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Victim of Tamoxifen

2

Comments

  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408

    See if you can get Da Vinci surgery for hysterectomy
    A hysterectomy is MAJOR surgery, I won't kid you about that. But if you can get da Vinci robotic surgery for your hysterectomy the scarring is minimal and the recovery time is faster and less painful. Not everyone is a candidate, but it's worth shooting for if you can. Best wishes on this difficult decision.

    I may be visiting you ladies on the breast cancer board. I have a recurrance of my uterine cancer and part of it is a malignant swollen lymph node in my left armpit. I keep wondering where my cancer is trying to get to from there, and the breast is my uneducated guess. Hope not.

    See if you can get Da Vinci surgery for hysterectomy
    I had the Da Vinci surgery...much easier than the traditional if you can get it.

    Linda sending you positive vibes that Lymph Node settles down...Have you been told it is malignant???

    Laurie
  • kkstef
    kkstef Member Posts: 688

    tamoxifen
    Your mother is not at risk of cancer of the cervix from tamoxifen. she is at risk for uterine cancer which cannot be diagnosed with a pap smear. She needs yearly ultrasounds and uterine biopsies. Most often they tell you to wait until you have some irregular bleeding. Serous cancer is very agressive and most women don't realize they can get serous cancer. Endometriod cancer can be cured with hysterectomy if it has not spread to the lymph nodes.

    Diane

    Although this is considered the "good" kind of endometrial cancer, it depends on the stage and the Grade and is not so easily cured if it is considered "advanced". I have Stage 3A, Grade11/111 which had invaded clear through the uterine wall and invaded the vascular spaces in the uterus.....so, certainly can be a sobering experience.

    I pray that we find better methods of early detection for all types of uterine cancer in order to save lives and improve quality of life for all. It impacts so many women and their families!!

    Karen
  • california_artist
    california_artist Member Posts: 816
    kkstef said:

    Although this is considered the "good" kind of endometrial cancer, it depends on the stage and the Grade and is not so easily cured if it is considered "advanced". I have Stage 3A, Grade11/111 which had invaded clear through the uterine wall and invaded the vascular spaces in the uterus.....so, certainly can be a sobering experience.

    I pray that we find better methods of early detection for all types of uterine cancer in order to save lives and improve quality of life for all. It impacts so many women and their families!!

    Karen

    Karen
    Well, that just breaks my heart and makes me want to read faster.

    You know how I'm all about green tea and ginger, sorta like a broken repeat play record, well last night I was reading Anti Cancer A New Way of Life and on page, wait I have to go get the book, I can't locate the exact page, but the message was that the most reliable overall cancer fighters were green tea and resveratrol from grapes and red wine, no mention of ginger, but that's new and not on most scopes right now.

    Love you and am grateful for your kind encouraging words. Thanks!

    I do wish everyone would read the book and take away what works for them. I have the worst memory as to reasons for things, although I do retain, must do A,B,C etc......

    Love you oooooodles,

    Claudia


    Through the uterine wall and invasion of the vascular spaces, CRAP!!! How are things going? What are those people in the with coats saying? Are you doing any other things??

    Get out your medical records and look up your C-RP and Albumin stats. Please email me the results, I'm trying something. [email protected]

    Ah, sorry, in the bossy Queen mode. C-RP is an inflammation marker and if you haven't had it done yet, you could ask you doctor it costs less than $20 if your insurance won't cover it.
    Inflammation supports cancer's growth, so knowing your number and then doing whatever you can to lower it could make a huge difference. Mine was 9.8 which freaked me out. I asked my doctor for an antibiotic to get rid of an infection if that was a contributing factor. That brought it down to 6.8 which was a lot better but since zero is what we're aiming for still not great. the more I read the more I'm convinced inflammation is the thing to control, it has to do with how cancer takes over. It ofter begins with inflammation or a wound and then takes over that process to continue on out of control.

    So, your job is to do these things:

    Think often about flippin on the p53 switch, and don't have kind thoughts towards your cancer cells as Patricia has decided to do.
    Get your C-RP level and find you Albumin level
    Drink green tea and take standardized capsules of EGCG or green tea
    Drink grape juice and take standardized capsules of resveratrol
    Crush, mince and let stand for 10 minutes garlic, then add it to what you're eating without cooking. This helps stabilize your insulin. Insulin feeds cancer's growth and we don't want that.

    there bossy bossy bossy. I'm not a doctor and I don't mean to act like one but now you've gone and worried me.

