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Victim of Tamoxifen

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Comments

  • 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