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How to prevent breast cancer.for your daughters and sisters

burcu123
Posts: 70
Joined: Jan 2013

Over the last 30 years there has been tremendous improvements for the treatment of breast cancer. Many of us , including me owe our lives to these improvements. Also promotion of early diagnosis and education about breast cancer saved many lives.

However even today , breast cancer treatment is still brutal. It consists of poisons, mutiliation and burning.

In the shade of mamogram what is lost is prevention. Today almost all women believe there is no way to prevent breast cancer except some pseudo-medicine like eat brocolli a lot, exercise, breast feed your kids for a prolonged time( like itis possible in todays modern life) , have children at 16 year( excuse this is called teenage pregnancy , in our modern society it is suppossedto be acoided). everybody thinks only thing that can be don eis early diagnosis. I hav enothing against early diagnosis or mamogram. It is great.

Actuallt there is very effective FDA approved medications to prevent breast cancer in high risk women. Your primary care physician or gynecologist will not offer you. Because they are not familiar with it. This is too much out of their comfort zone. Just like mamogram 40 years ago. We the people has to educate ourselves and demand it. Otherwise thay will never offer it or learn about it.

Please pink sisters disseminate the word, it is very important for your daughters and sisters too.

 

The cornerstone study that has proven tamoxiphen is effective in preventing breast cancer is called. The National Surgical adjuvant Breast and Bowel Project. This is the Bentley of studies. It is the king of the studies, meaning a very very good study. It has 13000 subjects an impressive number. It was placebo controlled, double blinded( menaing the best quality of science). the women in this study was randomly assigned to placebo or tamoxiphen. During the 5 year follow-up period women taking tamoxiphen cut theri risk of developing breast cancer by half. For ER positive cancers woemn taking tamoxiphen cut their risk 70%. Tamoxiphen also decreased risk of ductal carcinoma insitu by 50%.

There is side effects to tamoxiphen but compared to breast cancer and it's treatments they are nothing. think about it at least 6500 women took it for 5 years. If side effects were so bad could they take it for 5 years.

Also side eefects will go away after you stop taking it.

Younger the patient most feared but rare side effects like uterine cancer risk and blood clothes will less common.

 

Two other drugs with less side effects Raloxiphen ( cuts breast cancer risk by 30 to 40%, has much less chance of causing uterine cancer and blood clothes) and Arimidex( cuts breast cancer risk by 70%, mostly ER positive cancer but has some effect on ER negative cancer prevention too) are only approved at this time for postmenapausal women. There are some small studies trying raloxiphen on premenapausal women too but these studies are small and not conclusive yet.

 

Please know your gail risk index, ( you can google this, komen's web site and NCI site has it) If you are over 1.6% , you are a candidate for chemoprophylaxis.

If every women with this criteria is treated 30,000 cancers will be prevented( will never happen)

 

PLEASE SPREAD THE WORD FOR PREVENTION, MEDICAL COMMUNITY IS NOT DOING THIS. GOOGLE CHEMOPREVENTION FOR BREAST CANCER IF YOU DO NOT BELIEVE ME.

DEMAND PREVENTION. AN OUNCE OF PREVENTION IS BETTER THAN A POUND OF TREATMENT.

So frustrated I was never offered prevention altough I am clearly high risk. I may not have to have cancer,

camul's picture
camul
Posts: 2117
Joined: Dec 2010

I was on it after my first bout in 2002, and the side effects became toxic to my system.  I had a recurrance in 2010, and went back on it, I lasted this time for 6 months although the last month it had become toxic on my system, my doctors did not think my body would tolerate Arimidex (lwhich has many negative se for many).  Luckily I have been able to tolerate Evista which is also a hormone blocker. 

As frustrating as lack of teaching on prevention is, there is also the problem of so much being spent on early detection and first line therapies, there is about 2% of all monies collected only going to advanced bc research, even though we are losing 40,000 people alone in the US every year.  And as reported by The American Cancer Society, 30% of all of us diagnosed with bc will end up with stage IV. 

Yet, there are commercials on TV stating that with early detection, bc can be 100% curable.  Yet, there is no cure for BC, so how can ads to donate be so misleading?  We are quite certain that my bc is a direct result of massive hormones prior to, and following a hysterectomy at 30,  I even questioned the possibility of BC with all the estrogen, estrace and Premarin they had me on.  The GYN that I saw at a major Menopause Clinic, said how safe these meds were.... 

Needless to say, there are so many things that could help prevent cancers, yet there is no guarantee that any of us still would not get cancer.  I do believe though that there are many things that may lesson our chances, especially diet, exercize, and staying away from known carcenogens, but even healthy people get cancer. 

