Please! Anyone w/uterine papillary serous carcinoma w/recurrence in liver? or recurrence in other o

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janeforpauline
janeforpauline Member Posts: 7
in Uterine/Endometrial Cancer #1
Pauline is one of my oldest and dearest friends. Two years ago, Pauline was diagnosed with uterine cancer and underwent a hysterectomy. She also received both radiation and chemo-therapies. She has now been diagnosed with breast cancer and also has spots on her liver. We do not know if the liver spots are due to the breast cancer, or if they are a symptom of a recurrence of the uterine cancer, and will not know until the liver biopsy. She is expecting at least a single mastectomy, and potentially a double mastectomy, along with more radiation and/or chemotherapy. Pauline says to me, "I have UTERINE PAPILLARY SEROUS CARCINOMA, and people generally don't survive a recurrence for long. I haven't had any success in finding a person who's had a recurrence of uterine cancer in the liver. I did find one person who has had a recurrence in the lymph nodes, and she is still around (going on two years). I found her in a Yahoo group, but there are probably more groups out there! Jane, could you try the American Cancer Society and see if you can find some links?"

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  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #2
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    I have UPSC 3 years now, with mets to the liver.
    I'd be happy to help Pauline all I can. I was diagnosed with UPSC in the late summer of 2008, with my 1st recurrence in my lymph nodes in fall of 2009, and have since also recurred in my liver, but I'm still here & living a good life. Please tell Pauline not to dispair; there are lots of liver-specific treatments out there that Pauline should explore: radio frequency ablation, chemoembolization, radioembolism. Please look a few posts down on this Discussion Board for my post on the radioembolism I just had for my liver tumors. I suggest that, in addition to her gynecologic oncolgist, that Pauline also ask for a radiation interventionist to be a part of her treatment team.

    & please tell Pauline this: Papillary serous cancer is a nasty beast, but she shouldn't believe the life expectancy statistics she reads online. These past 3 years I've led a rich vibrant life even though I've been in some kind of treatment all but 10 months of the 3 years. I've traveled to 9 foreign countries and taken my grandkids for a week at the beach all 3 summers, working around or postponing my treatments. Right now I'm off my game, since I had radioembolism on Friday and am still recovering from that. But for the vast majority of the past 3 years I've felt healthy, always ready to go out ahopping with a friend pr for a nice meal. I accept that this cancer will shorten my life considerably, but the journey, to date, has been SOOOOO much easier and better than I could have imagined back in 2008 when I got the diagnosis. SO much better. (((((hugs to you both)))). You can email me at lindapro@ptd.net or contact me through this Board if I can help.
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #3
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    I am a new member of the
    I am a new member of the UPSC community in my first remission, so I can't comment on the recurrence issue.

    However, I would like to add my two cents on the "awful statistics scare" issue. I have been trained in statistics at a Ph.D. level, so naturally when I got first diagnosed, I analyzed the mortality statistics non stop for a week or so. The reason was actually very rational: I needed to know the base line survival rate to gauge the risk/benefit ratio that makes sense for me. For instance, if the 5 year survival rate is 90%, you take a very conservative approach to the disease management. If it is 5%, then all the options that are too risky for other women are all worthwhile, a fair game for me with a very favorable risk/benefit ratio. I felt that this would be a very useful guideline for my future disease management strategy.

    In the process, I noticed some interesting aspects about the survival statistics overall, and especially for UPSC.

    (1) the stats are necessarily retrospective. As such, the scary numbers you see on Internet are based on women diagnosed at least 10-15 years ago. The numbers will apply to you only if you assume that there has been NO scientific progress during that time and there will be none next umpteen years either. I don't believe this.

    (2) the numbers are based on the overall population of the patients. I firmly believe that patient's attitudes, mental capacity, socio economic status, geographical location all matter. Your friend has you who are already advocating for her, gathering information and knowledge. She is already ahead of the curve.

