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cjoy55
cjoy55 Member Posts: 11
My mother was diagnosed with stage 1 ovarian cancer this July. The surgeon said there was no fluid her uteruse was soft....stage 1. The surgeon put hr surgery off for two weeks. When he went in it had spread she had fluid in her abdomen and it was on her colon and bladder. He diagnosed her atk a stage 3 c. I feel so angry at the doctor and myself for not knowing it should have been taken care of right away. Nothing I can do about it now :( I'm now looking for any advice about treatments and also how to support my mother. The surgeon told her in the hospital 5 years at the most so she isnnot open to info. I want to be the advocate for my mom. She is the strongest most amazing woman I know. Thanks for any advice or input!

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  • Robkel7
    Robkel7 Member Posts: 68
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    Have hope...
    First, I am not knowledgeable enough to know for sure if this is true, but I don't think 2 weeks makes a huge difference regarding when the surgery was done. I do think it's surprising that the surgeon staged prior to looking. I also think it was very unprofessional to give a time frame for survival. Many people live much longer than that with even stage 4...therefore, I hope you will remember that your Mom is not a statistic and that there are many ways to keep ovca at bay, and there are people who have permanent remission even at stage 3. Please try to focus on those things. I feel disappointed that this surgeon said those things. Keep our chin up and look for the best oncologist you can find in your area. There are lots of women here who know much more than me and they will be writing you. Best wishes and I will pray for your Mom. Hugs. -Robin
  • carolyn45
    carolyn45 Member Posts: 100
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    The surgeon misinformed your mother!
    First of all, welcome to the club no one wants to be in. You will get tons of wonderful advice and support here, and maybe you could get your mother to check out this site, too. Your mother's surgeon had NO right to tell her that she would live 5 years max. That is both untrue and unethical! Each person is a case unto itself. MANY people with Stage 3 C live longer than 5 years, and I plan to be one of them. Much depends on how well she responds to chemo. I was diagnosed last February when an ovarian tumor perforated my colon during a colonoscopy. I went into surgery immediately to repair the colon, and my surgeon couldn't even see it because there was so much cancer. I woke up with an ileostomy and was told my abdomen was packed full of cancer. I would have to have chemo to make surgery even possible. My CA 125 went from 1587 to 41 after 3 rounds of chemo. I had an optimal debulking surgery and (best of all) a reversal of the ileostomy. My CA 125 went to 6 after surgery and has stayed there. I was told I have EVERY chance for a long remission, and we ALL have a chance at the cancer never returning. If your mother does chemo, she almost certainly will go into remission. The norm is 6 rounds of Carboplatin and Taxol, but sometimes other drugs are used or added in. You will get plenty of information here about ways for your mother to create a "terrain" in her body that will optimize her chances of long term survival. You are probably both of you in shock, but in time this new focus in your lives will become normal, weird as that may sound now. Make SURE you find an oncologist your mother LIKES! Read here about ways to keep as strong and well as possible during chemo. Your journey is just beginning, but you have pals to reach out to on the way.
  • mopar
    mopar Member Posts: 1,972 Member
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    DON'T BE DISCOURAGED
    Sorry we have to meet this way, but I'm sure you'll continue to come here for advice and support, and maybe your Mom eventually will also.

    I agree with the ladies - no way to say for certain how long ANY of us have. They always throw out statistics, but there are too many variables, not the least of which is your Mom's strength and determination to fight this beast! I'm assuming they removed 'everything' (total hysterctomy)? And I'm hoping she has a gynecologic/oncologist? If not, you might suggest to Mom to get a second opinion. There are so many new treatments/combinations, and each needs to be tailored to the individual's circumstances.

    Keep us informed, please. In the meantime, sending lots of hugs and prayers to give you and your Mom strength. Once this shock fades a little, and once you get more information, you'll be able to be move forward and do what you need to do. Please tell your Mom there is every reason to have hope and encouragement~

    Monika
  • cjoy55
    cjoy55 Member Posts: 11
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    mopar said:

    DON'T BE DISCOURAGED
    Sorry we have to meet this way, but I'm sure you'll continue to come here for advice and support, and maybe your Mom eventually will also.

