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Victim of Tamoxifen

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  • 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

  • I am scarred now
    you ladies make a good suggestionWe have discussed this option at our breast cancer board and found out that most oncologists do not recommend having a hysterectomy to their patients, even postmenopausal women can have estrogen positive breast cancer,
    I am under care of gynecologist who does ultrasound every 4 month. Am I still at risk?
    Thank you for responses
    New Flower

    Breast cancer survivior

    Now facing cervical cancer.  If I had to do it all over again.  I would suggest having hysterectomy to include ovaries cervix fallopian tubes and everythings else after breast cancer.  Then all you would have to worry about is colon and lung.  Then you can take ur chances

  • susie1143 said:

    Tamoxifen
    My mother is in remission from breast cancer and was part of the study with Tamoxifen. So far she seems ok but she hasn't had a PAP in years. I've been after her to get checked for uternine. Not sure of why the ongologist has not given her a PAP. What's ironic is she is high risk for uterine and I'm now high risk for breast. She did make a comment that if cancer reoccured she did not want to go through chemo again.

    She goes in Jan for a check up and I'm going to make sure that they check her very throughly.

    I missed a few pap smears now

    I missed a few pap smears now I'm dealing with cervical cancer.  Tamoxifen played a big roll of course.  Get checked

  • Abdra75
    Abdra75 Member Posts: 1
    BC IDC

    I was diagnosed with IDC BC and had a lumpectomy It was low grade 1cm. i was 2 positive and lymf node negative my oncologist recommend me to do 4 weeks of radiation and 5 years of tamoxifen 20mg daily. After reading you're stories i'm terrified to take any of it. If I refuse it, what should I take? just take a chance of reaccurances?

  • cindy0519
    cindy0519 Member Posts: 173
    Abdra75 - this is an old

    Abdra75 - this is an old thread and I am not certain if anyone who was posting on it is even on the board any longer.  But for what it is worth here is my 2cents: I was diagnozed with IDC BC (Stage II) in May 2015, I chose to have a unilateral mastectomy (I had had a lumpectomy on the same breast for a benign tumor in my early 20's so another would have left me with little breast tissue and I wasn't going to give this breast a 3rd shot at me).  This meant no radiation would be required but I would have to take Tamoxifen which I started taking in late June 2015.  On Sept. 22, 2015 during a routine follow up with my GYN she found a polyp which she removed, reassured me are normally benign, and sent off for pathology.  On Sept 26, I got a phone call that the polyp was Grade 3 Uternine Papilliary Serous Carcinoma (UPSC).  This call was followed by a call from my breast ONCO telling me to stop taking Tamoxifen.  All my doctors, Primary, breast ONCO, and GYN ONCO, say that my UPSC was not caused by Tamoxifen (they don't believe I was on it long enough for it to have caused my UPSC).  My best advice is to have a long, hard converstation with your ONCO.  Discuss your fears about Tamoxifen and the potential for uterine cancer.  Understand the full picture on the risk associated with not taking Tamoxifen (change in % of recurrence) and then carefully weigh your options. This isn't a decision that anyone but you can make unfortunately and what may have worked for someone here might not be the "best" answer for you.  If you decide to take Tamoxifen I'd advise you to see your GYN regularly for monitoring of the thickness of your uterus.  This can be monitored with a simple ultrasound done in office.  Promptly report ANY changes in your regular cycle, but especially any abnormal bleeding or spotting (no matter how little), to your GYN and have them investigate using an ultrasound or biospy of your uterine lining.  I wish you the best and hope this has helped!

  • Double Whammy
    Double Whammy Member Posts: 2,832
    I had both at the same time

    Cindy, So sorry to hear about UPSC.  I was diagnosed back in 2010 with both endometrial cancer and breast cancer.  Hadn't had any hormone therapy then, obviously.   I was more than a little upset about having 2 primary cancers at the same time.  I was told that it is not unusual for a woman to develop both breast and uterine cancers over the course of her lifetime, maybe a little strange to have them both diagnosed at once, but not unusual to have both.  I get that Tamoxifen can be a culprit and am thankful that both of my cancers were early stage low grade.  I was on Arimidex (I was postmenopausal) and then switched to Tamoxifen because I wanted to stop the AIs to see if they contributed to my hair not fully coming back after Taxotere.  I stayed on Tamoxifen for the duration of the 5 years, but decided to stop at 5 and not go for the now recommended 10.    I remember clearly my oncologist telling me, "I don't have to worry about you developing uterine cancer because you no longer have a uterus".  Tamoxifen is a known contributor in developing uterine cancer, but so is being a woman and so is having had breast cancer - or having uterine cancer and then developing breast cancer.  Absolutely, anyone on Tamoxifen needs to be checked regularly and report any symptoms.  I sure hope oncologists tell their patients and GYNs monitor them regularly.  "They" say the risk is small, but so is ending up bald for the rest of your life from Taxotere.  Best wishes to you.  This is a great group with a wealth of information.

