Does anyone say no to Tamoxifen

I had not heard/read that pre men women with bc had different risk for tamoxifen...it bothers me that my onc didn't discuss this. She pushed for me to do the tamox but I just flat out refused and she eventually listened. I had ovaries out instead which isn't fun either, but much lower risks to manage than 5 years of tamox. We really do have to be our own advocates!

I said NO to tamoxifen...and NO arimidex...and NO to radiation. Just had a lumpectomy with very wide margins and single node SNB back in 3/2004. My 5 year mammogram will be done on 3/11. I made a careful assessment of all my prognostic factors and came to the conclusion that none of it was really necessary.

Hi Lisa!

I have a bunch of info on DIM  I will PM some links to you there are a lot of studies etc.  Right now I take a multi which has EVERYTHING in it! such as all the usual suspects and also includes: BioFlavonoids,Choline, Fatty Acids, Fiber, Ginko Biloba, Biotin and loads more stuff, I also take in approx 40grams of fiber per day, Plus 2,500mg of VitD3, CoQ10, Omega 3 (I get this by taking FlaxSeed and FlaxSeed Oil), Tumeric, Iodine, Calcium Carbonate.  I am seeing a NMD also and I am sure once I get my blood test results in a couple of weeks, she will tweek the things that I am taking.  I am glad you like the signature, its been my mantra for so many years and it really does get me through!

Lorraine ox

Hi Jamie6, have PM'd you!

Lorraine

I firmly declined tamoxifen. Along with fairy49 I also had a gut feeling tamoxifen was not for me. I am 2 yrs out of treatment for DCIS lumpectomy/reincision plus radiation. No node involvement.

I can remember the Dr. telling me "it was only a pill I could take it and stop at any time" my reply was "yes but it is a pill with SE I am not willing to risk" no more discussion on tamoxifen after that visit.

Skippy - Talk with your GYN and make your decision on what is best for you. Good Luck.

WingGirl

Fairy49,  I had a bm/expanders February 23rd.  I'm just finishing up my fills and have an appointment with a med. onco in two weeks.  My bs told me I wouldn't need any follow up treatment but I want the tests to find out if the cancer was genetic.  This Tamoxifen thing has been on my mind and I'm struggling with it.  I eat very healthy and I exercise like a mad woman.  About 25 years ago I had to take a steroid and it made me crazy....I know I can't do that again.  I was wondering if you could send me the link with info about DIM...I have never heard of it until now. 

Here are some of the links I have on DIM, I know Fairy49 has more

http://www.dimfaq.com/index.htm

http://www.diindolylmethane.org/molecular_biology.htm

http://mct.aacrjournals.org/cgi/content/full/6/10/2757

I had breast cancer in 1985..had a lumpectomy, removal of all of my lymph nodes and 25 radiation treatments.  Tamoxifen, at that time, was an experimental drug, so my insurance would NOT pay for it, so, I did not take it.  In January 2009, I got diagnosed with a new breast cancer in my other breast.  I went 23 years without cancer and without Tamoxifen.  I am supposed to take Tamoxifen this time after my radiation is finished, but, I am not for sure.  The side effects sound horrible and I don't want to spend 5 years feeling like crap just for some percentage that some drug company probably made up.  Not sure...................

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kdholt wrote:

"Can anyone tell me - do women with low grade cancers tend to not do as well on tamox. I mean is it not as effective or are there studies out there that show these women tend to get more aggressive cancers if it comes back while on tamox? Are they any women out there that have had low grade breast cancer that are taking tamox or have taken it for five years and doing well? I would love to hear from you."

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Women with low grade cancers ( both invasive and insitu), especially if diagnosed when still small in size, node negative and with wide, clear margins generally do very well anyway - with or without tamoxifen and especially within the first 5 years. When the original cancer is low grade, any recurrence that might happen from that cancer is usually going to take much longer to show itself than with a cancer that was higher grade and more aggressive from the onset.  

So for example, if you were to put together a study on the effectiveness of any given treatment over a 5 year period where the majority of women in it all had only small, low grade, node negative, well excised BC, then the results of that treatment will predictably appear very favorable because very few of those women would have had a recurrence even if they hadn't recieved the treatment in question.