    Stop being sick!
  • pgrace35
    pgrace35 Member Posts: 122

    Tamoxifen
    I was under the care of a gynecologist. My oncologist and gynecologist would ask if I had any bleeding as I was menopausal after chemo at age 49. No on suggested every four monthly ultrasounds. I had breast cancer Dec of 1999 and am in research study B27. Started Tamoxifen in 1999 as part of the study. I had a D and C in 2004 and had negative findings with two polyps negative. Then I started bleeding during exercise in Feb of 2009 and have been diagnosed with endometriod and serous. I don't think tamoxifen women realize they can get serous which is very agressive. Endometriod is treated curatively with simple hysterectomy for most women. I don't think serous can be diagnosed with ultrasound. If I had it to do over again I would have had complete hysterectomy. They are working on a protein blood test to diagnose serous. I think you are at less risk if you are still menstruating. Remember, I developed this almost five years after I completed tamoxifen. It tends to occur in a thin uterus. Did the D and C trigger it in 2004? I wonder sometimes if there was a bit of of serous in the polyp they missed. I felt safe but wasn't. I did have several negative uterine biopsies; all negative. I disagree with the gynecologist and oncologists; if you are giving women a drug that can cause another cancer and there is a simple way to prevent this with hysterectomy then women should be offered this. I also think our statistics are poor regarding the number of women who get uterine cancer from tamoxifen. I believe it is higher; it is higher in other countries. We need better stats.
    If you want me to join in your discussion group I will. Tell me where and how to go. I don't think enough breast cancer women realize the different types of uterine cancer and what they are really at risk for. Just think, one hysterectomy, no more worries. I know this is hard if you want to have more children. I never did so would have been happy to have hysterectomy. I also don't think the insurance companies want to pay for it. Oncologists don't want to prolong the treatment. I think the cards should be laid on the table and we make our own choices.

    Diane

    First off I want to say I'm sorry for all that you have been through. Getting through breast cancer is enough. I have breast cance, just finished chemo and will be doing radiation the first of the year, I have made my decision not to take tamoxifen for the numerous side effects I have heard from other women's posts. I have also decided, not recommended by my oncologist to have a full hysterectomy, she just recommends my ovaries only, but wants me to take tamoxifen. Never did she mention the risk of cancer in the uterus with this drug, I asked her. She said the risk was low, regardless of that it should be addressed as you mentioned, along with all the other horrible side effects this drug causes. Regardless if the risk is low, people get it from this drug just like you. We should be given the option to decide for ourselves once given the info. I made this decision because I was afriad that my uterus was just another cancer factory somehow, not realizing it could be from a drug they insist on me taking after my treatment. I have decided to take a homepathic route for blocking my estrogen after my surgery. Thanks so much for you info.
  • daisy366
    daisy366 Member Posts: 1,458
    pgrace35 said:

    First off I want to say I'm sorry for all that you have been through. Getting through breast cancer is enough. I have breast cance, just finished chemo and will be doing radiation the first of the year, I have made my decision not to take tamoxifen for the numerous side effects I have heard from other women's posts. I have also decided, not recommended by my oncologist to have a full hysterectomy, she just recommends my ovaries only, but wants me to take tamoxifen. Never did she mention the risk of cancer in the uterus with this drug, I asked her. She said the risk was low, regardless of that it should be addressed as you mentioned, along with all the other horrible side effects this drug causes. Regardless if the risk is low, people get it from this drug just like you. We should be given the option to decide for ourselves once given the info. I made this decision because I was afriad that my uterus was just another cancer factory somehow, not realizing it could be from a drug they insist on me taking after my treatment. I have decided to take a homepathic route for blocking my estrogen after my surgery. Thanks so much for you info.

    pgrace
    I commend you for your thoughtful decision to opt out of tamoxifen.

