To Tamoxifen or Not. . .

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nightowlhoot
nightowlhoot Member Posts: 45
edited May 2016 in DCIS (Ductal Carcinoma In Situ)

Hi,

Curious as to what your decision making process was regarding Tamoxifen if you had DCIS.

I am doing the Tamoxifen research. . . although I had a Stage 0, non-invasive DCIS, I had a lot of it and it was labeled High Grade with areas of comedo necrosis so I had a mastectomy (left). They are recommending Tamoxifen.

I am premenopausal and the SE do not sound appealing, but I have such low risk and the literature suggests that the benefits are minute. . . I know the SE vary from person to person. . .

I am looking at this:

http://www.breastcancerconsultdr.com/perspectives/...

Thoughts? Advice?

Did anyone NOT take it and have a reoccurrence in the contralateral breast?

Thanks in advance!!!

Night Owl

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  • Annette47
    Annette47 Member Posts: 957
    edited May 2016

    My thoughts on taking it were that I have no reason to believe I am at above average risk for the most serious side effects (uterine cancer and DVT’s), and the less serious stuff (hot flashes, etc) go away if you stop taking it. With that in mind, I went on it with the expectation that if the annoying “quality of life” side effects became too onerous I could always stop, and that way I would know I had given it my best shot.

    That was 3 years ago and I have no regrets. That said, I had a lumpectomy, not mastectomy so have more breast tissue to worry about.

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  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited May 2016

    Thanks Annette47! I will ask my questions at my appointment tomorrow and you are giht I can start it and always stop. . .


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  • kaycee3
    kaycee3 Member Posts: 7
    edited May 2016

    Hello Nightowlhoot,

    I said NO WAY! I know I'm taking my chances, but quality of life is important to me. The long-term side effects that I read about were more frightening to me than the slight chance of cancer returning. I can deal with hot flashes...I get them anyway. Uterine cancer, joint problems, blood clots. Nope, not for me. Since I've been diagnosed, every decision is a gamble...you just have to do what is right for YOU. Go with your gut...and best of luck with your decision!

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  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited May 2016

    Thank you Kaycee3! I know it is so personal a decision and I am trying to follow the gut.

    Best to you

    Night Owl

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  • bella_16
    bella_16 Member Posts: 14
    edited May 2016

    hello all,

    I had lumpectomy in January followed by 6 weeks of radiation that I finished about 3 weeks ago. Met with the MO to discuss going on Tamoxifen. I'm pre-menopausal. My diagnosis was DCIS grade 3 with microinvasion of 1mm. My ER is only 10% and PR negative. My MO states that no matter how positive the percentage is, it is still considered "positive" which means starting tamoxifen for 5 years. I am hesitant based on all the side effects. Anybody else with a weakly positive ER? Thoughts welcomed...thanks!

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  • KWD007
    KWD007 Member Posts: 1
    edited May 2016

    Hi Kaycee,

    I did not know about these side effects that you are talking about. I have been taking the drug for 3 years now. The oncology doctor only told me about hot flashes and joint pain as being side effects.

    So far, the only side effects that I've noticed is some joint pain and being tired. I had DCIS stage 2 and a lumpectomy. It was non-invasive and small. This was 3 years ago. I started to do the radiation and then stopped that after only 8 sessions. The reason for this is a long story so I won't talk about it.

    I'm considering stopping the pill taking due to the costs associated with going to the oncology doctor every year. Once you start taking the pills, the oncology doctor will want you to go for office visits each year. The office visits could be 4 times a year or 2 times a year, etc. In addition to these office visits, the oncology doctor will want you to take blood tests for vitamin D and bone density screening appointments. These cost money and in my opinion are unnecessary. I am not interested in taking these blood tests every year, over and over when I'm taking the same quantity of vitamin d and calcium.

    I just got a bill from the oncology doctor which was 40% higher than the previous bill. It's shocking how these doctors try to take advantage of patients with their over billing.

    I think I will continue taking these pills until the prescription runs out and then stop completely.