    I agree with the ladies - no way to say for certain how long ANY of us have. They always throw out statistics, but there are too many variables, not the least of which is your Mom's strength and determination to fight this beast! I'm assuming they removed 'everything' (total hysterctomy)? And I'm hoping she has a gynecologic/oncologist? If not, you might suggest to Mom to get a second opinion. There are so many new treatments/combinations, and each needs to be tailored to the individual's circumstances.

    Keep us informed, please. In the meantime, sending lots of hugs and prayers to give you and your Mom strength. Once this shock fades a little, and once you get more information, you'll be able to be move forward and do what you need to do. Please tell your Mom there is every reason to have hope and encouragement~

    Monika

    Thank you all for your
    Thank you all for your positive words. I've said the same thing to my mom that she is not a statistic and to stay positive but it's been hard. I don't like her surgeon at all he should not have said those things to her. She is now on chemotherapy weekly and is also fighting a Mrsa infection in her incisions so it's been rough and scary. I'm so looking forward and praying for remission after all this. All of you women are so strong and wonderful . This site is great it's a comfort to know there is somewhere to go for advice and to read of others experiences. Hopefully my mom will decide to come here for support also I think it will be a comfort.

    Christie
  • cjoy55
    cjoy55 Member Posts: 11
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    mopar said:

    DON'T BE DISCOURAGED
    Sorry we have to meet this way, but I'm sure you'll continue to come here for advice and support, and maybe your Mom eventually will also.

    I agree with the ladies - no way to say for certain how long ANY of us have. They always throw out statistics, but there are too many variables, not the least of which is your Mom's strength and determination to fight this beast! I'm assuming they removed 'everything' (total hysterctomy)? And I'm hoping she has a gynecologic/oncologist? If not, you might suggest to Mom to get a second opinion. There are so many new treatments/combinations, and each needs to be tailored to the individual's circumstances.

    Keep us informed, please. In the meantime, sending lots of hugs and prayers to give you and your Mom strength. Once this shock fades a little, and once you get more information, you'll be able to be move forward and do what you need to do. Please tell your Mom there is every reason to have hope and encouragement~

    Monika

    Thank you all for your
    Thank you all for your positive words. I've said the same thing to my mom that she is not a statistic and to stay positive but it's been hard. I don't like her surgeon at all he should not have said those things to her. She is now on chemotherapy weekly and is also fighting a Mrsa infection in her incisions so it's been rough and scary. I'm so looking forward and praying for remission after all this. All of you women are so strong and wonderful . This site is great it's a comfort to know there is somewhere to go for advice and to read of others experiences. Hopefully my mom will decide to come here for support also I think it will be a comfort.

    Christie
  • cjoy55
    cjoy55 Member Posts: 11
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    mopar said:

    DON'T BE DISCOURAGED
    Sorry we have to meet this way, but I'm sure you'll continue to come here for advice and support, and maybe your Mom eventually will also.

    I agree with the ladies - no way to say for certain how long ANY of us have. They always throw out statistics, but there are too many variables, not the least of which is your Mom's strength and determination to fight this beast! I'm assuming they removed 'everything' (total hysterctomy)? And I'm hoping she has a gynecologic/oncologist? If not, you might suggest to Mom to get a second opinion. There are so many new treatments/combinations, and each needs to be tailored to the individual's circumstances.

    Keep us informed, please. In the meantime, sending lots of hugs and prayers to give you and your Mom strength. Once this shock fades a little, and once you get more information, you'll be able to be move forward and do what you need to do. Please tell your Mom there is every reason to have hope and encouragement~

    Monika

    Thank you all for your
    Thank you all for your positive words. I've said the same thing to my mom that she is not a statistic and to stay positive but it's been hard. I don't like her surgeon at all he should not have said those things to her. She is now on chemotherapy weekly and is also fighting a Mrsa infection in her incisions so it's been rough and scary. I'm so looking forward and praying for remission after all this. All of you women are so strong and wonderful . This site is great it's a comfort to know there is somewhere to go for advice and to read of others experiences. Hopefully my mom will decide to come here for support also I think it will be a comfort.