    I wish you all the best - Mary Ann
  • New Flower
    New Flower Member Posts: 4,294

    Tamoxifen
    I was under the care of a gynecologist. My oncologist and gynecologist would ask if I had any bleeding as I was menopausal after chemo at age 49. No on suggested every four monthly ultrasounds. I had breast cancer Dec of 1999 and am in research study B27. Started Tamoxifen in 1999 as part of the study. I had a D and C in 2004 and had negative findings with two polyps negative. Then I started bleeding during exercise in Feb of 2009 and have been diagnosed with endometriod and serous. I don't think tamoxifen women realize they can get serous which is very agressive. Endometriod is treated curatively with simple hysterectomy for most women. I don't think serous can be diagnosed with ultrasound. If I had it to do over again I would have had complete hysterectomy. They are working on a protein blood test to diagnose serous. I think you are at less risk if you are still menstruating. Remember, I developed this almost five years after I completed tamoxifen. It tends to occur in a thin uterus. Did the D and C trigger it in 2004? I wonder sometimes if there was a bit of of serous in the polyp they missed. I felt safe but wasn't. I did have several negative uterine biopsies; all negative. I disagree with the gynecologist and oncologists; if you are giving women a drug that can cause another cancer and there is a simple way to prevent this with hysterectomy then women should be offered this. I also think our statistics are poor regarding the number of women who get uterine cancer from tamoxifen. I believe it is higher; it is higher in other countries. We need better stats.
    If you want me to join in your discussion group I will. Tell me where and how to go. I don't think enough breast cancer women realize the different types of uterine cancer and what they are really at risk for. Just think, one hysterectomy, no more worries. I know this is hard if you want to have more children. I never did so would have been happy to have hysterectomy. I also don't think the insurance companies want to pay for it. Oncologists don't want to prolong the treatment. I think the cards should be laid on the table and we make our own choices.

    Diane

    Thank you Diane
    for your complete answer. I do not know what to do now. My oncologist want me to switch from Tamoxifen to Arimidex.
    Arimidex is aromatase inhibitor and has its own side effects as well. Being 9 months on Tamoxifen and talking to you and others make me more decisive. I will post link to your answer on breast cancer board.
    Thanks again
  • Songflower
    Songflower Member Posts: 608
    Tamoxifen benefits
    I want to discuss some of tamoxifen's benefits. I am in B-27 breast and bowel research study. I started on tamoxifen before I went to surgery; I also had chemo before surgery and also took tamoxifen before surgery with chemo. I could feel my tumor and it would burn when my hormone levels were high and the cancer cells would multiply. When I took my tamoxifen the tumor stopped multiplying at a fast rate and I no longer experienced the burning when my estrogen and progesterone were high. It was stopping the tumor from growing. It is a beneficial drug in estrogen positive breast cancer. I know that it is unknown if it is beneficial for two years, five years, etc.

    I would take it again if I had breast cancer but only if I could have a hysterectomy to prevent uterine cancer. I don't want to sound like I am against the drug in my writings here. There are many benefits in treating breast cancr with tamoxifen. But it can cause uterine cancer. I would not take it unless I had a hysterectomy.

    I also want to say that being in a research group was a really good experience for me. I didn't feel like a "guinea pig" but was proud of my contribution to fighting this disease. Now we have to work on serous uterine cancer. I wish someone had explained to me before I took tamoxifen about the different types of uterine cancer I could get and how agressive some of them could be.
  • New Flower
    New Flower Member Posts: 4,294

    Tamoxifen benefits
    I want to discuss some of tamoxifen's benefits. I am in B-27 breast and bowel research study. I started on tamoxifen before I went to surgery; I also had chemo before surgery and also took tamoxifen before surgery with chemo. I could feel my tumor and it would burn when my hormone levels were high and the cancer cells would multiply. When I took my tamoxifen the tumor stopped multiplying at a fast rate and I no longer experienced the burning when my estrogen and progesterone were high. It was stopping the tumor from growing. It is a beneficial drug in estrogen positive breast cancer. I know that it is unknown if it is beneficial for two years, five years, etc.

    I would take it again if I had breast cancer but only if I could have a hysterectomy to prevent uterine cancer. I don't want to sound like I am against the drug in my writings here. There are many benefits in treating breast cancr with tamoxifen. But it can cause uterine cancer. I would not take it unless I had a hysterectomy.

    I also want to say that being in a research group was a really good experience for me. I didn't feel like a "guinea pig" but was proud of my contribution to fighting this disease. Now we have to work on serous uterine cancer. I wish someone had explained to me before I took tamoxifen about the different types of uterine cancer I could get and how agressive some of them could be.