    (3) Especially for UPSC, the numbers are really scary, not necessarily due to the nature of the disease, but because of the way the statistics were compiled and the nomenclature and disease classification. UPSC was separated from the more common type of uterine cancer only a bit over 20 years ago. UPSC, though it has the name "uterine", behaves very differently from the common uterine cancers, and requires a treatment that is commonly used for ovarian cancer. It's been only lately that this has been acknowledged. In fact, if I remember correctly, it's been less than 10 years since the protocol for a proper treatment for UPSC was established. All this means, scary survival statistics for UPSC is, in my humble opinion, in part very much due to the fact that patients, till lately, did not get a proper treatment. I bet dollars to donuts that if we see UPSC survival statistics 10 years down the road, the numbers will be dramatically better - and your friend is part of this new curve.

    Furthermore, the currently available stats say, the average UPSC patient is a 75 year old black female. I am really curious where this came from. Looking at the whole history behind UPSC as a separate disease, I consider any stats based on early data and samples with a giant question mark in terms of their validity and applicability for us now.

    So, moral of the story, don't despair when you look at the numbers. They don't apply to us here and now. I am not a big fan of empty words of encouragement and baseless optimism. Optimism has to have a rational basis. I am upbeat - rationally, I think. I am UPSC stage 4B - this is about as advanced as it gets. I am optimistic about my odds.
  • sunflash
    sunflash Member Posts: 197 Member
    #4
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    evertheoptimist said:

    I am a new member of the
    I am a new member of the UPSC community in my first remission, so I can't comment on the recurrence issue.

    However, I would like to add my two cents on the "awful statistics scare" issue. I have been trained in statistics at a Ph.D. level, so naturally when I got first diagnosed, I analyzed the mortality statistics non stop for a week or so. The reason was actually very rational: I needed to know the base line survival rate to gauge the risk/benefit ratio that makes sense for me. For instance, if the 5 year survival rate is 90%, you take a very conservative approach to the disease management. If it is 5%, then all the options that are too risky for other women are all worthwhile, a fair game for me with a very favorable risk/benefit ratio. I felt that this would be a very useful guideline for my future disease management strategy.

    In the process, I noticed some interesting aspects about the survival statistics overall, and especially for UPSC.

    (1) the stats are necessarily retrospective. As such, the scary numbers you see on Internet are based on women diagnosed at least 10-15 years ago. The numbers will apply to you only if you assume that there has been NO scientific progress during that time and there will be none next umpteen years either. I don't believe this.

    (2) the numbers are based on the overall population of the patients. I firmly believe that patient's attitudes, mental capacity, socio economic status, geographical location all matter. Your friend has you who are already advocating for her, gathering information and knowledge. She is already ahead of the curve.

    (3) Especially for UPSC, the numbers are really scary, not necessarily due to the nature of the disease, but because of the way the statistics were compiled and the nomenclature and disease classification. UPSC was separated from the more common type of uterine cancer only a bit over 20 years ago. UPSC, though it has the name "uterine", behaves very differently from the common uterine cancers, and requires a treatment that is commonly used for ovarian cancer. It's been only lately that this has been acknowledged. In fact, if I remember correctly, it's been less than 10 years since the protocol for a proper treatment for UPSC was established. All this means, scary survival statistics for UPSC is, in my humble opinion, in part very much due to the fact that patients, till lately, did not get a proper treatment. I bet dollars to donuts that if we see UPSC survival statistics 10 years down the road, the numbers will be dramatically better - and your friend is part of this new curve.

    Furthermore, the currently available stats say, the average UPSC patient is a 75 year old black female. I am really curious where this came from. Looking at the whole history behind UPSC as a separate disease, I consider any stats based on early data and samples with a giant question mark in terms of their validity and applicability for us now.

    So, moral of the story, don't despair when you look at the numbers. They don't apply to us here and now. I am not a big fan of empty words of encouragement and baseless optimism. Optimism has to have a rational basis. I am upbeat - rationally, I think. I am UPSC stage 4B - this is about as advanced as it gets. I am optimistic about my odds.