    Christie
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
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    I agree with Robin
    They should not have really given her a time frame I can understand if she only had a few months to live and they tried everything but to tell her that right after finding the cancer. I am stage four when they opened me up tissue in me had already started dieing I was really messed up inside and my doctor did tell me I only had so long to live. He feels we should focus on the good. After three treatments I was in remission before my surgery my ca 125 was 2000 after three treatments it was down to 14 and now with one round of the three drugs my number is at 5.I will have a year and a half of Avastin chemo and then we will see if I need to stay on it any longer. Keep the faith your mom will hopefully do well find a good ONC and jump on it right now so she can start to live again.

    Anne
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
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    I agree with Robin
    They should not have really given her a time frame I can understand if she only had a few months to live and they tried everything but to tell her that right after finding the cancer. I am stage four when they opened me up tissue in me had already started dieing I was really messed up inside and my doctor did tell me I only had so long to live. He feels we should focus on the good. After three treatments I was in remission before my surgery my ca 125 was 2000 after three treatments it was down to 14 and now with one round of the three drugs my number is at 5.I will have a year and a half of Avastin chemo and then we will see if I need to stay on it any longer. Keep the faith your mom will hopefully do well find a good ONC and jump on it right now so she can start to live again.

    Anne

    You and Your Mom Have Every Reason to Be Hopeful
    Christie,

    My friend was diagnosed with stage 3C ovarian cancer in 2003 and she is still very much alive and enjoying life. Although she has had chemo off and on since her diagnosis, it has not stopped her from traveling throughout the U.S. and in Europe and enjoying time with her children and grandson and her many friends. She only recently retired from working full-time at the age of 64. Prior to my surgery (for ovarian cancer), my gyn-onc surgeon pre-staged me at 3C too because of the size of my tumor. My surgeon told me that at stage 3C it was possible for me to end up on my journey being cured, because of the advances today in medicine. (After surgery, I was staged at 2b.) Your mom could go into remission, just like other ladies who have shared their stories here. I will be thinking and praying for your mom, you and your family.

    Kelly
  • jbeans888
    jbeans888 Member Posts: 313
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    Cjoy
    I am sorry we have to meet this way but at least we come with good intentions. I was staged 3c in February. They had no idea I even had cancer. At first they put me under thinking I had fibroids, come to find out they are calling in a med gym/oncologist to do my surgery on the spot. Thru this process which took 9 hrs they where on the phone with my family the whole time. I still find it really insane they had to hear this via phone while I was in surgery. My mom said she heard them taking out my ovaries, then the uterus and tubes making it a complete hysterectomy. she said she was just straight out crying because it's like now I really can't have kids! And my fiancee and me where planning for kids this year. She said she looked at my fiancée and he just called his mom and broke down into tears. She came right away because she is an ER nurse. They also found lesions on my small intestines, colon, rectum, and small sand granulars on my liver. So, as mentioned I had no clue this was happenning to me because i was still under thinking it is still just fibroids. When i woke up I got "That call" I received in the recovery pretty much summed up the shittiest day I ever had. Even all the abdominal lesions my gyn/onc never gave me exact years. 5 is the standard they go by for statistics. But I have met many women who are 10yrs out with no recurrences. These are the stats we need to hear, not those 30% in five hers bulls--t. My Doctor was straight up honest she said yours stage 3c,could you die? Yes. Could you live? Yes. Everyone is different she said so lets get to it. I am now 3 month in remission and hope to stay there a while. your mom has many people here that will listen to her.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    Your mom's doctor is a jerk,
    Your mom's doctor is a jerk, but he did not cause the cancer to leap from Stage I to III by putting her surgery off for two weeks. Actually, two weeks is pretty normal. I was diagnosed (not staged....almost all doctors wait for the surgery and the path report to do that) Sept 19, 2009 and my surgery was the 29th.

    My PCP, who is an Internist and actually the one who gave me the bad news (as in, "You don't have gall stones; you have Ovarian Cancer.") said the primary tumor had probably been growing for a year or more. It's relatively slow spreading, he said.

