Newbie, general "high risk" questions
Hi Everyone,
I am a 39 yo, BRCA1/2 negative, with a strong family history of breast cancer. Maternal Grandmother (diagnosed at 43, dec'd at 47), Mother (diagnosed at 43, dec'd at 45), maternal aunt (recently diagnosed, 52 and also BRCA 1/2 negative),and maternal second-cousin (recently diagnosed, 49).
I have no sisters.
My question is, what can I DO to help reduce my own risk? Or, what could I be doing to increase it?
Thanks!
Comments
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my3girls,
I share a very similar family history like yours with others testing negative as well. Its a real sh*ty place to be....with lots of unknowns and very little answers. I will tell you what I know from the research I have read. There is one important study by Steve Narod, a leading expert with hereditary cancer that pertains to you and your family, I believe. Please read it and share it with other family members. See below:
Breast cancer risks in women with a family history of breast or ovarian cancer who have tested negative for a BRCA1 or BRCA2 mutation.
http://www.nature.com/bjc/journal/v100/n2/full/6604830a.html
Do you have any personal history of breast biopsies and/or atypia? Are you having an annual breast MRI along with mammo/sonograms? Have you had a baseline digital mammogram? Are you having 6 month CBE's? The American Cancer Society recommends MRI for all high risk woman as standard of care.....just in case your insurance decides to fight you. I dont believe they will fight the ACS!!! You must be your own advocate.
Finally, please visit FORCE!! It is the only non profit group devoted to increasing awareness of hereditary BC/OVCA. Go to www.facingourrisk.org and explore the web site and message boards. You will find tons of support and meet other BRCA negative women. Many choose surveillance while others seek preventative surgery. Feel free to PM me anytime if you have any questions.
Lisa
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My high risk counselor told me the best thing I am doing is exercising. I also have mammos every year, clinical exams, and MRIs. My MRIs have been changed from every year to every other year.
I drink brassica tea (from Johns Hopkins). I brew a gallon of iced tea every two days. www.brassicatea.com
For supplements, I take curcumin, vit D3, calcium w/ D, DIM Plus, and CoQ10, sometimes garlic. Can't hurt!
I also had to put down the cigarettes. Wasn't as bad as I thought it would be.
My Gail score is 33%. I hope I continue to be lucky. If not, I am on track for it to be caught early.
Best of luck to you.
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I realize exercise is part of weight control, but several studies mentioned weight specifically.
Obesity is a well-established risk factor for postmenopausal breast cancer, but mechanisms underlying the association are unclear. http://www.ncbi.nlm.nih.gov/pubmed/20579950
Weight loss, particularly among postmenopausal women, reduces risk for breast cancer. Among cancer patients, data are less robust, but we note a long history of poor outcomes after breast cancer among obese women http://www.ncbi.nlm.nih.gov/pubmed/20507889
Obese compared with normal weight women had an 80% increased risk of cancer with more advanced stages (III/IV) and poorly differentiated grade (odds ratio=1.80, 95% confidence interval 1.13-2.86, P=0.014). No significant increase in risk was observed for overweight women.Conclusion:Obesity at the time of diagnosis of breast cancer is associated with more advanced stages and poorly differentiated grade of cancers.http://www.ncbi.nlm.nih.gov/pubmed/20351736
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Dietary factors such as high-fat diets and alcohol consumption have also been implicated as factors that increase the risk for breast cancer. Cigarette smoking, caffeine intake, antiperspirant use, and stress do not appear to increase the risk of breast cancer. It is important to remember that 75% of women who develop breast cancer have no risk factors other than age. Thus, screening and early detection are important to every woman regardless of the presence of risk factors.
