DCIS Treatment And Tamoxifen ?

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hmr
hmr Member Posts: 26

My 60 yo mother was recently diagnosed with DCIS. She had a lumpectomy. Her surgeon informed her that the pathology report from this lumpectomy stated that the margins weren't clear and that another lumpectomy or mastectomy would be needed. Here's a quote from the lumpectomy pathology report :

" DCIS intermediate grade, scattered through the area of 4.0 cm. and is 0.1 to 1.0 mm. from the excisional margins "

  She has decided to go with a second lumpectomy instead of a mastectomy. The surgeon informed her that even if this second lumpectomy is successful ( if not she'll need a mastectomy ) that she will need radiation and a 5 year course of treatment with tamoxifen. I know the published details about tamoxifen. What I'd like to hear is some real life input from individuals taking this drug or deciding not to. In addition to likely side effects, HOW IMPORTANT OF A ROLE DOES TAMOXIFEN PLAY IN THE TREATMENT OF DCIS ? My mother is spooked by the duration of treatment and side effects that her surgeon says she is likely to experience with tamoxifen.

Thank you very much for any personal experience and advice that you can share. 

Comments

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited February 2010

    I just met with my oncologist yesterday. I think before your mother panics, you should go find an oncologist and talk to them.  Surgeons are better advised on surgery.

    The purpose of the tamoxifen is to reduce the chance of a reoccurance of DCIS as well as a new bout of some other type of breast cancer in both breasts.  One of the things that is taken into consideration is the grade of DCIS.  This means how aggresive is it.  With low grade DCIS, my oncologist told me that taking tamoxifen doesn't really improve odds of not getting another type of breast cancer.  But in my case, where I have high grade, more aggressive DCIS, it might help.  Also I have some other "funky" things going on and the tamox would help with that as well.

    There are risks ---and they can be scary--but some of them may or may not apply.  For example, there is a risk of uterine cancer.  For me this is a non-issue as I haven't got a uterus.

    Finally on the mastectomy front, I was told by more than one surgeon and plastic surgeon that a mastectomy with reconstruction can be better than a lumpectomy if they are taking too much away.  All of my doctors have said that it is very hard to do some types of reconstruction with a radiated breast because of the changes to the tissue.

    Maybe your mother wants to do more consultations.  The good part of DCIS is that you can take your  time about making decisions.

    Good luck!

  • AlohaGirl
    AlohaGirl Member Posts: 213
    edited February 2010

    I second 3monstmama's advice about talking to a medical oncologist before starting tamoxifen.  In my case, two medical oncologists, the radiation oncologist and the surgeon all recommended tamoxifen because of my age (40 at time of diagnosis) and because my DCIS was on the higher grade end of things (apparently somewhere between intermediate and high).  It is worth your mother talking to the docs to understand her risk of a recurrance or second cancer without tamoxifen and with tamoxifen so she can make informed decisions.

    That said, I have been on tamoxifen for about 4 months now with no major side effects.  A little more anxiety than usual, some pressure between periods and low sex drive (sorry to be blunt), but that is it.  No hot flashes.  The doctors felt that since I had been on the pill for so long with no clotting issues it was extremely unlikely I would have problems on tamoxifen.  Of course, I need to be (and am) aware of the endometrial cancer risk.  I was really nervous about starting it but so far it really hasn't been bad for me.

    Good luck!  I'm sure you are a tremendous support to your mom!

  • tamgam
    tamgam Member Posts: 255
    edited February 2010

    Alohagirl-  I read this thread sometimes and just wanted to say it is really good to hear that not everyone has all the SE from Tam. I have invasive tubular carcinoma as well as DCIS.  I am having a dmx in 4 weeks and the plan right now is just the Tam. for 5 yrs.  The SEs can be very scary. I think tamoxifen is what I worry about most.  I hope I fare as well as you on it.  I see my BS Mon.  Any suggestions on what I should ask him as far as the Tamoxifen?

  • GryffinSong
    GryffinSong Member Posts: 439
    edited February 2010

    I had IDC and DCIS and am on tamoxifen without any noticeable side effects. The tamoxifen blocks the hormone receptors which feed the cancer. This is assuming that your mom's cancer is hormone receptive. Apparently it significantly reduces the risk of a recurrance, and I'm glad to have the extra protection.

    Hugs to you and your mom, and good luck to her in making decisions!!!