    Diane,
    Thank you for clarifying your position. I am glad that you are back to Tamoxifen discussion.
    Recently I saw my gynecologist and discuss Tamoxifen issue with him. He does not think that I need to switch medication. He is against hysterectomy. I myself have not been ready for another major surgery yet. Since radical modified mastectomy even I do not have any regrets about my decision, I realized that each organ has its own purpose and helps whole body functioning well. My doc did lining biopsy, it came back negative and i have been continued taking Tamoxifen. It is a very difficult dilemma for me and I have been reading and researching on this subject.
    Thank you very much for your responses and involvement in Tamoxifen clinical studies & discussion.
    Happy and very healthy New Year!!.
    New Flower
  • Songflower
    Songflower Member Posts: 608

    Diane,
    Thank you for clarifying your position. I am glad that you are back to Tamoxifen discussion.
    Recently I saw my gynecologist and discuss Tamoxifen issue with him. He does not think that I need to switch medication. He is against hysterectomy. I myself have not been ready for another major surgery yet. Since radical modified mastectomy even I do not have any regrets about my decision, I realized that each organ has its own purpose and helps whole body functioning well. My doc did lining biopsy, it came back negative and i have been continued taking Tamoxifen. It is a very difficult dilemma for me and I have been reading and researching on this subject.
    Thank you very much for your responses and involvement in Tamoxifen clinical studies & discussion.
    Happy and very healthy New Year!!.
    New Flower

    Tamoxifen
    I had many uterine biopsies and even a D and C during my ten years after breast cancer. I know it is difficult to go back and do another surgery but I would do it anyway. I have been completely surprised that my complete hysterectomy has not adversely affected me sexually and my desire is as strong as ever. I have no problems at all with urination. I don't feel any different in these areas and I have had radiation! Perhaps when you are further out from your mastectomy you may consider it. I strongly disagree with your gynecologist.

    I think it is worrisome that serous cancer of the uterus is hard to pick up on endometrial biopsy. We certainly need more research in identifying this cancer early. It is more life threatening than breast cancer.

    Best wishes in the New Year.

    Diane
  • upsofloating
    upsofloating Member Posts: 466

    Tamoxifen
    I had many uterine biopsies and even a D and C during my ten years after breast cancer. I know it is difficult to go back and do another surgery but I would do it anyway. I have been completely surprised that my complete hysterectomy has not adversely affected me sexually and my desire is as strong as ever. I have no problems at all with urination. I don't feel any different in these areas and I have had radiation! Perhaps when you are further out from your mastectomy you may consider it. I strongly disagree with your gynecologist.

    I think it is worrisome that serous cancer of the uterus is hard to pick up on endometrial biopsy. We certainly need more research in identifying this cancer early. It is more life threatening than breast cancer.

    Best wishes in the New Year.

    Diane

    Tamoxifen and UPSC
    Finally back in this discussion... saw my gyn-onc Tues and commented on numbers on this site with breast cancer, Tamoxifen Rx, and subsequent UPSC, as this has been a concern of mine. He is head of Gyn-Onc Dept at UCSD Medical Ctr. Per his discussion, the relationship is breast cancer and UPSC not the Tamoxifen and UPSC. UPSC is tied to ovarian cancer - same behavior, etc., just arises in endometrium instead of ovary. The uterine cancer linked to tamoxifen is a different cancer type. The link is breast cancer, ovarian cancer with UPSC a variant of ovarian, and hence it is treated like ovarian ca.

    My original BC (’93) was Stage IIB at diag (4 cm tumore and 2 1 cm. tumors in Rt breast, 6/15 +ve nodes), treated with radical mastectomy, lymph node resection; chemo with Adriamycin and CMF; no radiation ( bad rec.! as recurrence in '99 was local in skin, surrounding implant, and into chest wall muscle). Treatment was add'l surgery, radiation, and Tamoxifen. I've been breast cancer-free since.

    I'm now on Femara for another 1-2 years. I definitely felt 'safer' and more in control taking a medication rather than just hoping for the best. Another concern with prophylactic hysterectomy, in order to avoid subsequent cancers, is that the initial cell changes could have occurred already and stray cells could have moved on into the peritoneum, lymph nodes,etc. leaving one feeling safe while this insidious cancer could be chugging quietly along, unbeknownst to anyone. I guess I often feel, "you can run but you cannot hide." So taking the best care of our bodies and keeping as healthy in body and mind as possible is our best defense ... AND our best offense.