As to the possibility of developing a more aggressive recurrence or new primary after treatment with tamoxifen...yes, there have been some concerns raised through the years regarding that issue. Some small studies have indicated that although tamoxifen treatment does tend to reduct the risk of ER positive recurrences and new primary breast cancers, it also seems to cause some of the recurrences that do happen to be ER negative and thus more aggressive.

http://www.fhcrc.org/about/ne/news/2001/07/03/tamoxifen.html

Second Breast Cancers May Be More Difficult to Treat in Women Who Take the Drug Tamoxifen, Study Suggests

"Among women who take tamoxifen after an initial breast-cancer diagnosis, our study and numerous random trials suggest that tamoxifen will decrease a woman's risk of developing cancer in the other breast," Li said. "But if they do develop a tumor on the opposite side, our study suggests that the cancer is more likely to be ER negative, which is associated with a higher mortality risk." Li and colleagues' data analysis showed that 27 percent of the contralateral tumors that developed in tamoxifen users were ER negative, while only 4 percent of the contralateral tumors that developed in non-users were ER negative."

http://jnci.oxfordjournals.org/cgi/content/abstract/100/20/1448

Tamoxifen Chemoprevention Treatment and Time to First Diagnosis of Estrogen Receptor-Negative Breast Cancer

"Conclusion: Although tamoxifen treatment does not reduce the incidence ofER-negative breast cancer, it may have advanced detection ofsuch tumors by approximately 1 year, compared with that in theplacebo arm. The time to diagnosis of ER-positive breast cancerwas similar in both treatment arms. ^"

Thanks for all of this info even though, it all scares me.  Please read all of the studies and web sites carefully.  There are other conclusions that are drawn.  I am going to get this information to my medical onc to see what he says.

E 

When I was diagnosed in 12/2002, I said to my Dr., lets just get the tumor out, and then I am done. He said "That is your choice, but if that is all you do, just understand that you may be back in my office and next time we might not be able to fix it"

After being a patient at Memorial SLoan Kettering since 2002, I have started to see things in a new way. I am greatful that I don't have to lose an arm or a leg, or a kidney or a liver, I am greatful that I don't have a cancer they can't figure out. When I sit in a waiting room next to someone with pancriatic cancer, or share a hospital room with someone who had no warning before thier BC spread throughout their body, I know that the turmoil of decision making is a gift, that I have been given a chance to try and alter my destiny, that I have a chance to reduce the chances of not watching my daughter grow up.

The pain, exhaustion and indignity of radiation was nothing.

Losing my breasts was nothing.

Night sweats and hot flashes were nothing.

Why, because I know that above all else I want to stay alive,  and I want to avoid hearing a Dr telling me I have Cancer again.

There are a lot of opinions out there, and there is no right answer for everyone. but each time I have to make a choice that I wish I did not have to make, and each time I make a pro/con list, I can tell you that there is no con that has outweighed the pro of staying alive.

 My Aunt Moe died when she was 35 years old from BC, that was back in the 70(s) and there were no choices,(they didn't even recomend chemo back then)  she left two little kids. When my cousin (her daughter) and I talk about how much some of the choices and side effects  the two of us have endured, suck, she reminds me that nothing sucked worse than growing up without her mother.

Each of us has a different family history and a different genetic story, some got cancer in their thirties like me and all the women in my family (other than 2) some are pre menapausal and some are post. The best thing that you can do is sit down with a Dr who cares and go over every detail of you, your cancer, your family history (both sides do count, our bRCA gene is on my dad's side only) and have the Dr tell you what she thinks and what she would tell you to do if you were her relative. Then you make your choice based on you.

I can't really give a good answer cuz my situation was a little complicated. I had to have  a total hysterectomy about 1.5 years after starting tamox, so any increase in my SEs were more likely due to  the estrogen depletion from no longer having any ovaries, rather than the tamox itself. ( I really didn't have many SEs before my surgery)

Anne

Dee23! I have said NO to tamox, I take 200mg a day of DIM which is the active ingredient of Indole 3 Carbinol, after my research I found that 13C (Indole 3 Carbinol) was found to be unstable, I am just about to start iodine, I take a lot of supplements including CoQ10, VitD3, Tumeric etc, if you visit the Alternative/Complimentary/Holistic thread you can find lots of great info on supplements, DIM, 13C, Iodine etc.  Its not for everyone, it is a very personal choice, and you have to be comfortable with the decision, however I honestly think its all a crap shoot whatever you do, there are no guarantees with anything so do what you feel good about doing.  Good Luck!
Lorraine ox

Hi Dee23! I never started on tamox, so I have had the surgery and thats been it.  I started supplements in January, I have my follow up with the onc in May.  Try www.bioresponse.com for good quality DIM, this is the one used in the clinical trials.  I am also seeing a naturopathic MD, who is a microbiologist and specializes in women's health, hormones etc.  I just had 17 vials of blood taken ouch!! so I am interested to see what the results are with regards to estrogen, VitD etc. Once I get the results she is going to tailor my supplements based on whats going on with everything! I may freak out my onc even more and use progesterone cream yikes!

Lorraine ox

Tamoxifen doesn't cause new primaries that are er-, it simply does nothing to stop them.  So if you get a new primary while taking tamox it will most likely be er-.  You would have gotten it regardless.  But you may avoid a new er+ cancer and, more importantly, mets from your original cancer.