to tamoxifen or not to tamoxifen

Isla

Thank you for all your informative posts.  I am also facing the tamoxifen yay or nay decision in a few weeks when my chemo ends.  

I have been reading about the CYP2D6 test to see if you are a metabolizer of the drug.   My Dr said that the option is to start on the drug and see if you are having side effects. If you are, you know the drug is working. If you're not, you know it's not! 

It reminded me of the old way of seeing if someone was a witch with a dunking chair – dunk them in the river, if the person sank or drowned, they were not a witch; if the person floated then they were defintely a witch and were burnt at the stake!

Did any of you who didn’t experience SE from Tamoxifen have this test to see if you were in fact metabolizing the drug?

I would greatly appreciate your thoughts to aid my tricky decision

whitedove

Hi Dcchef, Thank you. Has anyone heard of the option to hormonally have onesself put into menopause.

whitedove

Isla, well said. it is so confusing. They don't stop people from undergoing chemo bec. of SEs...why Tamox?

sherrypl

I took Tamox for 4 months and had bad SE's.  I talked to Onc. and decided to quit until Menopause (I turn 50 in Oct) and then try the post-menopausal drugs. The choice was difficult but I knew I did not want to live the next 5 years feeling that bad.  My loved ones are a bit concerned I made the decision to stop but we have to make these decisions based on our own experiences and then never look back.

sweatyspice

Isla - I have been on Tamox for approx 2 months and am not really having any side effects (other than wanting to eat ALL THE TIME, not sure if it's a SE from the Tamox or a delayed stress reaction or what....)  Anyway, I have a f/u app't w/onc in a week or so and will ask then about the test, whether he thinks the Tamox is doing anything, risks of taking it even if it ISN'T doing much, etc.  At this point, I have no idea.

Blaze10

I, too, am new to this.  I was diagnosed with DCIS in May '10. Had a biopsy in two spots (one benign, the other DCIS).  I had an MRI which showed I was cleared of any other spots.  Had lumpectomy June 4th.  The surgeon had some difficulty in surgery to remove the clips placed at biopsy.  Which resulted in more than normal tissue removed.  I went back the next week for check up and removal of stitches.  The surgeon was still concerned about the clips, because she was not able to find them in surgery (I have very dense breasts). She then told me that I may have to have another surgery (ugh!) I then had to wait til I healed better before they could do another mammogram which was done first of July.  Thank goodness there were no clips!  Then surgeon set up to see the oncologists (radiation and medicine).   I spoke with the med onc who suggested the tamox. and of course the rad onc suggested radiation treatments for 6 weeks.  Has anyone out there opted out of both.  I am seriously considering just staying with the lumpectomy.  I have just turned 49 and have not had any major medical issues.   I don't take medication for the most part (an occasional advil or cold medicine). I have already changed my diet over to healthier whole foods months before I even knew there was a medical issue.  I think the reduction odds are a hit and miss, but still struggling over my decision.  I will go back to speak to my regular physician to discuss more follow up measures without the rad and tamox.  I have read alot of your posts and just have not heard much from those who chose just the lumpectomy.  Also, I quit taking birth control pills 20 years ago due to the side effects I was having with them.  And can easily say it was the best thing I ever did.  I have lived the last 20 years without any pain or sickness.  I was having problems with ovarian cysts and endrometriosis.  This is why I am concerned with tamox.  I just am not a pill taker.

SuperMom101

Thankfully, when I was diagnosed and treated for breast cancer over 9 years ago, it was strongly suggested that I get a second if not a third opinion on my course of treatment, i.e. tamoxifien, chemo, etc. because I was only 37 and pre menopausal with IDC.  So, I did what any sane person with 3 small children would do... I goggled and went to my local library.

Seriously, I took the tamox for 3 months and realized my body needed a rest (I'd also come off of an emergency surgery and the two BC operations).  I also did not receive chemo and I'd be happy to explain why under a different post if anyone's interested. In conjunction with my amazing (and insightful) oncologist - I am fortunate to live in the Boston area - I opted to have my other ovary removed since the first had twsited and died from an 11centimeter cyst which lead to the original surgery.  

Anyway, regarding tamox: My mom's breast cancer returned (she was originally diagnosed post menopausal) and had taken it for the 5 years and my my sister was diagnosed (Stage 0) last year.  It's interesting "there's no gene" and my sister although a vegetarian was a huge dairy (i.e. cheese, yogurt, cottage cheese) person and so is my mom.  Although I could never drink cow's milk, I too was a "healthy" dairy consumer.

Anyway, I have followed Jane Plant's "Your Life in Your Hands" and the "No-Dairy" breast cancer prevention diet for the past nine years and just had my 6 month checkup a few weeks ago. I also steer clear of any and all meat that could possibly have GMO feed or been administered growth hormones and antibiotics because my tumor was hormone receptive.

 I try and keep things simple and sane and not confuse myself with the "latest" science.   My new mantra is: Since when do I need a science degree to know that an apple is better for me than a poptart.  Hey, some people can't eat peanuts.  I can't eat dairy.

There are so many great books and resources out there that weren't available when I was diagnosed and most basically promote a vegan diet.    And, remember to check the funding sources...that way you'll know the person or organization's motives.  Sorry for the off topic dribble.

 An ounce of prevention is worth a pound of cure. - Ben Franklin

Best health always,

sweatyspice

Somehow messed up my cookie settings or something and wasn't able to log in for several days, and now somehow the problem is magically fixed.  No idea why.

Anyway....saw my onc who said I should think about it this way - if the Tamox isn't giving me bad SEs and I think it isn't working in a protective way, then it also isn't working in a destructive way.  In other words, if it turns out not to be doing anything, it's not doing anything - and not to worry so much about gyn cancer, stroke, etc. 

I know he's not a fan of the CPYD26 (whatever it is) metabolism test.  Maybe one of these days I'll see another onc and get a second opinion on that, but for right now I'm all doctored out.  My revision surgery is scheduled for Sept 22nd, and while I guess I should be excited, I'm not.

So I know I'm at a relatively high risk of recurrence, and the Tamox may not be doing much, so I guess this is my diet wake-up call.  I've gotten into a ton of bad habits and changing is hard to wrap my mind around.  Guess I'll be Googling Jane Plant in a few minutes......  (they all say 'pland-based diet' and I say WHAT?????)

iHEARTu

Hello everyone!

It took me 6 months to finally decide to take tamox. after hours of research. 2 months in I don't notice any side effects EXCEPT (get ready for this!!!) my libido is UP!!! Higher than before....can that be possible? My husband is a happier man...lol!

I"m meeting with a second Gyno about ovaries and possibly uterus removal. My Family Physician is strongly urging me to get my uterus out because of the uterine thickening and the chances of uterine cancer. So I'll see next week. My HUGE concern is the weight gain long term. UGH!

I've also been reading in a few articles that women who have been diagnosed with cancer and especially if it's invasive, to take Tamox the rest of their life. Anyone read that?

-catherine