 

 

 

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

There are many factors that help women decide what to do about their bc.  Age, family status, additional type(s) of treatment necessary, other medical conditions... are just a few.  Before I followed my physican's recommendation to take tamoxiphen I read up on it and its side effects.  In my opinion, there is no preventative pill for bc, (yet).  Any medication can bring about complications and should be taken with caution.

burcu123
Posts: 70
Joined: Jan 2013

YES THERE IS PREVENTION FOR BREAST CANCER. THIS IS A MEDICALY ACCEPTED, FDA APPROVED PREVENTION.

YES AND YES AND YES THERE IS PREVENTION. THIS IS NOT MY OPINION IT IS A MEDICAL FACT.

EVERYONE THINKS THERE IS NO PREVENTION BECAUSE EVEN MOST PHYSICIANS DO NOT KNOW ABOUT IT.

IT SO DIFFICULT TO GET FDA APPROVAL. IT REQUIRES MILLION DOLLAR STUDIES. TAMOXIPHEN IS APPROVED FOR PREMENAPAUSAL AND POSTMENAPAUSAL PREVENTION. IT WILL DECREASE ALL BREAST CANCER RISK BY 50% , ans ER POSITIVE BREAST CANCER RISK BY 70%.

OFFCOURSE ALL MEDICATONS HAS SIDE EFFECTS , FLU VACCINE HAS SIDE EFFECTS.

BY THE WAY THIS YEAR FLU VACCINE WAS 60% EFFECTIVE, DID ANYONE TOLD PUBLIC NOT TO TAKE IT BECAUSE ONLY IT IS 60% EFFECTIVE AND IT MAY HAVE SIDE EFFECTS. NO

WOMEN WHO ARE AT HIGH RISK AND DO NOT HAVE BREAST CANCER YET, PLEASE TALK TO YOUR PHYSICIAN ABOUT PREVENTION WITH TAMOXIPHEN, RALOXIPHEN or ARIMIDEX. DO YOUR RESEARCH. IN MY OPINION COMPARED TO BREAST CANCER TREATMENTS SIDE EFFECTS OF THIS MEDICATIONS ARE NOTHING. BUT IT IS YOUR CHOICE JUST KNOW YOU HAVE A CHOICE TO PREVENT BREAST CANCER.

IT IS NOT TRUE THAT THERE IS NO PREVENTION, THERE IS PREVENTION DEMAND IT.

burcu123
Posts: 70
Joined: Jan 2013

I am so sorry you were not able to tolerate Arimidex , I am happy you are able to tolerate Evista( raloxiphen) . I agree with ypu estrogen seems to be the major hormone responsible for breast cancer. All cancers can not be prevented. However if a patient wants to know if she has any options to prevent breast cancer, she should have the right to know that there are options. After informed about benefits and risk she can make the decision.

 

I so agree with you breast cancer is portrayed so lightly in media. In reality it is a very serioous disease, early detection is not possible even for women who does everything right. It is deadly for many women. It is the number one cause of mortality between women 40 to 55 years old. Treatments for it are brutal.

burcu123
Posts: 70
Joined: Jan 2013

I am so sorry you were not able to tolerate Arimidex , I am happy you are able to tolerate Evista( raloxiphen) . I agree with ypu estrogen seems to be the major hormone responsible for breast cancer. All cancers can not be prevented. However if a patient wants to know if she has any options to prevent breast cancer, she should have the right to know that there are options. After informed about benefits and risk she can make the decision.

 

I so agree with you breast cancer is portrayed so lightly in media. In reality it is a very serioous disease, early detection is not possible even for women who does everything right. It is deadly for many women. It is the number one cause of mortality between women 40 to 55 years old. Treatments for it are brutal.

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

Some breast cancers could be prevented this way.  In fact, my older sister completed 5 years of aromasin therapy in an attempt to prevent the fate of her three sisters (all with ER+ tumors) and, so far, so good.  However, as evidenced by this board there are still many breast cancers that will not be prevented by preventive hormone therapy: IBC, triple negative, etc.

Tamoxifen can have serious risks (clots and uterine cancer to name two) and is not recommended for preventive therapy in women who are not at risk.  But there's the rub, because who is at risk? My family aside, most women do not have a family history. 

 

camul's picture
camul
Posts: 2117
Joined: Dec 2010

And here I am stage iv. I have to believe that chemo, hormone inhibitors and compliance as cc calls it have kept me here this long. Unfortunately, my cancer is following the path that has been researched on HRT inducednbc. What this means is that my cancer has never gone into anremission even with almost 2 years of continual chemo, tamoxefin/Evista,radiation, biophophates etc. I have done them all and still it grows. First time I followed drs orders to a t, exercized, ate well etc. yet mine hd the course of Hrt induced bc, in that, it does not respond to chemo, and out of all hrt induced bc, even when caught early, I was stage 1, 50% will become stage iv and it is always terminal as the tumors do not respond. Yet , not everyone on HRT therapy will get bc.

