cancer cells were noted in lungs and stomach... also mentioned were a couple "spots" in espophagus. Chemo seems to become a way of life after the diagnosis? We are in the Chicago area. Anybody know anything, anywhere in this area we could direct her to? I'm sorry if I sound like I am babbling. We are terrified. All the other women in our "group" have been texting me and emailing me all day trying to get more updates, information. Thanks again.
  • srwruns
    srwruns Member Posts: 343
    #9
    I am assuming she is going
    I am assuming she is going to a gyn/onc? Since you are in a metropolitan area there is likely access to really good services. I tend to prefer being at a teaching hospital, especially one with a well developed cancer center. I recall seeing a ranking one time of the best cancer hospitals/centers in the US...you could google a search and see which highly ranked ones are near you. Or if travel or insurance isn't an issue your friend could find one that she feels would be the best match for her. Best of luck....once she establishes a good relationship with her selected gyn/onc that will probably start to answer some questions and get a treatment plan in place. I am new at this (just DX in Oct, first Chemo in Nov) and until I had a treatment plan of action (surgery and chemo) I felt quite frantic and adrift. I found that once active treatment began it was easier for me to shift way down into low gear and start moving up that mountain towards recovery. BTW, I "didn't get it either"....I was rock climbing and running 3 to 5 miles a day, backpacking and getting ready for a huge ski season when whammy....ovarian cancer.
  • nanapam
    nanapam Member Posts: 8
    #10
    srwruns said:

    I am assuming she is going
    I am assuming she is going to a gyn/onc? Since you are in a metropolitan area there is likely access to really good services. I tend to prefer being at a teaching hospital, especially one with a well developed cancer center. I recall seeing a ranking one time of the best cancer hospitals/centers in the US...you could google a search and see which highly ranked ones are near you. Or if travel or insurance isn't an issue your friend could find one that she feels would be the best match for her. Best of luck....once she establishes a good relationship with her selected gyn/onc that will probably start to answer some questions and get a treatment plan in place. I am new at this (just DX in Oct, first Chemo in Nov) and until I had a treatment plan of action (surgery and chemo) I felt quite frantic and adrift. I found that once active treatment began it was easier for me to shift way down into low gear and start moving up that mountain towards recovery. BTW, I "didn't get it either"....I was rock climbing and running 3 to 5 miles a day, backpacking and getting ready for a huge ski season when whammy....ovarian cancer.

    it is frustrating but hang in there
    I have either PPC or ovarian stage IIIc, my doc says its hard to tell but he is leaning towards PPC. I just finished my 6th and last chemo last month, and am waiting to have a CT scan to give me the "all clear". I had no visible disease after surgery, but I know there has to be microscopic cells left. Mine is low grade, so the chemo most likely did not wipe it out. I'm worried about recurrence, but for now i have to live as if i'm cured, while not taking one breath for granted. I want to be realistic and positive, and it seems to be a conflict. but for today i am well, feeling good, and today is what counts. Info is hard to find, this board is the best i have found.
  • Tasgirl
    Tasgirl Member Posts: 85
    #11
    I have PPC and was diagnosed
    I have PPC and was diagnosed October 2008. In the months previous to that I had run a marathon and 2 other fun runs and was astounded to be diagnosed. I had the surgergy followed by chemo. In the UK (I beleive) they do not do surgery only chemo so being told the statistics for survival was only 1 year without surgery does not seem right. Anyway I would not be concerned about statistics as we are all different. Being fit and healthy before surgery will definitely help your friend. All the best for your friend. Jenny
  • eward
    eward Member Posts: 210
    #12
    blondecat said:

    phewww!
    Thanks so much for your responses. Gerri is 69 years old. Does age matter? This woman is at the gym everyday, never smoked, eats healthy food only --- we just don't get it! The quick weight loss in her is so alarming. Is that a negative sign or is it expected? Cancer cells were noted in lungs and stomach... also mentioned were a couple "spots" in espophagus. Chemo seems to become a way of life after the diagnosis? We are in the Chicago area. Anybody know anything, anywhere in this area we could direct her to? I'm sorry if I sound like I am babbling. We are terrified. All the other women in our "group" have been texting me and emailing me all day trying to get more updates, information. Thanks again.

    chicago area
    My mom was diagnosed with stage 4 primary peritoneal cancer, which is treated as ovarian cancer. Her gyno-oncologist is Dr. Rotmensch, at Rush, in Chicago. He seems to be regarded as the best in this field in the area. I know also of a Dr. Schink, at Northwestern, who I hear is very good. Getting a top gynological oncologist is an absolute necessity. I cannot stress this enough. I

    I understand the terrified feeling you are talking about. My mom is 64. She did everything she could to prevent this sort of disease and it still happened to her, too, at this young age. No family history of cancer. This is a terrifying disease, with few identifying symptoms. It is treated as a "chronic condition" often, depending on the specific situation. My mom has had lots of ups and downs in the past year and a half plus, but she keeps fighting!

    My email is ejward@ameritech.net. PLEASE email me at home tonight if you need more immediate information. I will get back to you tonight or tomorrow morning, if possible. I would be happy to talk to you on the phone, too. You are not alone.