    I'll be starting Doxil Rx in a couple of weeks if all goes according to plan as para aorta lymph node biopsy in Oct showed UPSC cancer cells. Original UPSC Dx / extensive (incl. splenectomy) surgery Jan '08; chemo Rx only with Carbo & Taxol.
    Hang in there and Keep on fighting,
    Annette
  • Songflower
    Songflower Member Posts: 608

    Tamoxifen and UPSC
    Finally back in this discussion... saw my gyn-onc Tues and commented on numbers on this site with breast cancer, Tamoxifen Rx, and subsequent UPSC, as this has been a concern of mine. He is head of Gyn-Onc Dept at UCSD Medical Ctr. Per his discussion, the relationship is breast cancer and UPSC not the Tamoxifen and UPSC. UPSC is tied to ovarian cancer - same behavior, etc., just arises in endometrium instead of ovary. The uterine cancer linked to tamoxifen is a different cancer type. The link is breast cancer, ovarian cancer with UPSC a variant of ovarian, and hence it is treated like ovarian ca.

    My original BC (’93) was Stage IIB at diag (4 cm tumore and 2 1 cm. tumors in Rt breast, 6/15 +ve nodes), treated with radical mastectomy, lymph node resection; chemo with Adriamycin and CMF; no radiation ( bad rec.! as recurrence in '99 was local in skin, surrounding implant, and into chest wall muscle). Treatment was add'l surgery, radiation, and Tamoxifen. I've been breast cancer-free since.

    I'm now on Femara for another 1-2 years. I definitely felt 'safer' and more in control taking a medication rather than just hoping for the best. Another concern with prophylactic hysterectomy, in order to avoid subsequent cancers, is that the initial cell changes could have occurred already and stray cells could have moved on into the peritoneum, lymph nodes,etc. leaving one feeling safe while this insidious cancer could be chugging quietly along, unbeknownst to anyone. I guess I often feel, "you can run but you cannot hide." So taking the best care of our bodies and keeping as healthy in body and mind as possible is our best defense ... AND our best offense.

    I'll be starting Doxil Rx in a couple of weeks if all goes according to plan as para aorta lymph node biopsy in Oct showed UPSC cancer cells. Original UPSC Dx / extensive (incl. splenectomy) surgery Jan '08; chemo Rx only with Carbo & Taxol.
    Hang in there and Keep on fighting,
    Annette

    Debate Continues due to lack of research
    I've read several articles that taking tamoxifen actually increases the agressiveness of the endometrial cancer. So one often goes from endometriod to serous. It is an interesting point that hysterectomy may leave behind cells that have all ready metastasized.

    I firmly believe we need more research. Serous is similar to serous ovarian cancer but I don't think the mechanism that starts the cells growing is the same. I've read a couple of studies that found high rates of ovarian cancer in women taking tamoxifen too.

    More research is needed to help us all. I hope that if health care legislation passes it will enable us to do research faster; wouldn't it really be wonderful to have the real data on the numbers of women taking tamoxifen who get other cancers? We would have a better idea which direction to go.

    Annette you have been through so much. My prayers are with you. You are a trooper!

    Diane
  • New Flower
    New Flower Member Posts: 4,294

    Tamoxifen and UPSC
    Thank you for sharing your story Diane. Mine is uncannily similar. I had a breast cancer recurrence (local) 6 years after mastectomy/chemo. I was put on Tamoxifen and my doctor encouraged me to continue taking beyond 5 years "since I was doing so well." At 6 1/2 years I had sudden episodes of major uterine bleeding and underwent a D&C. Multiple polyps were found and most removed but was told no cancer found. I changed to Femara and consulted with a gyn who suggested uterine ablation or a variety of surgical options (hysterectomy). All bleeding had resolved, I was feeling fine, so with no real imperative except to keep from having further bleeding, newly remarried, I passed on such a surgery. 1 1/2 years later my appendectomy turned out to be UPSC. My onc insisted this was not related to Tamoxifen. I had extensive surgery and chemo first half of '08 and now have recurrence in lymph nodes. I'm weighing repeat of chemo. I initially had PET scan in Feb 09 showed enlarged lymph nodes along with ca 125 elevated, 4 months later nodes were shrinking and CA125 back to normal. Three months later, new enlarged lymph nodes, biopsy found UPSC. That was three months ago and recent CT showed they are unchanged.