VickiSam's picture
VickiSam
Posts: 8412
Joined: Aug 2009

see both sides of the coin, as I like to put it!   I wish there was a pill that would make cancer in general, go away FOREVER.

 

Vicki Sam

SIROD's picture
SIROD
Posts: 2198
Joined: Jun 2010

Dear Vicki Sam

There won't be one pill or one cure as breast cancer has so many different kinds of variation.  It is just the same umbrella that we are all standing under but with different kinds of bc.

Unless that 2% of the funds are changed to at least 30% as in the article Linda has posted, I doubt there will any cure to help those who stage IV in the forseable future.  Komen has done wonders in bringing breast cancer as a word we can speak in public.   They won't be finding the cure anytime soon.  Komen gives more money to education (awareness, early detection) than to research.   Slightly less for administration than research, that is a problem.  They are the ones with the most funds other than our government.  I see both sides of the coin and the only stage that should have funding is stage IV.  All the others will be saved along with them.

Tamoxifen is not a drug to give as a preventative.  I remember when there was some trial on it back when I was diagnose in 1994.  Women did try Tamoxifen as a preventative but the trial didn't go anywhere.  I had talked this problem over with one of the teachers who taught physiology and was an RN.  Her husband was a doctor and her daughter became an oncologist at one of the major cancer centers.  She was vehemently opposed to it.   I at the time knew so little about Tamoxifen and had no opinion (believe it or not Smile.   I had high hopes that Tamoxifen would help me never to experience cancer again.  Instead Tamoxifen allowed a tumor in my axilla to grow for the next four years (my cancer is slow growing).  It was found because the tumor sucked in two nerves and when I moved my arm it caused a lot of pain.   Then it would quiet down and then restart again if I moved wrong.  It then spread to my ribs.  So though I still believe Tamoxifen is a great drug, I would not advise anyone to use it to prevent having breast cancer since we don't know what causes this disease.

Best to you,

Doris

 

burcu123
Posts: 70
Joined: Jan 2013

YEs Tamoxiphen is FDA approved for the prevention of breast cancer in high risk women who dod not have breast cancer.

The study that has bring this issue to day light is called

Adjuvant bowel and breast project. It is one of best studies it is finances by NIH

it proved tamoxiphen is effective

yes doctors are very ignorant about this and im hoping educating public may help break this cycle

burcu123
Posts: 70
Joined: Jan 2013

I am so happy your sister was in the hand of good physicians. May be the fact that she has such a strong family history made her more proactive.

 

I have a family history too. But I was never offered any protection. I found Gail risk index later after I was diagnosed. According to this index at age 43 I had enough risk to be offered chemoprevention. None of my physicians , GYn, internist, radiologist has given me any information about chemoprevention. I had a hysterectomy so uterine cancer risk would not have applied to me. I might not have cancer today if I was offered this treatment. I never had a chance to think about the risk and possible benefits and make a decision

I asked several of my friends who are high risk, they have never heard about this option or ever offered. If they are offered would they accept, I do not know but it is up to the patient.

What I am trying to shout out is there is way to prevent it, especially if you are high risk, problem is no one is likely to tell you about it. It is a lost opportunity.If you are postmenapausal your options are even much better Raloxiphen which is as effective as Tamoxiphen does not cause uterine cancer. Unfortunaltely this drug is only approved for postmenopausal women at this time. There are small studies trying Raloxiphen in premanpausal women too . However this are not large enough to get FDA approval.

 

SIROD's picture
SIROD
Posts: 2198
Joined: Jun 2010

I don't know where you are finding your facts burcu123 but it would be nice if you included citations.

There has been no gaps for me since I was diagnose in 1994, I have always had treatment and continue since I'm stage IV>  I've read a lot before the internet and continue to do so, I have never heard of chemoprevention.  

"I had enough risk to be offered chemoprevention. None of my physicians , GYn, internist, radiologist has given me any information about chemoprevention." 

These drugs are toxic and what in the world will they be killing if there were no cancer cells?   It would be the good cells, wouldn't it?  Why would anyone consent to offering you such an awful option?  How would you have seen a radiologist since they are usually referred to by an oncologist?  Since no one knows the cause of breast cancer they can't prevent when there is no knowledge of the root source, can they?  

I don't believe than any reputable gynecologist would give you a hysterectomy to prevent uterine cancer.  There is more to this story than you are stating.   Tamoxifen is a drug with serious side effects and should not be given "in case" or as a preventative against breast cancer.  It should be used to prevent cancer from recurring for those who have been diagnosed. 

"What I am trying to shout out is there is way to prevent it, especially if you are high risk, problem is no one is likely to tell you about it. It is a lost opportunity"

Breast cancer is not a given even for those who might be in that high risk catagory.   One can't prevent when no one knows the cause of breast cancer.  You are shouting about something you really don't know much about and it might be a good idea to expland your knowledge on this topic a little more.

Wishing you the best,

Doris

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