    Thanks for the heads up about the side effects! (-:







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  • SkiQueen
    SkiQueen Member Posts: 10
    edited May 2016

    I decided to at least wait; dealing with a unilateral mastectomy (2 years ago) was enough. Wasn't ready to add vaginal dryness, hot flashes, joint aches, and especially more bleeding during menstrual cycle since I' d had a scary 'soaking' bleed, which actually led to my cancer dx (although another SE is Less bleeding and that would be fine with me!) or the more serious, though rare SEs. Oncologist was okay with that since I go every year for mammogram and then 6 mos between for a "palpable" exam. But every time I go to those appts. the pressure is on to start Tamoxifen. I was put on tranexamic acid to control the bleeding and it had been going really well and I was kinda considering Tamoxifen because NO WAY do I want to lose the other breast. I thought I could at least TRY it and then stop if I suffer any SEs. But then just recently I had another 'soaker'. So I am back to "no thank you." It is not an easy choice at all. I feel for you

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  • Annette47
    Annette47 Member Posts: 957
    edited May 2016

    SkiQueen - for what it’s worth, my periods (which had been increasingly frequent and heavy prior to diagnosis) have been much lighter and spaced farther apart since I’ve been on Tamoxifen ....

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  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited May 2016

    Hi all,

    Thank you all for taking the time to answer. I got the script and filled it. Took another couple of days and then decided to take it today as my period came and I remember reading that it’s good to start during your period. Plus needed to be sure I am not pregnant as they scare you about that too. I read the litany of possible side effects,but am hoping it won’t affect me as much. I figure I will give it time and see. . .

    One tip I read was to take it at night so one is not as affected by some of the side effects, so I took it with dinner. So far nothing.

    What tipped me over was Mother’s Day and being out and about with my kids. I don’t want something to happen to my good boob and if this can make a difference, however small, I’ll add it to the other things I am trying to do to avoid another breast cancer. . .

    Best to all of you.

    Night Owl.

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  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    KWD007....Yes the SE can be very real and they are not limited to the ones your doc mentioned. Some women tolerate it well and others don't. My issue is with the docs not disclosing all the SE, especially the serious ones. We all need to make informed decisions about our treatment plans. Good luck to all....

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  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited May 2016

    Agreed dtad. The docs don’t really get into the nitty gritty. Mine did leave it up to me, but he did dispel some of my concerns, I still didn’t take it for a few days after though. I think in part it’s not their expertise as they are not pharmacists. I think they know the common SE, but not all the possibilities. The papers I got from the pharmacy totaled 5 pages! My doc did correct me and said that bone loss was not a concern and studies actually show that Tamoxifen strengthens bones.

    I found this site that notes the most common SEs.

    I am only on Day 2, so far nothing. . . would love to keep in touch to share SEs. . .

    Night Owl.

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  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    nightowl .....I'm glad you are tolerating the Tamoxifen well so far. Continued success on it. However I have to disagree with you about docs not knowing the SE of it. They are prescribing a very powerful drug and they better know the potential SE! I understand your point about them not being pharmacists but I still think its their responsibility. Good luck to all....

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  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited May 2016

    oops. i did not paste the link before i posted.

    http://www.rxlist.com/nolvadex-side-effects-drug-c...

    yes, docs should know the SEs, i agree, i think they and the NPs I’ve encountered seem to know the major ones, but i did my own research before and after. when I got the five pages of stuff from the pharmacy (the pharmacy’s notes on the drug and the drug company’s notes), i realized it is a lot to keep track of.

    still only two days, i believe it takes 2 months to leave the system as they clearly say wait two months before getting pregnant. that speaks to how powerful the drug is. . . i did get talked to twice (at my first post-op appt and then again at my last one) about birth control and NOT getting pregnant while on the drug. they did also tell me to get monitored by an OB re: the uterine cancer.

    there’s no easy answer. weighing all of it is so personal.

    good luck ladies and keep in touch.

    night owl

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  • calidancer
    calidancer Member Posts: 88
    edited May 2016

    I decided I would try it and see how it went. I'm 7 months in. For me the worst side effects are acne and I have a fibroid which has really grown. I knew that was a probable effect. I won't have a hysterectomy for it though. I'm going to see my obgyn next week. I know she will recommend a hysterectomy. If surgery to remove just the fibroid is not an option I will probably stop taking Tam. Seems drastic to put myself through that to halve the risk of contralateral cancer from .6%/year to .3. Not that my MO would quote me any numbers.

    But can't wear a bunch of my clothes because the fibroid is making my tummy stick out. 😋

    I will say that I've not gained weight, not really had hot flashes, just some mild night sweats and constipation. Ugh and my skin is terrible, like pre accutane terrible even with a retinol Rx.

    Tough choices. I'm glad I tried.

    Oh...my er was 25 and PR 10 if I remember correctly. So definitely on the low side.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2016

    I have been on Tamox for over a year now, and the only SE that I have experienced is hot flashes, which I had started getting anyway due to chemopause (which looks like a permanent pause at this. It's worth a try, my MO says that only about 25% of her patients experience SEs from Tamox and only a handful have experienced severe SEs. You can always stop if the SEs are bad

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