    Suzanne

  • Donna Faye
    Donna Faye Member Posts: 427
    edited March 2017 #47
    Tamoxifen

    Had BC 20 years ago; Dec. 5 , 2017 had sudden discharge like water breaking; saw Gyn; had biopsy;UPSC diagnosis; Jan. 25 surgery; 1a stage;took Tamoxifen for 5 years; great 20 years so grateful for that. Am now 77 years old and see doc post-op tomorrow.  Had chemo and radiation 20 yrs. ago...not sure I want to tackle that again. After all the reading - thanks to others like us - know there are few choices and nothing proven as yet. I am leaning toward observation as I am in NC and Duke has wonderful cancer center. I am an active woman and very independent. Know I do not want to live so long I need assisted living. Have seen my children all find good jobs and wonderful mates, helped rear 3 grandsons, traveled with them...want to do a few more bucket list things and then OK to go. Know if I were younger, I would be more open to treatment but not so sure now. I do think Tamoxifen is why I have UPSC now, and I was told uterine cancer was a possible side effect so was not really surprised when this happened. Just wish I had a hysterectomy 20 years ago.

     

  • mayfair224
    mayfair224 Member Posts: 1
    Did Tamoxifen cause my uterine cancer?

    Hello all, I am very new to the Cancer world. Last year, I had a lumpectomy for irregular cells, I was diagnosed with Atypical Ductal Hyerplasia. I was put on Tamoifen, other than hot flashes and lack of period, I had no other side effects. Sept 8th of 2017, I was on it for a year, October found out I had lung nodules, November PET scan showed 4" mass on my uterus. Although no diffinitive samples have been taken from the uterus to confirm cancer, (they say it's probably in the wall or outside, because the biopsies from inside the uterus are benign), so it is guessed now that I have uterine cancer that metastisized in the lungs. Is there a way to find out if the Tamoxifen caused this? How? I have an appointment with the oncologist on Monday for plan of care, and I'm hoping to get a full hysterectomy. Then on to treatment. I am 48 years old, and I had a regular period up until the day before I started taking the Tamoxifen. Been off the Tamoxifen for 2 weeks now, and have pretty much been spotting ever since.

  • MalibuBarbara
    MalibuBarbara Member Posts: 1
    Tamoxifen after DCIS removal, endometrial cancer 4 years later

    Good day, 

    I was glad to find this board.  I was diagnosed with DCIS in my right breast in March 2014 and had surgery for removal (lumpectomy, though there was no lump) and was subsequently prescribed Tamoxifen, 20 mg 1 x day. Have been taking it faithfully for the past four years.  Saw my GYN a few weeks back as I was, at that time, 14 months period-free, but spotting and wondering about that. She scheduled a surgical biopsy for a uterine sample, since I was too big a pain sissy to have it done as part of my yearly exam.  I had the surgery this past Monday, in which she also removed some uterine polyps. She called me Wednesday, informing me that I have the "early stages" of endometrial cancer. I am scheduled for a radical hysterectomy, via laparoscope, on Feb. 26.  Have had plenty of women who had hyesterecomies for other reasons, assure me that they are so glad they had the surgery, but none of them did so because of the diagnosis I have received.  They cannoto stage it until they have removed the parts and done the pathology, but they are describing it as "Grade 1."  I am seeing my surgeron next Tuesday and am compiling a list of questions. I am wondering if I should keep taking the Tamoxifen, given its correlation to the occurence of uterine cancer, and given that I now have that diagnosis.

    Thanks for any feedback you may be able to provide.

    Barbara

  • Ohio Susan
    Ohio Susan Member Posts: 1

    Tamoxifen after DCIS removal, endometrial cancer 4 years later

    Good day, 

    I was glad to find this board.  I was diagnosed with DCIS in my right breast in March 2014 and had surgery for removal (lumpectomy, though there was no lump) and was subsequently prescribed Tamoxifen, 20 mg 1 x day. Have been taking it faithfully for the past four years.  Saw my GYN a few weeks back as I was, at that time, 14 months period-free, but spotting and wondering about that. She scheduled a surgical biopsy for a uterine sample, since I was too big a pain sissy to have it done as part of my yearly exam.  I had the surgery this past Monday, in which she also removed some uterine polyps. She called me Wednesday, informing me that I have the "early stages" of endometrial cancer. I am scheduled for a radical hysterectomy, via laparoscope, on Feb. 26.  Have had plenty of women who had hyesterecomies for other reasons, assure me that they are so glad they had the surgery, but none of them did so because of the diagnosis I have received.  They cannoto stage it until they have removed the parts and done the pathology, but they are describing it as "Grade 1."  I am seeing my surgeron next Tuesday and am compiling a list of questions. I am wondering if I should keep taking the Tamoxifen, given its correlation to the occurence of uterine cancer, and given that I now have that diagnosis.

