Tamoxifen? To Take or not, that is the question.

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Hey everyone,  So my question today is whether or not to start tamoxifen.  I was dx feb 08, r mastecomy 7 08, just had my exchange 12-10.  I am er postive, but my brac1 and 2 came back negative.  I really don't know what to do with the tamoxifen.  It has been recommended to take it.  My grandma had bc late in life 80's and my aunt had a lumpectomy in her 60's.  I have gained weight since my surgery in July, I am depressed and just don't feel like dealing with all the other side effects.  This year has been hell for me.  And compared to others I am probably a wining baby, but still my own hell...I lost my dad at 72 Oct 07, left my boyfriend of many years in 07, he got custody of the dog, closed my business in 08 and and and....just can't take much more. I have a new beau and he has been wonderful through the surgery and I have good friends...I am just beyond the stress and don't want to deal with tamoxifen right now.  Am I being stupid? Selfish? My med oncogolist said it probably would be ok to wait a few months, well time is up. Suggestions?  Thanks ladies...Best wishes to all, Renee 

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited December 2008

    Stage 1, grade 1 - If we have to have IDC, this is the better type to have. Still, would be better if our tumors were a little smaller, but still...

    Here's the deal - you will find lots of different opinions on what you should do on this board. There's a whole topic on hormonal treatment. Only you can decide what will work for you. Your diagnosis is very similar to mine, and we are pretty darned unlikely to have a recurrence. So your doctor won't push you, whatever you decide.

    I decided to try the drug, and I don't have any side effects (well, I did for a week or so, because I was so scared of all the horrible side effects I'd heard about). I had a serious depression, but it cleared even with the meds, so it doesn't seem to have been drug-related.

    Tamoxifen cuts my chance of recurrence down to 1 or 2%. I don't want to do cancer again. You can always try and then quit, if the SEs turn out to be too much.

  • car
    car Member Posts: 492
    edited December 2008

    My onc and I decided together that the potential benefit of tamoxifen *in my situation* did not warrant taking a drug for 5 years that would likely have SEs. My only risk factor was not having children, and I also am perimenopausal w/a dx of DCIS, though my tumor was HR+/PR+. We opted for maintaining my already physically active lifestyle, modifying my Mediterranean diet, and maintaining a very low BMI (105 lbs. and 5'2"), which according to recent research provides a risk reduction similar to that of tamoxifen.

    I'll also say that my onc is incredibly vigilant, I'm still seeing him quarterly, I get annual mammos and an MRI every 2 years.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    My onc says that about 95% of oncologist believes in Tamoxifen and give it to all their ER+ patient. Well, he's one of the 5% that believes Tamox doesn't add or remove anything from your chances of a recurrence. He says that he has to offer it but he doesn't find that it will reduce your chances at all. That's his belief, I love my onc because hubby & I aren't pill takers and I wasn't excited at the idea of Tamox for 5 years (chemo & rad is enough for me!). He's totally fine with me not wanting it and agrees. In my case it helps since my ER is barely positive, less than 10% from the biopsy test, and oncotype even says I'm negative so there's no way I'd take it. In the end, you're the one who takes the decision. Knowing how positive you are might help you take that decision. Good luck.

    car - what kind of diet changes do you have to make? I'm curious about this, I'm actually meeting with a nutritionist on Thursday to find out more about good food to not have cancer return. I would prefer changing my diet than taking hormones for 5+ years, but that's me.

  • car
    car Member Posts: 492
    edited December 2008

    It's Walter Willett's diet. Google him (he has a home page at Harvard) or just go to Amazon.com. He has two books--one describing the diet, one specifically for weight loss. His diet is based upon the Nurses & Professionals studies (if he's not the PI he's one of the main investigators and at Harvard) and is targeting most of the American killer chronic illnesses. My onc said he tells most pts. that they should start it. In my case, he said read, evaluate, and tweak. I'm so sold on how it makes me feel that I'm a poster child for what I used to call the roots & berries diet.