Thanks
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Similar circumstances. Did not test for the BRCA gene. But maternal aunt died in '77, mother DX in '94, doing well, sister DX in '98, doing well. I had benign breast disease as well as fibrocystic cysts. I was DX with DCIS in June. I've had mammo's for years. Saw my BS for years, at times every 6 months. I did think at one time of prophylactic surgery. Now I've had a bi-lateral mastectomy. While reading the material my surgeon gave me, the rate breast cancers grow can double in size every 23-209 days. To quote: "A tumor that doubles every 100 days (the estimated average doubling time) would have been in your body approx. 8-10 years when it reaches one centimeter in size (3/8 inch)-the size of the tip of your smallest finger." (2003 EduCare Inc. By Judy C. Kneece, RN, OCN)
This makes me wonder if I should have had this done over a year ago? My DCIS was over 10centimeters. Something for you to think about, especially if you have dense and lumpy breast tissue already. I do not regret having a bi-lateral mastectomy, as there was DCIS (4mm) found in it, too. Hope this helps in your decision.
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leaf-I was just reding about this today. It seems the association has to do with our fat storing estrogen. The link to the article no longer works, so I posted the article.
Breast Cancer - The Real Diet Connection
by Mary Mutarelli
Ever since my breast cancer diagnosis in 1999, I have been trying to figure out two things: why I got this disease, and why the incidence of breast cancer has been doubling every 25 years.
For decades, the media and the medical community have been telling us that it is our ‘fatty diet' that is causing this phenomenon, despite the fact that The Nurses' Health Study, the largest study ever to analyze the role of lifestyle in the development of disease, found no greater cancer incidence between the group with the highest percentile of fat consumption (>49%) and the lowest percentile (<20%). Interestingly, the study did find a correlation between obesity and a higher incidence of breast cancer for only for post-menopausal women.
I thought, perhaps, there would be a variance between vegetarians and meat-eaters, or those who ate vegetables and fruits and those who didn?t, or for the consumption of dairy products, but the study could find no significant difference in the incidence of breast cancer based on these criteria.
Since this study failed to produce any answers, I spent several years searching conventional medicine, alternative medicine, and scientific literature. I found many possible causes, and many theories, but nothing that could begin to explain the astronomical increase in the incidence of breast cancer that had taken place since my grandmother?s time. It did not seem possible that the genes of so many families could have undergone such mutation, in two or three generations, as to account for this epidemic! There were many factors that could be instrumental, but they did not apply in all cases. There was no common denominator, and this was disturbing to me, because I was nearing the end of my five-year treatment, and not one of my doctors had been able to tell me why I had gotten this disease, or to offer any guarantee that it would not recur.
In the course of my research on alternative medicine, I had discovered a nutritional supplement called indole-3 carbinol, a substance contained in cruciferous vegetables such as broccoli, cauliflower, cabbage, and Brussels sprouts. According to numerous in vitro studies, and some animal studies, I-3 C is capable of metabolizing estradiol (the strongest form of estrogen) to a harmless form, 2-hydroxyestrone. I had decided to take this supplement after finishing Tamoxifen.
However, in the meantime, the medical community had begun to regard breast cancer as a chronic disease rather than a curable disease, and oncologists were now recommending total estrogen blockade for the rest of a woman?s life through the use of aromatase inhibitors. A recent clinical trial had demonstrated an improved, disease-free survival rate for patients who followed the five years of Tamoxifen with Femara (93% vs. 87% at the nine-year mark).
Although these drugs do not carry the risk of blood clots, as Tamoxifen does, there are other undesirable effects: elevated cholesterol, osteoporosis, increased risk of cardiovascular events, hot flashes, and joint and muscle pain. Osteoporosis was a very definite risk, since I only weighed 115 lbs., and a study presented at the San Antonio Breast Cancer Conference showed an average of 12% bone loss in a two-year clinical trial. I was not at all confident that oral bisphosphonates, such as Actonel or Fosomax, could compensate for that amount, since they are not well absorbed, even on an empty stomach. (The maximum absorption is 10%).
Despite the risks, my oncologist was trying to persuade me to continue treatment, but I refused, not only because of the side effects of the medication, but because it was important, to me, to be able to tell myself that I was cured, and I could not do that while seeing an oncologist and taking a cancer medication.
My husband found an old book at a yard sale, called ?Breast Cancer, A Nutritional Approach,? written by a famous nutritionist, from my mother?s generation, Dr. Carlton Fredericks. At the time it was published in 1977, (Grosset & Dunlap), the incidence of breast cancer was one in 15, a huge increase over the previous decades, but only half what it is today, in 2006 (one in seven).
