Anyone w/ grade 1 tubular IDC choose NOT to take Tamoxifen?

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LoveandLightinLA
LoveandLightinLA Member Posts: 80
edited April 2017 in Hormonal Therapy - Before, During, and After

Hi ladies,

I just met with a MO 2 days ago to discuss further treatment after my unilateral mx / immediate reconstruction that I had 3 weeks ago. Just to give you some basic info: I'm 45, and pre-menopausal. No family history of breast cancer. My BS had told me she didn't think Tamoxifen would be necessary, as my particular type of cancer is tubular, grade 1, and rare (only 2% of breast cancer are this type), and generally does not spread and is very slow growing. My tumor was 1 cm, and did not spread to the lymph nodes. I have been told I don't need chemo or rads.

I was hoping the MO would tell me the same thing, but she still wants me to take Tamoxifen. I have spent the last 2 days researching the side effects of Tamoxifen, and I'm terrified of taking it. All the side effects sound awful, but especially the increased rates of ovarian and uterine cancer. From what I've read, many women end up having to remove their ovaries or uterus due to Tamoxifen use.

I don't know what to do... Should I seek a 2nd opinion? I emailed my BS 2 days ago, no response. I am being treated at UCLA, I did like the MO, but she told me the only side effects were hot flashes and mood swings. Then I get online, and the list of side effects is endless. Do you think if I get a second opinion within UCLA that they will end up telling me the same thing? Should I seek an MO outside of UCLA for a second opinion?

The MO said I should at least try it...and if I'm miserable, I can consider stopping. I am very grateful that my cancer is low grade and slow growing, but the decision to take Tamoxifen or not is very difficult to make.

I did get on life math, and it said that if I take Tamoxifen, it would extend my life by 35 days. I have a .7% expected cancer death rate over 15 years. My life expectancy would be shortened by .2 years (from 37.3 years to 37.1 years).

The MO did tell me to ask my mom about her menopause symptoms, she said mine would be similar. My mom told me that her hot flashes and night sweats were horrible. She had severe depression as well.

Please advise. I have no idea how to proceed. I would love to hear from any of you, especially if you have a similar diagnosis to mine!

Thank you in advance for your help! :)

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  • labelle
    labelle Member Posts: 721
    edited March 2017

    I had 7 mm of tubular BC. My oncologist at Vanderbilt told me if my nodes had been clear, she wouldn't have encouraged me to take tamoxifen due to having tubular BC under 1 cm in size, although she would still have prescribed it if I wanted to try it. Because I had one node involved she told me I should definitely try to take tamoxifen, but it would not be an "unreasonable" if I chose not to. Because pure tubular BC is pretty rare, there haven't been many studies devoted to it or to determining how much those with tubular BC actually benefit from tamoxifen usage , although I did read something that said while AIs are generally more effective with most types of ER+ breast cancers, tamoxifen is just as good for those with tubular BC and my onco has pretty much nixed AI use for me even though I'm now postmenopausal-says it is "overkill."

    I declined to take the tamoxifen for my first year post diagnosis (waiting a year is not recommended, but I had lots of issues from radiation treatment), then gave tamoxifen a try for a year. Right now I'm taking a break because I just can't handle the side effects-not sure whether I'll start taking it again or not. I do know that either with or without tamoxifen, the prognosis for those with tubular BC is excellent and very few of us will have a recurrence. However, many, many people have no problems taking tamoxifen. I'm just not one of them and because the benefits for me are pretty small, I don't have the same motivation to stay on it as someone with a more aggressive type of BC might. For me the decision has been an agonizing one. Of course we all want to do what we can to prevent a recurrence, but no one wants to be over-treated or deal with side effects from a medication they may not need. I would encourage you to see another MO because at the very least you should have been told about the small, but real, increased risk of uterine cancer and the need to discuss possible extra monitoring by your gynecologist-if you take tamoxifen, you should definitely talk about it with your gyno.

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  • Brightsocks
    Brightsocks Member Posts: 159
    edited March 2017

    I also had tubular and I am not taking Tamoxifen due to similar conclusion from my medical team. There are some studies on tubular BC but not as many as the other combinations of BC. Tubular is one of the more rare forms of this disease.

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  • LoveandLightinLA
    LoveandLightinLA Member Posts: 80
    edited March 2017

    Thank you so much labelle and Brightsocks for sharing. I will definitely seek out a second opinion. In my efforts to see the most highly respected MOs in LA, so far either they have a 6 week wait or they are no longer accepting new patients or recently retired. I will not give up! My concern is how long I can wait to make this decision. My MO told me to think about it for a week and let her know. I doubt I can get in to see another MO that quickly. But I will most certainly not be rushing into taking Tamoxifen without weighing all the risks and benefits.