    My official remission has lasted 19 1/2 months, give or take. Remission (often referred to here as NED) is not a definitive thing, however. I was probably in remission after my 4th round of chemo, and I may have early signs of a recurrence, even as we speak.

    What your mom's doctor told her - the 5 year "rule" - is a statistical "norm." Half of us will live less than 5 years with it, and half will live longer. I have known several women in my real life support group who lived a great deal longer. One died after 12 or 13 years, of the cumulative effects of many, many, MANY rounds of chemo. She responded well to everything they threw at her, but her remissions were never long-lived. And then there is the one who has been NED for over 12 years and never had a single recurrence.

    I don't know who gets the longevity award on this board, but you have to remember that after 5 years, a lot of women, and especially those who never have to go back into treatment, feel like it's healthier for them to move on. Cancer constantly ON the brain (not the same as Cancer IN the brain) is very, very stressful.

    I know exactly how your mom feels. I felt the same way. After about 6 months I decided that we're all going to die, and if I were going to bet on my own demise, I would put my money on OC as the ultimate cause, but I'm not going to die from it today, or this week. Probably not even this year. So it's better to live until you die, in my opinion.

    Carlene

    PS...Welcome
  • mom2greatkids
    mom2greatkids Member Posts: 528
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    Nice to meet you, although
    Nice to meet you, although I'm sorry it's because of this disease. You will find this board extremely helpful in many ways, from nutrition issues to just needing to vent. I wish you nothing but the best!
  • cfont11
    cfont11 Member Posts: 115
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    your Mom
    I was diagnosed last June with stage 3C. Fortunately, I have a wonderful gynecological oncologist and a wonderful medical oncologist and they both said women can live long and productive lives even with stage 3 and stage 4 cancers. I have just had a recurrence and even with that, the doctors are very optomistic. Don't pay attention to all the statistics, like the doctor saying your Mom will only live 5 years. Most stats you see are based on old data. Find the best medical oncologist you can. Your Mom will likely have chemo; taxol/carboplatin are the drugs used the most for the first treatments. A good oncologist will prepare you and your Mom for how the treatments will be done and how to handle the side effects. You will also get a wealth of information on this board. Best wishes and prayers to you both. Tell her not to give up, there is hope.

    Chris
  • asuprpixie
    asuprpixie Member Posts: 14 Member
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    jbeans888 said:

    Cjoy
    I am sorry we have to meet this way but at least we come with good intentions. I was staged 3c in February. They had no idea I even had cancer. At first they put me under thinking I had fibroids, come to find out they are calling in a med gym/oncologist to do my surgery on the spot. Thru this process which took 9 hrs they where on the phone with my family the whole time. I still find it really insane they had to hear this via phone while I was in surgery. My mom said she heard them taking out my ovaries, then the uterus and tubes making it a complete hysterectomy. she said she was just straight out crying because it's like now I really can't have kids! And my fiancee and me where planning for kids this year. She said she looked at my fiancée and he just called his mom and broke down into tears. She came right away because she is an ER nurse. They also found lesions on my small intestines, colon, rectum, and small sand granulars on my liver. So, as mentioned I had no clue this was happenning to me because i was still under thinking it is still just fibroids. When i woke up I got "That call" I received in the recovery pretty much summed up the shittiest day I ever had. Even all the abdominal lesions my gyn/onc never gave me exact years. 5 is the standard they go by for statistics. But I have met many women who are 10yrs out with no recurrences. These are the stats we need to hear, not those 30% in five hers bulls--t. My Doctor was straight up honest she said yours stage 3c,could you die? Yes. Could you live? Yes. Everyone is different she said so lets get to it. I am now 3 month in remission and hope to stay there a while. your mom has many people here that will listen to her.

    Jbeans888-I would love to
    Jbeans888-I would love to connect with you. We have a very similar story. I was 35 when I was first told about the ovarian cancer. I was thought to only have fibriods. I was stage IIIC, and I have been cancer free for a little over 3 years now. I was newly married, and I wanted children more than anything. I live in Florida. Where are you?