Since I had many other books on the ?diet connection,? most of which considered fat to be the chief culprit in the initiation and promotion of breast cancer, I almost discarded this book. However, as I started reading it, Dr. Fredericks echoed many of my own frustrations, doubts, and outrage over the failure of modern medicine to prevent or cure this disease. This book spoke to me. As I continued, I discovered that Dr. Fredericks? theories were considerably different from those of the other authors, and for the first time in five years, I found an explanation that could link together all the other factors and theories: genes, environmental toxins, diet, and lifestyle. This book was the result of 30 years of research and consultation with gynecologists, obstetricians, endocrinologists, and scientists, and I will try to explain the basic concepts and elaborate on them.
• The amount of estrogen, produced in a woman?s body, can vary by a factor of five, which means that some women have five times as much estrogen in their bodies as other women.
• Estrogen (estradiol) is capable of causing cancer Estriol, a weak estrogen, is harmless.
• The ratio of estradiol to estriol is vitally important.
• Estradiol is metabolized to estriol in the liver.
• The ability of the liver to metabolize estradiol to estriol depends on the B vitamins, particularly choline and inositol.
• The diet of the majority of women is not adequate to promote optimal liver function, and the metabolism of estrogen.
• Failure to metabolize estrogen, to a harmless form (estriol), allows estradiol to rise to unhealthy levels, resulting in pre-menstrual tension, cystic mastitis, heavy and prolonged periods, fluid retention, endometriosis, menstrual cramps, uterine fibroids, and cancer (uterine, ovarian, and breast).
• In addition to the estrogen produced in a woman?s own body (endogenous estrogen), there is also exogenous estrogen, which comes from other sources:
o birth control pills
o hormones used to fatten animals for slaughter
o hormone replacement therapy
o xenoestrogens (chemicals which mimic estrogen and disrupt hormones).
It should be obvious, by now, that women must cope with estrogen from many sources, in addition to what their own bodies are producing. Considering that many women?s bodies are already producing five times as much as others, it is not difficult to see how their estrogen levels can rise to dangerous heights.
However, there is a liver-centered mechanism in the body that is specific for inactivation of estrogen and, according to Dr. Fredericks, it is clearly diet-dependent. The vitamins found to be responsible for optimal liver function (and estrogen metabolism) are the B-complex vitamins, particularly choline and inositol. Protein is also important, and the diet must contain adequate amounts of fish, meat, fowl, or dairy products in order for the B vitamins to be effective.
B-vitamin deficiency operates both forward and backward, which means that high levels of estrogen not only increase the need for B vitamins, but also deplete the supply. (This effect has been demonstrated in women who take birth control pills. The birth control pill depletes B6, B12, and folic acid.)
*It must be noted here that the level of deficiency to which Dr. Fredericks is referring is not enough to produce deficiency diseases such as Beriberi or Pellagra. However, it is enough to impede the liver?s ability to metabolize, and subsequently excrete, excess estrogen.
What are the reasons for insufficient levels of B vitamins? There are several:
• Over-processing of grains, cereals, and flour. Seventeen nutrients are significantly depleted when white flour is obtained from wheat. Three are restored through ?enrichment,? but they are not the ones required to break down estrogen. To provide the full spectrum of B vitamins, the whole grain must be used. This means stone-ground wheat bread instead of white bread, brown rice instead of white, whole buckwheat, whole rye, whole barley (not pearled), and cornmeal that is not de-germinated. Commonly, the most nutritious parts of grains are used for animal feed, because the role of nutrition in ensuring animal health is widely recognized.
• Stress. Prolonged, severe stress seriously depletes B vitamins.
• Prescription estrogens such as birth control pills and hormone replacement therapy deplete B vitamins.