    Thanks for any feedback you may be able to provide.

    Barbara

    Tamoxifen after DCIS removal.

    Barbara, I'm very sorry to read about your current problems. I also had DCIS in my right breast and had a lumpectomy in Nov 2015 followed by a second one a year later as the first surgery didn't leave a clear margin. Been taking Tamoxifen since around Feb 2016 - I'd slipped through my oncologist's net somehow and got started on it some 6 months after she'd intended.

    I started researching the side effects of it in earnest today, after having had a polyp on my cervix removed by my GYN last week. He told me Tamoxifen was probably the cause. It was benign. I'm srill waiting for the resut of my PAP smear. And am worried as hell about it all now, with my mind going in the same direction as yours regarding whether a hysterectomy would be the route to go. I'm 52. And whether I want to continue taking Tamoxifen or not. As well as the possible uterine cancer risks, I'm sick to death of waking up with cramp in my ankles and shins so bad it has me screaming out and crying with the pain. That also is down to the Tamoxifen. 

    Anyway. It seems you and I are the only two very recent ladies to join the forum. I'm pleased to meet you. Wishing you the very best of luck with everything Barbara.

  • cmb
    cmb Member Posts: 751 **

    Tamoxifen after DCIS removal, endometrial cancer 4 years later

    Good day, 

    I was glad to find this board.  I was diagnosed with DCIS in my right breast in March 2014 and had surgery for removal (lumpectomy, though there was no lump) and was subsequently prescribed Tamoxifen, 20 mg 1 x day. Have been taking it faithfully for the past four years.  Saw my GYN a few weeks back as I was, at that time, 14 months period-free, but spotting and wondering about that. She scheduled a surgical biopsy for a uterine sample, since I was too big a pain sissy to have it done as part of my yearly exam.  I had the surgery this past Monday, in which she also removed some uterine polyps. She called me Wednesday, informing me that I have the "early stages" of endometrial cancer. I am scheduled for a radical hysterectomy, via laparoscope, on Feb. 26.  Have had plenty of women who had hyesterecomies for other reasons, assure me that they are so glad they had the surgery, but none of them did so because of the diagnosis I have received.  They cannoto stage it until they have removed the parts and done the pathology, but they are describing it as "Grade 1."  I am seeing my surgeron next Tuesday and am compiling a list of questions. I am wondering if I should keep taking the Tamoxifen, given its correlation to the occurence of uterine cancer, and given that I now have that diagnosis.

    Thanks for any feedback you may be able to provide.

    Barbara

    Tamoxifen and Other Recommended Thread to Read

    Barbara,

    I'm sorry you didn't get a response to your question earlier. Sometimes people don't always see new questions when they're added onto very old threads like this one. It's usually more effective to create a new topic so that it stands out on the Board.

    Since I never took Tamoxifen, I can't offer any opinion on that subject. But a good rule of thumb is to call the prescribing doctor, explain your current situation and ask if you should stop taking Tamoxifen right now.

    And if you haven't already done so, I recommend that you read through the post entitled "What do you wish someone had told you?"  https://csn.cancer.org/node/314593 before your meeting with the surgeon next week. While it's also a long thread, it's quite new and had a lot of good information about the questions to ask before surgery. 

  • Trailrunner
    Trailrunner Member Posts: 11
    My oncologist recommends hysterectomy

    I was diagnosed with bilateral breast cancer in November 2017 and started Tamoxifen in January 2018.  Because I tested positive for BRIP1 gene mutation that increases my risk of ovarian cancer, I was sent to a gynecologic oncologist to discuss a salpingo-oophorectomy.  When I saw him, he encouraged me to have a hysterectomy at the same time as the ovary removal because of the Tamoxifen.  I asked my regular oncologist and she agrees.  This way I won't have to worry about uterine cancer from the Tamoxifen and truth be told, I don't do well with needles, so the prospect of future biopsies of my uterus made my stomach drop.  I feel like once my ovaries are gone, the uterus would just be hanging out waiting to get cancer, so I'm having everything removed in March 2018.  I'm not in any way attempting to make light of a big surgery.  Deciding to do the prophylactic ovary removal was a tremendous decision, but since I feel I need the anti-estrogen medication to hold off breast cancer, I better have my uterus removed at the same time.  Hopefully avoid future surgeries and cancer.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited February 2018 #53
    Tamoxifen off

    I have not taken Tamoxifen but if it were me I would call your doctor today and ask about continuing with the drug or not and find out if you can just stop taking it or do you need to taper off it gradually. I had endometrial cancer 9 years ago. I don’t eat foods that are considered photo/estrogens. I also know that women who have had uterine cancer need to avoid any estrogen replacement therapy for vaginal dryness which is a common side effect of the abrupt removal of our reproductive organs. Don’t wait -call your doctor. Hang in there if you are Stage 1 You will probably only need the surgery.

    Lori