Benefit of Tamoxifen

[WorkingThroughIt]

Hi...

I was diagnosed in 2006 with invasive ductal carcinoma and DCIS.  My tumor was of intermediate aggression, hormone positive and there were zero lymph nodes involved.  I chose to have a mastectomy given my age (45) and size of my tumor (2 cm).  I underwent 4 infusions of AC, and began Tamoxifen a year ago.  

My question is this:  I know that the use of Tamoxifen can reduce the risk of breast cancer by 50% in patients considered to be at high risk.  But if one has had a mastectomy and chemotherapy, and there were zero nodes affected/involved, is there really any benefit to taking Tamoxifen?  Right now the side effects are just making me downright cranky (and yes, I am on Effexor) and honestly the body changes courtesy of forced menopause are not helping the attitude any.  

Can cancer spread even if lymph nodes were negative?

[lhughes]

I've read a number of "studies" and other pieces of info, it seems to go both ways depending on the type of soy.  Soy that is fermeted like tofu and miso has been said to be beneficial.  But other types are not.  

I've read about the "estrogen like" effects of soy, which is why I've always stayed away from them.  My doc usually has a good perspective on things, so that's why I was going to ask him.  

Thanks for the info.

[debbyd]

I was told not to eat soy or take soy supplements.  If one of the first five ingredients in anything is soy, it is off limits.  I was told that soy can metabalize as estrogen in your system.  That is something they give for pre-menopause and menopause (estroven-c and primifen have soy and black cohosh in them)  My doctors think that  taking them before and  then starting HRT was a contributing factor in my breast cancer.  So I would definitely ask my doctors about the soy factor if I were you.  It may just affect women with invasive ductal carcinoma, estrogen receptor positive.

[lhughes]

From my doc today:

Tamoxifen is good for protection of the breasts for at least 5 years.  There was a study in the US that said after that it didn't do much, however, a newer study in the UK said it was good protection up to 10 years.  His opinion, if I'm not menopausal after the 5 years of tamoxifen, I get 5 more years tamoxifen....  If I'm menopausal after the 5 years of tamoxifen, I get arimidex (or some similar drug) for post-menopausal women.

So, I'm in for the long-haul on tamoxifen.  I seriously doubt I'll be menopausal at 42, so I can figure another 3-5 years on tamoxifen after my initial 5 years.  That's my doc's opinion and he works at one of the leading cancer centers in the US.  Having said that, I'm sure all docs have their opinion and all patients are different.  This is my course of treatment, not everyone else's.

Vit D.... good for general use, not necesarily for cancer (Caltrate-D was ok'd...my mom's onc suggested this for bone loss, she is post-menopausal)
Aspirin.... good for general use, not necesarily for cancer (81 mg a day)
Zometa... good if you have Stage IV, I don't

Forgot to inquire about soy...got lost in the tamoxifen discussion.

Good luck to you, hope his answers help.  I think he's a good logical doc who doesn't go out for every small hope.  He's done a lot of studies and these are "his" answers.

[lhughes]

My doc here says 5, but I'll will re-inquire this Tuesday when I see him and get some definite information from him.  Right from the horse's mouth, per se.

:)

My mom had to take it for 5 years and then didn't take anything else 8 years ago.  She was peri-menopausal when she started and menopausal when she finished.  I'm pre-menopausal with no menopause in sight.  

I know that now-days if you are menopausal, there is also Arimidex and the like for aiding in breast cancer prevention.  It is supposed to be a little easier on the body than Tamoxifen, but it has a bigger increase in bone loss...I think that's what I read.  

I will get the doc's answer this Tuesday and report back so that you can know what he said.  I'm also asking about Vit D, aspirin, Zometa, and soy.  I'll share the answers with you on those, too.

Take care!

[Ingem2]

Thank you for answering me.  Your words helped me alot.  I am very greatful  You don't realize it but you just gave peace in my mine.

So Tamoxifen is only good for five years they say.  Then after that I can stop it without taking something else I think ?.   I spoke to some girls that only took tamoxifen for three years  and they said they were told that it is only good for 3 years.   Confused again
and they never took anything else after tamoxifen.

What do you think?



    

[lhughes]

I don't know if this will help, but every case is different.  Your cancer, while it may be very similar to your friends, is your cancer in your body.  We are all different and respond differently to treatments and react differently to everything.

I wouldn't think that your friend's cancer recurrance was related to the tamoxifen.  Tamoxifen works to protect breast cells from the ill effects of estrogen.  So if you have an estrogen positive cancer, taking tamoxifen is supposed to protect you from having the cancer recur there.  That's not saying it can't or won't recur somewhere else.  Cancer is a sneaky foe.  

I'm so sorry for your friend.  Some people just seem to have incredibly bad luck with this disease.  I do hope that you are one of the survivor's.  Good luck to you.

[Ingem2]

Thank you for writing me.