    There is hope for your friend.
    Hugs,
    Eileen
  • eward
    eward Member Posts: 210
    #13
    blondecat said:

    phewww!
    Thanks so much for your responses. Gerri is 69 years old. Does age matter? This woman is at the gym everyday, never smoked, eats healthy food only --- we just don't get it! The quick weight loss in her is so alarming. Is that a negative sign or is it expected? Cancer cells were noted in lungs and stomach... also mentioned were a couple "spots" in espophagus. Chemo seems to become a way of life after the diagnosis? We are in the Chicago area. Anybody know anything, anywhere in this area we could direct her to? I'm sorry if I sound like I am babbling. We are terrified. All the other women in our "group" have been texting me and emailing me all day trying to get more updates, information. Thanks again.

    chicago again
    I just thought of something else. If you are by any chance in the South Suburbs of Chicago, the Jennifer Falick Cancer Support Centers in Homewood and Mokena are WONDERFUL. They provide free services for anyone touched with cancer. When my mom was first diagnosed, I went there sobbing and spoke with a wonderful social worker and then had another session with her before introducing my mom to the center. My mom has attended many meetings there and has found the centers beneficial.

    Please get in contact with me. My mom also started this with cancerous fluid in her lungs at diagnosis. ejward@ameritech.net


    Eileen
  • blondecat
    blondecat Member Posts: 13
    #14
    eward said:

    chicago area
    My mom was diagnosed with stage 4 primary peritoneal cancer, which is treated as ovarian cancer. Her gyno-oncologist is Dr. Rotmensch, at Rush, in Chicago. He seems to be regarded as the best in this field in the area. I know also of a Dr. Schink, at Northwestern, who I hear is very good. Getting a top gynological oncologist is an absolute necessity. I cannot stress this enough. I

    I understand the terrified feeling you are talking about. My mom is 64. She did everything she could to prevent this sort of disease and it still happened to her, too, at this young age. No family history of cancer. This is a terrifying disease, with few identifying symptoms. It is treated as a "chronic condition" often, depending on the specific situation. My mom has had lots of ups and downs in the past year and a half plus, but she keeps fighting!

    My email is ejward@ameritech.net. PLEASE email me at home tonight if you need more immediate information. I will get back to you tonight or tomorrow morning, if possible. I would be happy to talk to you on the phone, too. You are not alone.

    There is hope for your friend.
    Hugs,
    Eileen

    stage 4
    Gerri called me late last night with her oncology report. She is in stage 4, leaning way more to PPC than ovarian. She is going to start chemo on December 6 and still keep her appt with the other oncologist (I do believe he is Rotmensch at Rush) for the 10th. She figures a round of chemo will not change the other doctor's opinion on treatment. I do not know the name of this oncologist, but he is from Lutheran General, another teaching hospital. She said her chemo drugs will be taxol and carboplatin. Are these drugs familiar to any of you? he said if the first round of chemo does not work, he will go in surgically and find it. He also told her that her tumors were like sand. Eileen, I am forwarding your information to Gerri and her daughter. Your mother's story is near identical. The doctor did tell her this was not curable. Gerri reports she is eating huge amounts of food but continues to lose weight. it seems most of the women here have a loss of appetite? This dramatic weight loss is frightening as well. She lost two pounds yesterday alone. We are frightened that the chemo will make her lose weight even quicker.
  • blondecat
    blondecat Member Posts: 13
    #15
    nanapam said:

    it is frustrating but hang in there
    I have either PPC or ovarian stage IIIc, my doc says its hard to tell but he is leaning towards PPC. I just finished my 6th and last chemo last month, and am waiting to have a CT scan to give me the "all clear". I had no visible disease after surgery, but I know there has to be microscopic cells left. Mine is low grade, so the chemo most likely did not wipe it out. I'm worried about recurrence, but for now i have to live as if i'm cured, while not taking one breath for granted. I want to be realistic and positive, and it seems to be a conflict. but for today i am well, feeling good, and today is what counts. Info is hard to find, this board is the best i have found.

    low grade
    Is low grade a term for not being able to locate actual tumors? Was yours described as "sand-like". What were the name of the drugs used for your chemo? I keep finding stories here that are just too similiar to Gerri's, How long ago were you diagnosed?
  • eward
    eward Member Posts: 210
    #16
    blondecat said:

    low grade
    Is low grade a term for not being able to locate actual tumors? Was yours described as "sand-like". What were the name of the drugs used for your chemo? I keep finding stories here that are just too similiar to Gerri's, How long ago were you diagnosed?

    sand
    Yes, my mom's cancer was described as sand sprinkled inside of her. She had 3 small tumors in the peritoneal area that were removed during surgery, along with part of her omentum and her ovaries. She had previously had a hysterectomy and did not have her uterus at time of diagnosis. She started on Taxol and carbo, had a reaction and they changed her to carbo and taxotere, which is a similar drug. Taxol and carbo are the typical drugs that they begin with from everything that I have heard.