    The possible Tamoxifen connection has continued to nag at me. No primary was found for UPSC at surgery and is possible it was 'missed' when I had my D&C. It is difficult to know who to believe.
    Annette

    Annette
    Thank you for sharing your story.
    I am very sorry for your health conditions,
    Being diagnosed with Stage IIIC in June 2008 at the age of 46, I am still recovering after treatments. My breast cancer was a ER+ so after Chemo and Radiation I have been on Tamoxifen for 9 months now.
    I have several questions to you and will greatly appreciate if you find time to answer.
    Being a BC survivor for 8 years prior to UPSC what are you thoughts on treatments for estrogen dependent high risk patients?
    At what age were you initially diagnosed with breast cancer and what was your treatment first time before recurrence 8 years ago.
    Thank you in advance,
    New Flower
  • New Flower
    New Flower Member Posts: 4,294

    Tamoxifen and UPSC
    Finally back in this discussion... saw my gyn-onc Tues and commented on numbers on this site with breast cancer, Tamoxifen Rx, and subsequent UPSC, as this has been a concern of mine. He is head of Gyn-Onc Dept at UCSD Medical Ctr. Per his discussion, the relationship is breast cancer and UPSC not the Tamoxifen and UPSC. UPSC is tied to ovarian cancer - same behavior, etc., just arises in endometrium instead of ovary. The uterine cancer linked to tamoxifen is a different cancer type. The link is breast cancer, ovarian cancer with UPSC a variant of ovarian, and hence it is treated like ovarian ca.

    My original BC (’93) was Stage IIB at diag (4 cm tumore and 2 1 cm. tumors in Rt breast, 6/15 +ve nodes), treated with radical mastectomy, lymph node resection; chemo with Adriamycin and CMF; no radiation ( bad rec.! as recurrence in '99 was local in skin, surrounding implant, and into chest wall muscle). Treatment was add'l surgery, radiation, and Tamoxifen. I've been breast cancer-free since.

    I'm now on Femara for another 1-2 years. I definitely felt 'safer' and more in control taking a medication rather than just hoping for the best. Another concern with prophylactic hysterectomy, in order to avoid subsequent cancers, is that the initial cell changes could have occurred already and stray cells could have moved on into the peritoneum, lymph nodes,etc. leaving one feeling safe while this insidious cancer could be chugging quietly along, unbeknownst to anyone. I guess I often feel, "you can run but you cannot hide." So taking the best care of our bodies and keeping as healthy in body and mind as possible is our best defense ... AND our best offense.

    I'll be starting Doxil Rx in a couple of weeks if all goes according to plan as para aorta lymph node biopsy in Oct showed UPSC cancer cells. Original UPSC Dx / extensive (incl. splenectomy) surgery Jan '08; chemo Rx only with Carbo & Taxol.
    Hang in there and Keep on fighting,
    Annette

    Annette
    Thank you for continuing this discussion and answering my questions. I also appreciate that you ask your doctor about connection to TamoxifenI saw my Gyn-Oncologist on Jan5, We discussed Tamoxifen again. He does not think that I should stay away from Tamoxifen due to potential danger of UPSC. So for next 6 months I am going to stay on Tamoxifen. If everything will go well after 2&1/2 years on Tamoxifen my medical oncologist is going to switch me to Arimedex/Femara. I hope new data will be available to improve our future.
    Hugs,
    New Flower
  • Songflower
    Songflower Member Posts: 608

    Tamoxifen and UPSC
    Finally back in this discussion... saw my gyn-onc Tues and commented on numbers on this site with breast cancer, Tamoxifen Rx, and subsequent UPSC, as this has been a concern of mine. He is head of Gyn-Onc Dept at UCSD Medical Ctr. Per his discussion, the relationship is breast cancer and UPSC not the Tamoxifen and UPSC. UPSC is tied to ovarian cancer - same behavior, etc., just arises in endometrium instead of ovary. The uterine cancer linked to tamoxifen is a different cancer type. The link is breast cancer, ovarian cancer with UPSC a variant of ovarian, and hence it is treated like ovarian ca.

    My original BC (’93) was Stage IIB at diag (4 cm tumore and 2 1 cm. tumors in Rt breast, 6/15 +ve nodes), treated with radical mastectomy, lymph node resection; chemo with Adriamycin and CMF; no radiation ( bad rec.! as recurrence in '99 was local in skin, surrounding implant, and into chest wall muscle). Treatment was add'l surgery, radiation, and Tamoxifen. I've been breast cancer-free since.