    Pauline is lucky to have you
    Pauline is lucky to have you searching the internet/advocating for her. I've had tremendous support from my family and friends and don't know where I'd be without them. As a matter of fact, my very own dear sister who is a retired teacher, became a sub solely for my sake....to take my class during my treatments when I am unable to be there. She has been volunteering in my 5th grade classroom to get to know the students and to understand my procedures and how I handle my class. What a blessing she's been! I'll be forever grateful to her and to all the others who have been supportive. And just as important, I'll know how to reach out to others when this is all behind me.
    Linda and Optimist..........thank you so much for sharing your upbeat attitudes and research with the rest of us. Taking the time to research and to post encouraging information when everything you read on the internet seems so bleak is very selfless and giving of you.
    I appreciate you more than you'll ever know!
  • janeforpauline
    janeforpauline Member Posts: 7
    #5
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    sunflash said:

    Pauline is lucky to have you
    Pauline is lucky to have you searching the internet/advocating for her. I've had tremendous support from my family and friends and don't know where I'd be without them. As a matter of fact, my very own dear sister who is a retired teacher, became a sub solely for my sake....to take my class during my treatments when I am unable to be there. She has been volunteering in my 5th grade classroom to get to know the students and to understand my procedures and how I handle my class. What a blessing she's been! I'll be forever grateful to her and to all the others who have been supportive. And just as important, I'll know how to reach out to others when this is all behind me.
    Linda and Optimist..........thank you so much for sharing your upbeat attitudes and research with the rest of us. Taking the time to research and to post encouraging information when everything you read on the internet seems so bleak is very selfless and giving of you.
    I appreciate you more than you'll ever know!

    Thank you all!
    Im encouraged to find out that the statistics for UPSC are redundant. I'm also relieved to hear that a recurrence in the liver post UPSC treatment isn't an automatic 2-yr death sentence. I'm still waiting for the liver biopsy so I still have no idea whether the liver tumors are from the breast cancer or from the UPCS-- and I'm not sure whether this matters but I have 2 types of breast cancers in my L breast (ductal and lobular) n the largest one is 7cm. Nonetheless, I'm curiously calm despite the news and am enjoying the fact that I finly feel like myself again. Lost all the chemo weight ( over 28lbs), am no longer on antidepressants, feel fine and very much alive. We'll seewhat the doctors say ( I'm getting two second opinions since my oncologist would have not discovered the breast cancer nor the spots onthe liver had I not requested a cat-scan). She still missed the liver spots and it took a consultation with the chief of surgery before that was discOvered. All in all, it's been over a month just to get here-- which is in limbo. Well, enough complaining. To everyone out there-- don't give up and be your own advocate Insist on procedures you feel is necessary and remember; your doctors are doing the best they know but that usually means following a given protocol. Everyone is different and no two tumors are exactly alike. So take matters into your own hands speak up if you feel they aren't takingevery variable into consideration. My UPSC would not have been discovered had I went along with my doctors and agreed it was menopause. Instead, I insisted they perform a DnC to biopsy my uterine wall.
    Good luck and God bless to all of you out there. Be strong and may you live long.
    Love,
    Pauline
  • Songflower
    Songflower Member Posts: 608
    #6
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    janeforpauline said:

    Thank you all!
    Im encouraged to find out that the statistics for UPSC are redundant. I'm also relieved to hear that a recurrence in the liver post UPSC treatment isn't an automatic 2-yr death sentence. I'm still waiting for the liver biopsy so I still have no idea whether the liver tumors are from the breast cancer or from the UPCS-- and I'm not sure whether this matters but I have 2 types of breast cancers in my L breast (ductal and lobular) n the largest one is 7cm. Nonetheless, I'm curiously calm despite the news and am enjoying the fact that I finly feel like myself again. Lost all the chemo weight ( over 28lbs), am no longer on antidepressants, feel fine and very much alive. We'll seewhat the doctors say ( I'm getting two second opinions since my oncologist would have not discovered the breast cancer nor the spots onthe liver had I not requested a cat-scan). She still missed the liver spots and it took a consultation with the chief of surgery before that was discOvered. All in all, it's been over a month just to get here-- which is in limbo. Well, enough complaining. To everyone out there-- don't give up and be your own advocate Insist on procedures you feel is necessary and remember; your doctors are doing the best they know but that usually means following a given protocol. Everyone is different and no two tumors are exactly alike. So take matters into your own hands speak up if you feel they aren't takingevery variable into consideration. My UPSC would not have been discovered had I went along with my doctors and agreed it was menopause. Instead, I insisted they perform a DnC to biopsy my uterine wall.
    Good luck and God bless to all of you out there. Be strong and may you live long.
    Love,
    Pauline