• Excessive sugar consumption. When this book was written in 1977, Dr. Fredericks stated that the average amount of sugar consumed per person, in a year, was 100lbs. Bear in mind that this was the average amount. Some consumed more; some consumed less. And it has probably increased since the writing of this book. At a cancer seminar I attended in 2000, a doctor estimated sugar consumption to be as high as 150 lbs. per person annually. Most people only think of sugar as that which is present in candy, cake, pies, soda, etc., but in fact, it is added to virtually all of our ?prepared foods,? and many people are not aware that corn syrup, sucrose, glucose, dextrose, and fructose are sugar. Lest you consider honey, brown sugar, or raw sugar to be ?healthier? than cane sugar, they are not. There is no type of sugar that is healthy at the level at which it is consumed in this country. And that is not the worst news: excess sugar, like estrogen, works both forward and backward. It requires large amounts of B vitamins in order to ?burn? it. So, just as estrogen does with the B vitamins, sugar increases the need and depletes the supply.
While the medical establishment has been blaming fatsfor rising cancer rates, the role of sugar has been practically ignored. The fact that our grandmothers used animal fats, profusely, at a time when the incidence of cancer was much lower than it is today, completely escapes them.
However, this does not vindicate fats altogether. The rising use of polyunsaturated fats and partially hydrogenated fats (trans fats), is another story. Polyunsaturated oils and partially hydrogenated fats (margarine, shortening), go through processes which destroy the natural vitamin E that prevents rancidity and, in the case of margarine and shortening, the molecular structure is altered in order to turn them into a solid form. The end result is a fat that is capable of turning rancid in the body and producing free radicals, which damage cells.
In fact, a German scientist, Dr. Johanna Budwig, had linked the increasing use of these chemically altered fats to the rising incidence of cancer. Since they have a longer ?shelf life,? these are the types of fats that are used, most often, in commercial baked goods and breads, and may be difficult to avoid completely. Dr. Fredericks recommends using vitamin E supplements to counteract the bad effects of these fats, and also to limit the amounts.
By now, you have probably checked your multi-vitamin bottle, and are feeling secure because your supplement fulfills the ?minimum daily requirement? of the B vitamins. Well, guess again! The minimum daily requirement is the amount necessary to prevent Pellagra and Beriberi. It is totally inadequate for metabolizing the amount of estrogen that women are exposed to today, from their own bodies, prescriptions, and environmental toxins. These amounts were set many years ago, in our grandmothers? day. Granny did not use birth control pills or HRT. Her foods did not come in plastic containers that are made from a substance that is both estrogenic and mutagenic. In Granny?s day, most people did not smother their lawns with pesticides, herbicides, and fungicides. They did not use cleaning products and air fresheners that contain substances that are either toxic or estrogenic or both.
Today, we are literally drowning in estrogenic chemicals that are frequently mutagenic, as well.If you doubt this, do a search on ?hormone disrupters?or ?xenoestrogens? and you will find decades of studies proving this. The National Institute of Environmental Health Sciences, part of the National Institutes of Health, is a good place to start. In fact, NIEHS is sponsoring studies at four major cancer research hospitals on the effects of these hormone disrupters on girls at puberty. Coincidentally, one of the effects seen in wildlife and laboratory animals upon exposure to these chemicals, is early puberty, and it is no secret that girls are menstruating at younger and younger ages. Early puberty (before the age of 12) is one of the risk factors for breast cancer.
By now, you are probably asking, ?How much B-complex does Dr. Fredericks recommend?? Well, first let me say that he does not consider vitamin pills to be a substitute for eating a nutritious diet (lots of whole grains, and minimal sugar or anything that is easily converted to sugar (simple carbohydrates). His vitamin regimen is meant to supplement a healthy diet, not to take its place. There are many substances present in foods that cannot be duplicated in a pill.
Since it will be impossible to achieve the optimal levels of choline and inositol in a single B-complex formula, he recommends choosing a supplement that fulfills the lower doses, then buying extra choline and inositol. These are recommended dosages of the most essential vitamins in the complex:
• 200-400 mcg. Folic acid (no more)
• up to 30 mg. PABA (no more)
• at least 25 mg. B-6 (no more than 50 mg.)
• 500 mg. Inositol
• 1,000 mg. Choline*
Dr. Fredericks mentions choline chloride or dihydrogen citrate, but I have not come across those formulations. Much of the available choline is from lecithin, which is obtained from soy, and may contain phytoestrogens. I use choline bitartrate, which does not come from soy.