    I'm now on Femara for another 1-2 years. I definitely felt 'safer' and more in control taking a medication rather than just hoping for the best. Another concern with prophylactic hysterectomy, in order to avoid subsequent cancers, is that the initial cell changes could have occurred already and stray cells could have moved on into the peritoneum, lymph nodes,etc. leaving one feeling safe while this insidious cancer could be chugging quietly along, unbeknownst to anyone. I guess I often feel, "you can run but you cannot hide." So taking the best care of our bodies and keeping as healthy in body and mind as possible is our best defense ... AND our best offense.

    I'll be starting Doxil Rx in a couple of weeks if all goes according to plan as para aorta lymph node biopsy in Oct showed UPSC cancer cells. Original UPSC Dx / extensive (incl. splenectomy) surgery Jan '08; chemo Rx only with Carbo & Taxol.
    Hang in there and Keep on fighting,
    Annette

    Hysterectomy and uterine cancer and tamoxifen (Upsofloating)
    I've been thinking about what your Gyn said. He said if you did a hysterectomy and then had floating cells you would think you were safe but really not. If the cancer orginates in the ovaries, tubes or uterus you would find that on pathology. The cells have to come from somewhere. You wouldn't find floating cells without finding some in the Gyn tract first. Also, papillary serous can start from the peritonal wall. I haven't seen any studies where tamoxifen caused that but some believe if your mother took DES it can increase peritoneum cancer. So what your Gyn said to you does not make sense to me. I think the safest thing to do is to have a complete hysterectomy before starting tamoxifen. Chemotherapy is going to throw you into early menopause anyway. To anyone out there, I really believe that is the safest thing to do.

    Diane
  • MoeKay
    MoeKay Member Posts: 354 **

    Hysterectomy and uterine cancer and tamoxifen (Upsofloating)
    I've been thinking about what your Gyn said. He said if you did a hysterectomy and then had floating cells you would think you were safe but really not. If the cancer orginates in the ovaries, tubes or uterus you would find that on pathology. The cells have to come from somewhere. You wouldn't find floating cells without finding some in the Gyn tract first. Also, papillary serous can start from the peritonal wall. I haven't seen any studies where tamoxifen caused that but some believe if your mother took DES it can increase peritoneum cancer. So what your Gyn said to you does not make sense to me. I think the safest thing to do is to have a complete hysterectomy before starting tamoxifen. Chemotherapy is going to throw you into early menopause anyway. To anyone out there, I really believe that is the safest thing to do.

    Diane

    Although this retrospective
    Although this retrospective study is from 1993, I thought it might be of some interest:

    http://jco.ascopubs.org/cgi/content/short/11/3/485

    The researchers concluded that "it appears that women receiving tamoxifen as treatment for breast cancer who subsequently develop uterine cancer are at risk for high-grade endometrial cancers that have a poor prognosis." The study looked at two groups of breast cancer survivors who later developed uterine cancer: those who had taken tamoxifen and those who had not.

    They state that of those women who later developed uterine cancer, 67% of patients in the tamoxifen group had poorly differentiated endometrioid carcinomas (including adenosquamous carcinoma) or carcinomas associated with poor outcome (eg, uterine papillary serous carcinoma, clear-cell carcinoma, or mixed mullerian tumor), as compared with 24% in the nontreated (no tamoxifen) group.

    MoeKay
  • upsofloating
    upsofloating Member Posts: 466
    MoeKay said:

    Although this retrospective
    Although this retrospective study is from 1993, I thought it might be of some interest:

    http://jco.ascopubs.org/cgi/content/short/11/3/485

    The researchers concluded that "it appears that women receiving tamoxifen as treatment for breast cancer who subsequently develop uterine cancer are at risk for high-grade endometrial cancers that have a poor prognosis." The study looked at two groups of breast cancer survivors who later developed uterine cancer: those who had taken tamoxifen and those who had not.

    They state that of those women who later developed uterine cancer, 67% of patients in the tamoxifen group had poorly differentiated endometrioid carcinomas (including adenosquamous carcinoma) or carcinomas associated with poor outcome (eg, uterine papillary serous carcinoma, clear-cell carcinoma, or mixed mullerian tumor), as compared with 24% in the nontreated (no tamoxifen) group.