    My mom was thin to begin with and works hard to maintain her weight. There are lots of books out there about diet and cancer. Healthy proteins might help her to maintain weight. She might ask to meet with a dietitian.

    I am glad to hear that Gerri is going to Dr. Rotmensch. She absolutely needs to see a specialist as soon as possible and he is one of the best, if not the best, in the area.

    Keep me posted on what is going on.
  • eward
    eward Member Posts: 210
    #17
    blondecat said:

    stage 4
    Gerri called me late last night with her oncology report. She is in stage 4, leaning way more to PPC than ovarian. She is going to start chemo on December 6 and still keep her appt with the other oncologist (I do believe he is Rotmensch at Rush) for the 10th. She figures a round of chemo will not change the other doctor's opinion on treatment. I do not know the name of this oncologist, but he is from Lutheran General, another teaching hospital. She said her chemo drugs will be taxol and carboplatin. Are these drugs familiar to any of you? he said if the first round of chemo does not work, he will go in surgically and find it. He also told her that her tumors were like sand. Eileen, I am forwarding your information to Gerri and her daughter. Your mother's story is near identical. The doctor did tell her this was not curable. Gerri reports she is eating huge amounts of food but continues to lose weight. it seems most of the women here have a loss of appetite? This dramatic weight loss is frightening as well. She lost two pounds yesterday alone. We are frightened that the chemo will make her lose weight even quicker.

    advice
    I don't know if this is good advice or not, but I personally would call Rotmensch's office and see if he could see her before her chemo. Doctors DO differ in their opinions of what to do first with this illness. Sometimes they want to do surgery first. My mom was told that getting the "right" or best opinion early on is better than rushing into treatment decisions.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #18
    Tasgirl said:

    I have PPC and was diagnosed
    I have PPC and was diagnosed October 2008. In the months previous to that I had run a marathon and 2 other fun runs and was astounded to be diagnosed. I had the surgergy followed by chemo. In the UK (I beleive) they do not do surgery only chemo so being told the statistics for survival was only 1 year without surgery does not seem right. Anyway I would not be concerned about statistics as we are all different. Being fit and healthy before surgery will definitely help your friend. All the best for your friend. Jenny

    Surgery PPC
    My mum had surgery for PPC, we are. In the uk , admittedly they thought it was ovarian before they went in , mmmmm, is all PPC sand like ? The surgeon said he had removed all visible trace of mums, but is that because it is sand like and not visible to the Human eye? God does that make sense
  • blondecat
    blondecat Member Posts: 13
    #19
    Mum2bellaandwilliam said:

    Surgery PPC
    My mum had surgery for PPC, we are. In the uk , admittedly they thought it was ovarian before they went in , mmmmm, is all PPC sand like ? The surgeon said he had removed all visible trace of mums, but is that because it is sand like and not visible to the Human eye? God does that make sense

    sand like means....???
    that is exactly what I am wondering. Is "sand like" a description for the "low grade" cancers that are not as easily eradicated by chemotherapeutic drugs? Our friend Gerri is the most optimistic of all of us. how do you figure? As soon as our group is alone without her we break into tears.
  • blondecat
    blondecat Member Posts: 13
    #20
    eward said:

    sand
    Yes, my mom's cancer was described as sand sprinkled inside of her. She had 3 small tumors in the peritoneal area that were removed during surgery, along with part of her omentum and her ovaries. She had previously had a hysterectomy and did not have her uterus at time of diagnosis. She started on Taxol and carbo, had a reaction and they changed her to carbo and taxotere, which is a similar drug. Taxol and carbo are the typical drugs that they begin with from everything that I have heard.

    My mom was thin to begin with and works hard to maintain her weight. There are lots of books out there about diet and cancer. Healthy proteins might help her to maintain weight. She might ask to meet with a dietitian.

    I am glad to hear that Gerri is going to Dr. Rotmensch. She absolutely needs to see a specialist as soon as possible and he is one of the best, if not the best, in the area.

    Keep me posted on what is going on.

    ?????????????????
    Gerri also had a hysterectomy some 29 years ago, leaving one ovary that can no longer be found on ultrasound. Did your mom seem to respond better to chemo after her surgery? I keep thinking how Gerri mentioned she had a "spot" on her esophagus, and a "spot" somewhere else that I cant' remember.... and sand is sand...and if they get it out and blast it with chemotherapeutic drugs, why on god's earth cant' they kill it off?
  • Barbara53
    Barbara53 Member Posts: 652
    #21
    blondecat said:

    sand like means....???
    that is exactly what I am wondering. Is "sand like" a description for the "low grade" cancers that are not as easily eradicated by chemotherapeutic drugs? Our friend Gerri is the most optimistic of all of us. how do you figure? As soon as our group is alone without her we break into tears.

    think positive
    Chemo is all about going after the small stuff, down to the microscopic level. Carbo/taxol is standard first-line, also used in lung cancers and a few other bad boys. It is not 100 percent, but most women get a very good initial response.

    Your post a few up here was pretty much demanding a cure for cancer. I vote for that, too!!!

    On age: My mom, 3c/4 feb 09, turned 80 last month, now watching tv in her bedroom. Not doing great, but still here. Think positive.

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