No I never took chemo only radiation like you and Tomaxcin
I  was seeing my radiologist and oncologist every three months for three years
now it is every six months.

The only  other side effect I got from Tomaxcin is crapping of the legs.
severe and my doctor said to drink Tonic Water because it has Quinine in it. It really helps.  I thought it was Potassium but it was not.

I knew a friend that had died from breast cancer and she had what I had and
she went on Toxmaxcin and stopped it in three years.  Then the cancer  came back into her lungs after two years of stopping it.  Before she died she believed that it was the Tomaxcin
So now I get nervous.   The doctors said no .  



  

[lhughes]

Don't really think about the medicines as much as having to go visit a doc about once a quarter.  I see my rad doc every 6 months and my onc doc every 6 months (alternating each doc, so that's one doc once a quarter).  And all the tests!!!

However, to ensure that I'm here for the next 20+ years, I will do what is necessary.  I hope to always be able to walk into a doc's office with a smile and no complaints.  And leave that way!

Yes, Effexor makes you gain weight (maybe not to start, but eventually it will).  Did you take chemo?  Confusion may be residual of that, even though my husband says "no", I think "yes".

[Ingem2]

Thank you for answering me.  I will look into the zometa.  
I have two years remaining for my Tamoxifen but they said that Arimidex complements after stopping Tamoxifen for three years.  So they want me to switch for the two years with Arimidex.   My lympthnodes were not attacked they took out three and they were fine.  It seems to me that we will have to take drugs for the rest of our lives? even after the fives years.   Did you feel that way?.    

I am doing well on Tamoxifen  the only side effects that I get is tiredness and sometimes confused but I fight it and a little irritable but very rear.  I lost weight instead of gaining wait on the Tamoxifen.   I do not want to take Effexor because I think that makes you gain weight.  

Miss Denial

[lhughes]

Tamoxifen is usually prescribed as a preventative for 5 years.  It does have its little side effects, I too was on Effexor for a while.  I did manage to get off the Effexor and the side effects from the Tamoxifen 2 years out from the start have decreased significantly.  Still have some weight gain I'm trying to deal with, but other than that and the occassional "power surge", things have tapered.

Ingem2:  Zometa is a newer bone drug that they are looking at for osteoporosis.  They are also claiming it has been shown to halt metastasis to the bones from breast cancer.  Might want to ask about that one.

I'm on Tamoxifen for the long-haul even though I only had 1 node positive just for the sake of doing something active against the cancer.  It may or may not help in the end, we shall see on that one.  And my countdown continues.... 3 years, 2 months remaining!

Good luck to you all!

[Ingem2]

I am on Tomaxacin for three years now and  I really want to go off it..
I am 61 years old and had breast Cribra form of cancer of the DCIS. It was less then 2cm my doctor said he could not even put it in a level It was a very slow moving cancer and small.  My antibody tests were: ER results 80%, PR 10%, Her2hercep test 1+/Negative, P63 Positive

They wanted me to get off tomaxacin  and go on Arimidex but in order to go on that I had to take something for my bones because I have Osteopenia and Osteoprosis in my right arm.  I tried Octonel for four weeks and I could not walk on my feet on the 5th week.  Went to a foot Dr. because the Metatarsal and my toes became very senitiive where my nerves were swallon and the doctor and had said it was not from Octonel but I disagree I stopped the actonel and in two weeks my feet were fine. I would bet my life it was the Actonel. Anyway  in order to go on the Arimidex I would have to get a shot of Reclast for the bones that you need only once a year.  As confused as I am If Octonal reacted on me like this what would I do for a whole year if relcast did this to me.  The doctor said reclast is different.  Right now they want me to stay on tomaxacin  becuase I am having root canal.   I also hear that Tomaxacin is only good for three years.  

Confuse and sad I really want to stop everything.  

help

  

[WorkingThroughIt]

Hi! Sorry it's taken me 2 weeks to reply.  Thanks for your encouragement.  I "quit" my rebellion and started back on Tamoxifen.  I'm 48, and under 'normal' circumstances probably would not be in the throes of menopause, but am now  - thanks to chemo and Tamoxifen - enjoying the heat, so to speak.  :)  I am not going to take any chances going forward.  God gave me the gift of life, and I plan on doing something good with it.  Take good care of yourself, and stay in touch!

[Sammie4258]

personally, I don't trust cancer period. It's too unpredictable.  I would stay on your course of treatment anyway.  Im sure the doctor has you on it for a reason.  Trust his judgement.  It must be tough going thru menopause at the same time.  Invasive ductal carninoma is what it is.  Invasive means it travels and spreads.  There is nothing to say it won't spread to more lymph nodes.  I would surely stay on tamoxifen.  Hopefully you can put up with it four more years.  Then you will probably be able to stop taking it.  
You might ask the doctor for something different.  
Good luck with it,.  
sammie