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  • grainne
    grainne Member Posts: 245
    edited April 2017

    hi. I do take tamoxifen and have very few side effects: occasional hot flushes during the day and maybe 1 or 2 very tolerable night sweats each night. My diagnosis is similar but the tumour was larger at 1.3cm, although more than 50% was dcis. One of my margins was narrow and two tiny satellite tumours were found during the lumpectomy. I had rads and was lucky enough to have had no side effects. I want the best possible chance, provided i don't have to significantly impair my qol to get that. Tamoxifen helps protect against mets and also a contralateral cancer.

    Does anyone know if tubular bc is associated with a known genetic risk? My bs told me not but i see that 40% of us have a family history of bc. I don't, but i need to know if i am passing a risk to my daughters. I also read somewhere on these boards that multifocality is associated with a genetic risk, although i haven't seen that anywhere else. Just as i think I'm beginning to move on, i find something else to fret about!

    Incidentally, there seems to be increasing evidence about the effect of exercise on recurrence.... a reduction of up to 40% . Maybe some day soon we will be prescribed a brisk daily run instead of tamoxifen. Who wouldn't swap!!

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  • perl5672
    perl5672 Member Posts: 4
    edited April 2017

    Hi ladies. I had 7mm tubular in November 2015, node negative. I had lumpectomy and radiation. At the time, I opted to not take tamoxifen. I went today to see a new oncologist, because the first one I had was giving me inconsistent information, and I just want to be sure I'm making the right choice for me. The MO I met with today said that it's my choice to take or not take tamoxifen. I wanted to better understand risk, and she said that my risk of getting another BC is about 5-7% over my lifetime (I'm now 48), and taking tamoxifen would cut that in half, to 2.5-3.5%. I came over here to see what other people's thoughts are. Since I finished radiation in January 2016, there's no data for starting tamoxifen now and how much it would prevent a recurrence. Both oncologists said that I can start tamoxifen any time (years from now, if I want) and I would have the same benefit of preventing a second cancer.

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  • Brightsocks
    Brightsocks Member Posts: 159
    edited April 2017

    Here is an interesting study. http://www.cancernetwork.com/review-article/risks-...


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  • LoveandLightinLA
    LoveandLightinLA Member Posts: 80
    edited April 2017

    Hi Perl5672,

    I got a second opinion from another oncologist, and she recommended that I take tamoxifen since I had a unilateral mx, and still had a 25% chance of recurrence in the other breast.

    My surgeon told me she would not be brave enough to NOT take tamoxifen since she had 2 kids. Since I do have a daughter, I have decided to take it and try it out.

    I started taking tamoxifen about a week ago. So far...the only things I've noticed is mild headaches, and exhaustion. When I'm really active and running around, I don't feel the exhaustion so much. Once I slow down, it hits me hard, like I've been run over by a truck. It comes and goes though. Praying that I don't experience any other negative side effects... we shall see.

    Since I had initially scared myself by researching the effects of tamoxifen online, I have decided to take a step back and just see how it affects me personally. Hopefully I will be able to tolerate tamoxifen for 5 years.

    Best of luck to you in making your decision, you can always start and try it and quit if it makes you miserable. That's the mindset I've taken on.


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  • grainne
    grainne Member Posts: 245
    edited April 2017

    That seems an excessively high risk of contralateral b.c. Was it definitely 25%? The recurrence risks given to perl5672 were pretty much the same as given to me: 2or 3% for life, if on tamoxifen for 5 years.. The contralateral risk was also very low. Even for non tubular, it is usually given as .5% in any one year.

    I totally agree with your attitude to tamoxifen: try it and see how you get on. I wonder if it is significant that you don't feel tired when you are busy? The fatigue might be psychological. I thought about bc almost non stop for months and was constantly aware of and monitoring how I felt. I have to say I feel very well now. I found exercise a massive help. My bs told me it would help control side effects and i have no doubt whatsoever it helps mentally. If nothing else, the stats on its effect on recurrence rates would keep me at it. I started off with brisk walking but I'm trying to run more and I'm totally delighted and thrilled that I can now run a mile. I lumber along grimly, purple faced and sweating, more like an asthmatic duck than a real runner, repeating '40%....40%' -like a mantra.

    I've been on tamoxifen for 10 months now. It honestly hasn't affected my quality of life.

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  • LoveandLightinLA
    LoveandLightinLA Member Posts: 80
    edited April 2017

    Grainne -

    That's great news to hear it hasn't affected your quality of life. I didn't know exercise had such an effect on recurrence rates! I will definitely keep that in mind and push myself to exercise more.

    Yes, the 25% contralateral risk does sound high. I don't remember exactly the math, but she explained that I was very young, and that I could realistically live for another 50 years...so maybe that's how she got to that % of risk? I'm not really sure how she got that number...but it worked. I was very reluctant to take tamoxifen but she convinced me to give it a chance.

    Yes, hopefully the fatigue is more psychological. I am just thrilled to be feeling better and getting my energy back enough to be busy and active again. :)


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