    It's higher on the number of fruits/vegetables per day than the typical requirements, includes only whole-grains, and separates the animal protein products from nuts and legumes. Best thing about it is that you can go crazy if you're an olive oil lover like I am. Moreover, bottom tier of his new food pyramid is physical exercise.

    My onc is really sold on it. And as an aside I went in armed w/statistics from the two prospective tamoxifen studies. I have to use a medical dictionary, but I understand statistics and research methods (teach them both), and he didn't argue w/me but agreed that the benefits wouldn't outweigh SEs.

  • unlimited
    unlimited Member Posts: 327
    edited December 2008

    I was dx'd 11/2006... at age 41... Grade 1 tumor 1.3 cm but with that sentinel node being positive ggrrrrr -- more nodes were removed and found to be cancer-free...yeahhhhhhhhhh



    I have been on Tamoxifen since August 2007 ... and have done VERY WELL with that daily pill ...although I will say --- that the first month starting tamoxifen I gained 8 pounds JUST LIKE THAT.......I thought the weight gain came in August when during one week - almost everynite hubby and I went out to eat LOL -- since my kids were on vacation at grandparents home .... but it was the tamoxifen .... I also have an underactive Thyroid ... so I have a double whammy against me regarding the weight gain issues...... I have since lost that 8 pounds .. however it does become hard to continue to loose more weight ..............



    Give Tamoxifen a try many women don't hadly have any SE's from it..... its typical to hear from those that do have the se's since they are seeking ideas to combat the bothersome se's.



    Hugs and happy holidays =)

  • Springtime
    Springtime Member Posts: 5,355
    edited December 2008

    Unlimited,

    Did you have that test to see if you were metabolizing the Tamoxifin? I often wonder about that.... Is it done as a matter of course?

  • roseg
    roseg Member Posts: 3,133
    edited December 2008

    I think that you can always quit taking tamoxifen if you hate it but that you should not wait to take it because you'll only think up more excuses never to try it,

    While your risk of breast cancer having spread microscopically is pretty small it isn't zero. If you turn up in a few years with mets wouldn't you feel better if you'd at least given it a whirl? As I said, you can always quit, although I do advise giving it 6-8 months.

  • rockwell_girl
    rockwell_girl Member Posts: 1,710
    edited December 2008

    try it if you don't like it quite

    I haven't really noticed any bad side effects from it yet

    and if it helps me yeh : )

  • renee66
    renee66 Member Posts: 14
    edited December 2008

    Thanks for the imput ladies.  It was nice to hear your indiviual stories vs. a lecture.  I thought if I came back pos. for BRAC1 and 2 it would just make the process easier to decide.  But, it just brought me round to square one again.  AS you all know there are days that you just can't wrap your head around all the BC stuff.  I will let you know what and when I decide, in the back of my mind I know I will start it...it is just too much right now.  Best wishes and happiest of holiday's with those that you love,  Renee

  • enjoylife
    enjoylife Member Posts: 578
    edited December 2008

     I myself have been taking Ameridex and have had a few hot flashes but that is about it I take it at night because it can make you tired so what better time to be tired and I want anything that is going to help me keep the big C away in the mean time maybe something new will come out ...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    springtime--I just finished my 5 years of tamoxifen and my oncologist never even mentioned the test to me, I only heard about it here on this discussion board. Fortunately I had very minor SEs (mainly hot flashes) and tolerated it well. I think many women miss out on it's benefits (reduces risk by up to 50%) because they are afraid to even try it. It's been studied and used for nearly 30 years with good results. My mom is one example-- had ILC--lumpectomy, radiation and tamox--and is now a survivor of 22 years without a recurrence. Just always remember to make your decisions out of knowledge, not fear.

    Anne

  • prayrv
    prayrv Member Posts: 941
    edited December 2008

    Renee,

    I've been taking tamox since Oct of 2007 with very little (if any se's).  Mine were like Unlimited's basically.  My onc won't do the metabolism test.  She said if I had any se's, it was working.  Take care and blessings in this holiday season.

    Trish

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