Tamoxifen or no?

Options
Randi74
Randi74 Member Posts: 13
edited November 2017 in High Risk for Breast Cancer

Im at relatively high risk for BC. My mother was dx at 61; sister diagnosed at 45. Both were DCIS, ER/PR positive.

We all had the extensive gene panel testing, no mutations were found.

Im debating what to do. I met with an oncologist who told me my options. Since Im only 43, the only real chemo prevention would be Tamoxifen. However, when I asked her if she woudl take it, she flat out said "no". She leaned towards advising me to exercise to reduce my risk by 50% and eat a "heart healthy diet". She said this type of diet works for BC prevention as well.

Seems like she feels I should wait until menopause to take Arimidex or something similar. (If I wanted to go the chemo prevnetion route)

My 5 year risk of BC was estimated at 2% but my lifetime risk was 27%.

Any advice?


Thanks

Randi

Comments

  • etnasgrl
    etnasgrl Member Posts: 650
    edited October 2017

    I'm not sure what you mean by "chemo prevention" as Tamoxifen is not chemotherapy, but rather an estrogen inhibitor/blocker in the breast.  That being said, my mother was diagnosed with breast cancer at 42. She passed away from metastatic breast cancer at 56. I took all the genetic testing, which came back negative. However, at 41, I was diagnosed with breast cancer. If I had taken Tamoxifen prior to my diagnosis, would that have made a difference? I don't know.....but in my opinion, if you have the opportunity to take it, I would.
    Some women have horrible side effects from Tamoxifen, so you will hear all sorts of horror stories. And then some women do quite well on it. Also, be advised that Tamoxifen can cause a slight risk of uterine cancer, as it increases estrogen in the uterus and ovaries. (But decreases it in the breasts.)
    Whatever you decide to do, I wish you well!! Smile

  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2017

    Tamoxifen for preventative purposes in women at high risk for breast cancer is termed "chemoprevention" even though it has nothing to do with chemotherapy.

    https://www.mayoclinic.org/diseases-conditions/bre...

    I'm not sure what I would do in your case. That's a tough decision. It would be so much easier to just be able to see the future, right?!

  • exercise_guru
    exercise_guru Member Posts: 716
    edited October 2017

    that is a tricky position to be in. Keeping body weight at a healthy level and exercise does help but doesn't so it all. You could research broccoli sprouts and mushroom extract. If I were in your position that is what I would pursue.there was also a study about intermittent fasting and breast cancer as well as not eating in the evening. That might be worth reading.


    Also ask about a 10mg dose iof tamoxifen. I don't the research is there on chemo prevention has studits that though. It's tough to make decisions in such a gray area.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited October 2017

    randi, have you thought about prophylactic surgery? Removing or suppressing ovaries? I am no Dr, but these just came to mind. I doubt insurance would cover those if you have no known mutation, anyway. You can always seek another professional opinion. I had a previous hysterectomy and have a family history also, with no known mutation. I have also heard of topical tamoxifen, but I think it is fairly new. Not sure about it being used as a preventative. There is a lot of information out there regarding supplements, exercise, etc. I have read that turmeric/curcumin and baby aspirin are used as a "preventative" also, but I doubt there have been any formal studies. I think the anti-inflammatory properties are what the potential benefit would be. Best wishes.

  • Mucki1991
    Mucki1991 Member Posts: 294
    edited October 2017

    if all I needed to do was give tamoxifen a try to prevent what I'm currently dealing with I would be all over it. I'm 43 and I'm in my last crappy week of dose dense red devil so my view is but sour at the moment.

  • Randi74
    Randi74 Member Posts: 13
    edited October 2017

    my mother had ovaries removed at 48 and had BC at 61. Besides I’m told since I’m premenopausal I shouldn’t do it .

    Two surgeons I met with strongly advised against PBM.

    Not sure why the oncologist I met with doesn’t think Tamoxifen even with the side effects is a good option . She said she wouldn’t take it in my situation .

  • exercise_guru
    exercise_guru Member Posts: 716
    edited October 2017

    Yes its a tricky position. I have a friend who is around 47 and she had DCIS removed with radiation. For her the Tamoxifen has very little side effects. She thinks it is affecting her eyesight a bit. Your case might be a good canidate for the 10mg option. I know they were looking at the low dose for prevention. In my case I have had a chemo etc so I can't always separate the tamoxifen from the other side effects.