  • AlohaGirl
    AlohaGirl Member Posts: 213
    edited February 2010

    Tamgam, good luck at your meeting with the surgeon!  I don't know anything about tamoxifen and invasive tubular carcinoma, but I know with DCIS one of the medical oncologists I met with wanted to test my estrogen receptor status before putting me on it (though the other didn't mention that).  It might be worth asking about that.  My sense is that if the cancer is ER- it is less likely that the tamoxifen will help prevent a recurrance/second cancer.  Also, I would try to talk to the surgeon (or medical oncologist if you meet with one later) about his/her sense of your risk of recurrance or second cancer with and without tamoxifen and your risk of side effects.  I found it very helpful to sit down with the medical oncologist and talk about risk and side effects and how they might apply in my individual circumstances.  I would think if you are having a bilateral mastectomy (not sure if that was what you meant or if you are having a unilateral), your risks of a second cancer or recurrance from DCIS would be very small.  I don't know about the tubular carcinoma though.  Maybe that is why tamoxifen is being recommended?  Sorry I can't be more help.  Good luck!

  • Cherylmarie
    Cherylmarie Member Posts: 27
    edited February 2010

    Hi...I finished with my radiation in December and got my script for the Tamoxifen but have yet to take it....something in the pit of my stomach just keeps telling me no. When my surgeon first spoke to me about it, it sounded like a no brainer to me.  But, as I began to research it, I just didn't like what I found.  I'm 57, have been through menopause for almost 10 years, and to me, the possible serious side effects are very worrisome.  I wish I could help you in some way, but I can only speak for myself....I would like to see statistics of those who have taken if for five years and those who didn't and what the recurrence rate is. 

    I can tell you that ever since my diagnosis, there isn't a day that goes by that I don't think about cancer....I pray alot and try to stay positive....this forum is such a wonderful place to come for support....no one can understand how this affects someone more than those who have gone through it. 

  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited February 2010

    Tamoxifen is to prevent the hormone receptors from allowing the estrogen to feed a cancer cell.  Even after menopause, we have estrogen in our bodies that is produced by our adrenal glands and fat tissue.  An estrogen negative woman would get no benefit from tamoxifen.  A mastectomy does not prevent the need for tamoxifen or an aromatase inhibitor.  There is still breast tissue that remains, there can still be a recurrance due to hormones feeding the cancer cells.

    I will complete my five years on tamoxifen in July.  I have been fortunate to have had few side effects other than hot flashes and some joint pain.  When I first started taking it, I had several "hit and run" side effects, but for the first month only, once my body acclimated to it, the odd side effects disappeared.  I have an elderly aunt who was diagnosed with bc about 30 years ago and was put on tamoxifen.  She is in her 90's now and is doing extremely well, no recurrance.  For myself, I considered it my insurance policy.  If God forbid I were to have a recurrance, I wanted to know in my heart that I had done everything available to prevent such a thing from happening.  Hopefully your mom will be like so many of us and have few side effects at all. Tamoxifen has been the drug of choice for DCIS for many years and has been proven successful in preventing cancer from returning in the affected breast and keeping the healthy breast cancer free.

  • adrienne2
    adrienne2 Member Posts: 183
    edited March 2010

    CherylMarie, you can find the statistics you asked about here: http://www.dcis.info/understanding_risk.html (scroll down toward the bottom of the page).

    The differences in outcome aren't huge, but I decided to take Tamoxifen. I am nervous about the side-effects, but on the other hand, I've taken other drugs with nasty possible side-effects, and I didn't have them. Also, if I should have a recurrence later, I know I'd be beating myself up for not taking it (that's just the way I am -- I'm not saying that you would feel the same). I took my first pill yesterday, so I can't say anything about side-effects. Fingers crossed.

    Congratulations on finishing radiation treatments. 

    adrienne 

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2010

    OK, so I am going onto the other track with Tamoxifen. I had Grade "0" DCIS, which was successfully removed with clear margins a week and a half ago. My chances for recurrance were approximately 5%, and the Tamoxifen would only alleviate it by 1/2, bringing my overall risk for more cancer to 2.5%. With the other types of cancers that Tamoxifen seems to increase (uterine and liver), I decided the path of less risk is to not take Tamoxifen.

  • 2xDCIS
    2xDCIS Member Posts: 11
    edited March 2010

    Definately talk with a medical oncologist about tamoxifen. I assume that she is post-menopausal and therefore can take one of the aromotase inhibitors. Might be a better option for her.

    Jilda

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