From my own experience, I have found this regimen to be effective in the metabolism of estrogen. As I was nearing the end of my five years of Tamoxifen therapy, I made an appointment at the Center For Integrative Medicine, at a prestigious university hospital, to get advice on whether to take DIM (diindolylmethane) or I-3C (indole-3 carbinol), two supplements promoted for metabolizing estrogen. However, since I was already taking a low-dose B- complex formula, I only had to add extra choline and inositol, and I did this about one month prior to my appointment.
When I saw the doctor, he informed me that it was customary to do a urine test before prescribing one of these supplements. This was done in order to set the initial dosage, then the test would be repeated after a period of time, and an adjustment would be made. He was quite certain that my estrogen ratio would not be favorable. He said that it is very rare for a post-menopausal woman to have a good estrogen ratio.
I was given the urine collection kit plus detailed instructions for collecting, freezing, and shipping the urine to the lab. A couple of weeks later, I was shocked to find that my estrogen ratio was excellent. In fact, the good estrogen was 4.35 times the amount of the dangerous estrogen!
To my mind, this proved Dr. Fredericks? theory. However, it must be mentioned that I had also made dietary changes since my cancer diagnosis in 1999, and I also exercised daily.
As I mentioned in the beginning of this article, I consider Dr. Fredericks? theory to be the real diet connection, and sugar to be a bigger culprit than fat, for the following reasons:
• Sugar can act as fuel for cancer in any body site.
• In addition to depleting the B vitamins, compromising the liver?s ability to metabolize estrogen, excess sugar also over-burdens the pancreas, resulting in diabetes or borderline diabetes. Since elevated levels of blood sugar can be used as fuel, sugar is a cancer-promoter.
• Sugar (glucose) is an all-purpose fuel. It is capable of promoting even cancers that were originally hormone-dependent. After several years of estrogen-deprivation through Tamoxifen or aromatase inhibitors, it is quite common for a cancer to mutate from hormone-dependent (estrogen-positive) to hormone-independent (estrogen-negative) in order to escape the effects of the drugs, and ensure its survival. At this point, the cancer will start using glucose. This can be clearly shown on a PET scan. This scan measures glucose activity in the cells. Since cancer uses large amounts of glucose, there will be increased glucose activity in the tumor sites.
In my opinion, the sugar theory also sheds light on one of the most puzzling questions of all: Why is it that the majority of breast cancer cases occur among post-menopausal women if estrogen is a major factor, and the ovaries produce 90% of the estrogen? I see a number of possible explanations:
The majority of women gain weight as they get older*, and fat cells retain the estrogen that was produced by the ovaries. The fat cells are also instrumental in the conversion of androgen, a male hormone, into estrogen. Androgen continues to be produced by the adrenal glands, even after menopause.
*As mentioned previously, the Nurses? Health Study did find a correlation between obesity and a higher incidence of breast cancer, even though they found no greater incidence related to the consumption of fat.
• Weight gain raises the glucose levels in the body, as well as levels of insulin-like growth factor. Growth factors stimulate cell division.
• The immune system declines with age. However, it must be mentioned that sugar is capable of depressing the immune system. This effect can be seen in diabetics, who have a greater susceptibility to infection and cancer.
• The ability to absorb vitamins, including the B vitamins, declines with age. Many doctors are now advising older patients to take supplements in addition to improving their diets.
• Older women have had more years of exposure to environmental toxins, many of which are both estrogenic and mutagenic. In addition, they have undergone more medical tests involving radiation. Radiation is mutagenic.
• Older women have experienced more years of stress. Some studies have shown stressful life events, to be a factor in cancer development, regardless of the person?s perception of the event.
• Many people develop elevated cholesterol levels with age. Cholesterol is instrumental in estrogen production.
• Many women become sedentary with age. Exercise is critical both in the metabolization of estrogen, and also in burning glucose, thereby lowering the levels available for fueling cancer.
• After menopause, progesterone is no longer present. The estrogen is unopposed, and if the ratio of estradiol to estriol is not favorable, cancer can be initiated and promoted.