    Hi I'm Diane
    Hi, I was diagnosed in 2008 and recurred about 7 months after treatment. Since then I have recurred with peritoneal carcinmatosis and had hipac. I have a tumor in my liver and am on chemo. I had breast cancer 12 years ago and I am sorry your friend is dealing with this together. She will get chemo which should fight both cancers. I don't know what they plan to do with my liver tumor but my CA125 is going down so they will scan and then decide I guess. As you can tell I am at the no worry stage.

    I am going to the mountains next week. I have been taking chemo weekly for three weeks and then off one week. It's an easy chemo for me (gemzar) but makes me sleepy. I believe your friend has more time than you imagine. She is lucky to have you with her. Your friendship is golden.

    Love, Diane
  • janeforpauline
    janeforpauline Member Posts: 7
    #7
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    Songflower said:

    Hi I'm Diane
    Hi, I was diagnosed in 2008 and recurred about 7 months after treatment. Since then I have recurred with peritoneal carcinmatosis and had hipac. I have a tumor in my liver and am on chemo. I had breast cancer 12 years ago and I am sorry your friend is dealing with this together. She will get chemo which should fight both cancers. I don't know what they plan to do with my liver tumor but my CA125 is going down so they will scan and then decide I guess. As you can tell I am at the no worry stage.

    I am going to the mountains next week. I have been taking chemo weekly for three weeks and then off one week. It's an easy chemo for me (gemzar) but makes me sleepy. I believe your friend has more time than you imagine. She is lucky to have you with her. Your friendship is golden.

    Love, Diane

    Note from Jane
    Diane, It was so kind of you to post here. Pauline is following this site, and her message is above. I appreciate the caring thoughts of others, and I know Pauline does also. Things may be looking (a little) up, though, as a CT scan proved that the liver spots have disappeared. Pauline is off for 2nd and 3rd opinions. However, she has three lumps in one breast and two kinds of cancer there. The third lump must, therefore, be of one of the two kinds, yet it hurts, whereas the others don't. Can you shed any light on this? I'm going to go explore the Survivors of Breast Cancer area of this site. Thanks for your generosity of spirit and time. Have a wonderful trip to the mountains! Jane
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #8
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    Songflower said:

    Hi I'm Diane
    Hi, I was diagnosed in 2008 and recurred about 7 months after treatment. Since then I have recurred with peritoneal carcinmatosis and had hipac. I have a tumor in my liver and am on chemo. I had breast cancer 12 years ago and I am sorry your friend is dealing with this together. She will get chemo which should fight both cancers. I don't know what they plan to do with my liver tumor but my CA125 is going down so they will scan and then decide I guess. As you can tell I am at the no worry stage.

    I am going to the mountains next week. I have been taking chemo weekly for three weeks and then off one week. It's an easy chemo for me (gemzar) but makes me sleepy. I believe your friend has more time than you imagine. She is lucky to have you with her. Your friendship is golden.

    Love, Diane

    Diane enjoy your week in the mountains
    Glad to hear you are going to get away for a while. Also glad to hear you are tolerating the Gemzar so well. Happy to hear you are at the "no worry stage". Worry does not really help or change anything, but it is hard not to do. Enjoy your week off chemo and make the most of the week in the mountains. In peace and caring.
  • Songflower
    Songflower Member Posts: 608
    #9
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    Ro10 said:

    Diane enjoy your week in the mountains
    Glad to hear you are going to get away for a while. Also glad to hear you are tolerating the Gemzar so well. Happy to hear you are at the "no worry stage". Worry does not really help or change anything, but it is hard not to do. Enjoy your week off chemo and make the most of the week in the mountains. In peace and caring.

    Your Friend Pauline
    BreastCancerthe.org is the best site for information. Much better than I could give you. It would be wonderful if we had a site like that for us. Your friend may have found it already.

    Best wishes to you.

    Love,
    Diane

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