    Another place to research this is called FORCE. It is for women who have a gene that puts them at risk for cancer. I think your way of looking at it is to conclude that you probably have a gene but they haven't found it yet. In my situation I have a gene PALB2 that is newly discovered. The research is thin so I research what they do for BRCA 1 & 2 women I look at the studies they have done for tamoxifen etc with them.

    This might help answer your question. You could meet women who have a gene and are taking tamoxifen as a preventive measure or have been advised against it. An important factor is whether your relatives were ER/PR + or not . Because this is truly the only thing Tamoxifen works on. Many BRCA women are triple negative when diagnosed that is why they don't always recommend Tamoxifen.

    Also my MO told me that 5 years of tamoxifen can provide up to 15 years of protection with certain BC. So you could also choose to wait awhile and then try it or try it now and if the side effects annoy you quit.

  • Randi74
    Randi74 Member Posts: 13
    edited October 2017

    All drs I met with keep telling me I don’t have any gene associated with BC so I shouldn’t take meds.the likelihood of me having one they say is so slim. One oncologist said they are looking into combinations of gene defects that lead to higher risk.

    I know you say I likely do have one but I’m not so sure . No one in my extended family has ever had BC -non of my aunts, not my grandmother or her 4 sisters . That’s why it’s so confusing . My mom and sis both had DCIS Estrogen and progesterone positive .

    I’ll look into 10 mg of tamoxifen. No one ever presented that to me

  • illimae
    illimae Member Posts: 5,710
    edited October 2017

    My mother and her sister were diagnosed in their early 60's in recent years. If I was made aware of my risk, despite my mothers negative genetic testing results, I would have jumped at any opportunity. I found a lump which appeared suddenly last year and within 2 weeks was diagnosed myself at stage IV with a bone met and now recently found but pre-existing brain lesions, I am only 42. I feel perfectly normal and am thankful for that but cancer is sneaky and I'd be more concerned about the family history as an indicator of future risk. Best of luck, whatever you decide.

  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2017

    I wonder in the absence of matched gene mutations amongst mother daughter pairs, if 1) it's something they just haven't found yet, or 2) a similar environmental exposure. My mom and I had exactly the same cancer, but I had a good genetic test other than one gene mutation of unknown significance. I feel like there is something they aren't seeing.

  • illimae
    illimae Member Posts: 5,710
    edited October 2017

    I was told by the genetic councilor that there was likely and increased risk, perhaps in a 20 gene combination unknown at this time.

  • Raelan
    Raelan Member Posts: 200
    edited October 2017

    My mother had breast cancer at age 48, and I was diagnosed at age 49. I'm now 55 and doing well. Both of us had ER+/PR+ BC. My twin sister is now considered high risk, and has been on preventative Tamoxifen for the past 2 years. Her lifetime risk is about 30%. She'll be taking Tamoxifen for a total of 5.

    After surgery, chemo, and radiation I was on Tamoxifen for 2 years, then switched to an AI after it was confirmed I was fully menopausal. I've just completed 5 years of hormonals, and switched back to Tamoxifen for another 5 due to some problematic side effects from AI's. Tamoxifen has been very easy for me and I'm glad it is an option for both my sister and I. Hope to be able to go a full 10 years.

  • beach2beach
    beach2beach Member Posts: 996
    edited October 2017

    That's tough. My sis was dx'd with inflammatory breast cancer at 48. No other family history of it. Back then she tested for Brca..was negative. 48 came and went for me. I had been seeing a breast surgeon yearly for years due to dense breasts. Was like an ins policy for me to have her dbl check. For 2yrs she was able to get me an MRI then 6mths later I did mammo/sonos. Then i was not considered a high enough risk to warrant the MRI's any longer. At 51 I got hit with ILC. Pathology after surgery also showed Dcis/Lcis in the same 7mm tumor.

    Had I been offered the Tamoxifen back then, I don't know what I would have done either. Unfortunately we have no idea what lies in store for us. Did they offer you increased surveillance since considered High risk? Alternating MRI with mammo/sono? At least that way you feel like if forbid anything would pop up, you would know sooner than later.

    Sorry I'm not much help.

  • Randi74
    Randi74 Member Posts: 13
    edited October 2017

    did you or your sis test for the full gene panel ?

  • exercise_guru
    exercise_guru Member Posts: 716
    edited October 2017

    I think increased surveillance is a very good suggestions

  • eyecaresource
    eyecaresource Member Posts: 1
    edited November 2017

    Thank for sharing experience.. Hope you get well without any medical procedures. enjoy life!

Categories