    MoeKay

    Thanks MoeKay -- Reviewed
    Thanks MoeKay -- Reviewed this article - I have yet to find any followup with similar reference. Will keep researching.
  • tamoxifen causes cancer

    I am a 8 year breast cancer survivor.  I was on tamoxifen 8 years they extended the 5 years to another 5 years.  I woke up one morning in a pool of blood it continuously flowed.  Ended up in the emergency room.  Got a ultrasound my endometrial lining was very thick.  I had fluid around it with a cyst in my left ovary.  Tell signs Uterus is very large fibroids.  I'm an ultrasound tech so I understand.  I had a pap smear show evidence of malignancy.  Just had a D n C done.  Hysterscopy was performed as well.  Spoke with my oncologist and asked her why she didnt tell me the chances cancer would develop somewhere else.  I took myself tamoxifen.  After speaking with her she told me stop taking it and asked if I had a port.  Yeah for chemo treatments.  I once worked for this practise.  I will not be going back to her for care.  People thaty are making money and it keeps us coming back for expensive treatments and medicines.  For years for most Breast cancer patients taking this drug have had problems with Uterine or cervical cancer taking the tamoxifen for pro long periods of time. NO ONE SHOULD TAKE TAMOXIFEN EVER NOT UNLESS YOU WANT CANCER.

  • Hysterectomy and uterine cancer and tamoxifen (Upsofloating)
    I've been thinking about what your Gyn said. He said if you did a hysterectomy and then had floating cells you would think you were safe but really not. If the cancer orginates in the ovaries, tubes or uterus you would find that on pathology. The cells have to come from somewhere. You wouldn't find floating cells without finding some in the Gyn tract first. Also, papillary serous can start from the peritonal wall. I haven't seen any studies where tamoxifen caused that but some believe if your mother took DES it can increase peritoneum cancer. So what your Gyn said to you does not make sense to me. I think the safest thing to do is to have a complete hysterectomy before starting tamoxifen. Chemotherapy is going to throw you into early menopause anyway. To anyone out there, I really believe that is the safest thing to do.

    Diane

    To late for me Songflower

    To late for me Songflower

  • Tamoxifen and UPSC
    Thank you for sharing your story Diane. Mine is uncannily similar. I had a breast cancer recurrence (local) 6 years after mastectomy/chemo. I was put on Tamoxifen and my doctor encouraged me to continue taking beyond 5 years "since I was doing so well." At 6 1/2 years I had sudden episodes of major uterine bleeding and underwent a D&C. Multiple polyps were found and most removed but was told no cancer found. I changed to Femara and consulted with a gyn who suggested uterine ablation or a variety of surgical options (hysterectomy). All bleeding had resolved, I was feeling fine, so with no real imperative except to keep from having further bleeding, newly remarried, I passed on such a surgery. 1 1/2 years later my appendectomy turned out to be UPSC. My onc insisted this was not related to Tamoxifen. I had extensive surgery and chemo first half of '08 and now have recurrence in lymph nodes. I'm weighing repeat of chemo. I initially had PET scan in Feb 09 showed enlarged lymph nodes along with ca 125 elevated, 4 months later nodes were shrinking and CA125 back to normal. Three months later, new enlarged lymph nodes, biopsy found UPSC. That was three months ago and recent CT showed they are unchanged.

    The possible Tamoxifen connection has continued to nag at me. No primary was found for UPSC at surgery and is possible it was 'missed' when I had my D&C. It is difficult to know who to believe.
    Annette

    DO NOT TAKE TAMOXIFEN

    NOT UNLESS YOU WANT CANCER IN THE CERVIX OR UTERUS.  I'm experiencing it now.  cervical malignancy due to tamoxifen if I can help somebody not to start this drug i would happy

     

  • deanna14 said:

    uterine cancer going to breast?
    Hi Linda,
    My mother had uterine cancer in 1994 and breast cancer about 7 years ago. When she was diagnosed with the breast cancer, we asked if it was in any way related to the previous uterine cancer. We were told at that time (long time ago in terms of cancer research), that typically uterine cancer does not mets to the breast. Not sure it this is the case with your axillary lymph node.
    Also wanted to let you know you will be in my thoughts tomorrow as you begin the chemo journey again. Know that I will be holding your hand in spirit! Love and hugs!!!

    tamoxifen causes cancer

    Tamoxifen can go to other part of the body and cause cancer.  If you're not taking it dont