It is possible that breast cancers in older women are so slow-growing that they would not have resulted in death (or symptoms), and that prior to the routine use of mammography, these cancers went undiagnosed and were not counted.
In addition to presenting Dr.Fredericks? theories, I have tried to relate information from many other sources, and also my own experience with the B vitamins. It is clear to me that there are many possible factors in the development of cancer.
Dr.Fredericks himself admits that it takes more than one insult to the body to cause cancer. Cancer requires a hospitable host. I have heard that statement many times, both from conventional and alternative medical sources.
While changing one?s diet or initiating an exercise program does not guarantee that one will not develop cancer, I believe that it creates a less favorable environment for cancer to develop, and when cancer is already present, it provides less fuel for its growth.
Considering the vast amounts of carcinogens and cell-damaging events that our bodies are subjected to from the moment of birth, it makes sense to eliminate as many hazards as we can. There are many things over which have no direct control, but we must control the things we can. Diet, exercise, and weight control are things that fall into that category, as well as the use of toxic chemicals inside and outside of our homes.
~ Mary Mutarelli is a Bucks County sculptor who was diagnosed with breast cancer in 1999, at the age of 53. Although she is currently disease-free, she continues to search for the answers that the medical community could not provide; not only for her own case, but for the virtual epidemic that has arisen over the course of a few generations, and shows no signs of abating.
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Great info above (except for josephmoore's post which I did not see), but the other BIG thing I would add is: Unless you're hyperthyroid, TAKE IODINE!!!! The U.S. RDA is not nearly enough (it's only adequate to prevent goiter). Look into either Iodoral or Lugol's (both great brands... if you do a search on them here you'll find a ton of great info). There are some good studies on pubmed.com and other reputable sites that show how ADH and fibrocystic disease can be reversed (and it follows that DCIS and invasive breast cancer likely to be prevented) with high levels of iodine supplementation.
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It's usually recommended that women over 40 have annual mammograms to detect the presence of a tumor. However, those at an increased risk life yourself may be advised by their doctors to start their mammograms earlier. Breast cancer treatment has a good chance of working if it's detected early and routine examination are the only way to achieve that. Unfortunately, it's not possible to control genetic risk factors of breast cancer. You need to be vigilant and proactive about your mammograms and physical examination.
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helenmoore, may I ask why your post includes a link to the Dana Farber website? Nothing wrong with that - lots of us include links to other websites in our posts, but usually we are open about it and explain why we are including the link (as in, "here's a link to a website that provides good information about the problem you've described...."). In your post, the link is discretely hidden in the middle of your text.... when that happens, it usually means that someone is here solely to drive people to their own website, in other words, it's SPAM. Since you just joined the board today and this is your first and only post, I'll assume that this was not intentional spam. Instead I will that you be more open about posting links in the future, to avoid the impression that it may be spam.
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As I am redesigning my www.blueprintfinder.com and got to get a good reference and tutorials from a community, I came across to your site and I am a woman of my early 20's thus I could say to prevent from having breast cancer, you have to do a good exercise, annual or monthly checkup to your physician, and be aware of how to prevent breast cancer in a basic way. Remember, prevention is better than cure.
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While of course I support good exercise, checkups from your physician, and all the other good measures that deal with your health such as a good diet, we still don't know a lot about the risk factors for breast cancer. We can't do very much about aging or being a woman. I've read articles that opine that 70% of the women who get breast cancer have no obvious risk factors (besides being a woman).
There are certainly plenty of posters here who say they ate right, exercised, controlled their weight, had checkups, maintained a very healthy lifestyle, yet still got breast cancer.
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i agree with leaf lotsa stuff that we can do be women in the prime of health AND THEN kaboom breast cancer (or any cancer for that matter) have their own agenda. not one we are privy to. i do&have all ther right things to do/be/eat snid and dance for that matter and VOILA! to me that is proof that a person should always have the best health they can create. the rest is up to seredipidy sometimes, life just happens.
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There are lot of Nursing Education about the awareness of breast cancer and prevention and as student, whe should take care ourself.
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