Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Treating estrogen responsive cancer naturally

1727375777886

Comments

  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Gardengypsy, yep, exercise has solid evidence behind it. It also helps to maintain bone health. Win-win! Not to mention the psychological benefits. Walking is like meditation for me. Given my DX, I do both, i.e. AI and exercise. I also lost about 25 pounds during treatment (by changing my diet and making exercise a priority), and I have kept it off since. At one point my onc complained that I was too skinny. I asked if he would rather have me a few pounds underweight (BMI is about 18.5)or have me overweight. He never complained again :D

  • Raque510
    Raque510 Member Posts: 15
    edited October 2017

    Hello All.

    Glad to have found this thread. I'm pouring my drop into the bucket!

    After several weeks of weighing the decision, today I told my oncologist that I didn't want to proceed with AI (Aromasin) & OS (Lupron)--I haven't started. He has been borderline ambivalent about whether this treatment is 100% appropriate for me since I was just barely 5% ER+ (PR-/HER2-), and he knows the side effects can be extreme. But, he's already suggested Tamoxifen instead. And my answer is likely going to be the same. I spent hours this past weekend trying to dig up research on low ER positivity & hormone therapy. I found plenty of contradictory studies. Why is everything BC such a crap shoot?

    I'm 36, still in "chemopasue." There's no premenopausal BC in my family. There IS postmenopausal BC. I feel like I'm crazy declining treatments. But it feels crazier to shut down my ovaries and block all estrogen at this age too. It feels like inviting a host of other problems.

    I'm losing weight, walking, and doing yoga. I plan to join a gym or crossfit class once my stamina is back up a bit. My diet is better than it has been in years, and is still improving. I half-heartedly quit smoking when all this started (not a heavy smoker), but it's been about a month since I have even had a drag (I really thought I'd never fully quit, but now I'm thinking of it as a challenge). I was also a heavy drinker before BC and now I can't even stomach more than a glass of wine. My DIM & I3C is in the mail.

    I guess I am still questioning this decision--though I am settled on it. How can I possibly be qualified to make this decision without an M.D.? Why wouldn't I want to through the entire arsenal at this disease? Shouldn't I try it out and see if I tolerate it ok? I could go on. . . I know I'm going to hear it from friends and family.

    Again, I am glad to have found this little respite from all the doubt. I hope to be reassuring people after 5 years (NED), and beyond.




  • scaredashell07
    scaredashell07 Member Posts: 143
    edited October 2017

    two questions

    1. why doesn't excersise work as a way to lower risk of reoccurrence? And does it also lower risk of metastatic disease? If you're already at a healthy weight, does it make the same improvement

    2. What foods lower estrogen? I already hadovaries removed and now wondering how else to lower estrogen. Thanks

  • brutersmom
    brutersmom Member Posts: 969
    edited October 2017

    Today I went to the gym. I decided to sign up for a 21 day challenge. I felt like I needed to move my exercise program to the next level. This is step one. My weight was down another 2 pounds this month. Everything else stayed the same.

  • brutersmom
    brutersmom Member Posts: 969
    edited October 2017

    Today I went to the gym. I decided to sign up for a 21 day challenge. I felt like I needed to move my exercise program to the next level. This is step one. My weight was down another 2 pounds this month. Everything else stayed the same.

  • dtad
    dtad Member Posts: 771
    edited October 2017

    hi everyone...to start, weight loss and exercise has been shown to lower recurrence rates by 40 percent. Anti hormones by 50 percent. So the best case scenario would be to take anti hormone treatment, lose weight and exercise regularly. However the problem is that losing weight and exercising while taking anti hormones is very difficult for many. In fact most gain weight on it. So my question is if you gain weight and can't exercise while on it, doesn't that negate its effectiveness and how much? IMO this has never been studied. Food for thought. Good luck to all.

  • yoga_girl
    yoga_girl Member Posts: 80
    edited October 2017

    DIM (Di-Indoly Methane) For Natural Protection
    from Estrogen's Effects

    Compiled by Thomas Stearns Lee, NMD

    What do perimenopause, premenstrual syndrome, enlarged prostate glands, and early heart attacks have in common?

    Products available on line to reference:

    https://www.bing.com/search?q=dim+products&form=IENTHT&mkt=en-us&httpsmsn=1&refig=d8aafb4b17c04463beb6b855ffe57e36&sp=-1&pq=dim+products&sc=8-12&qs=n&sk=&cvid=d8aafb4b17c04463beb6b855ffe57e36Estrogen.

    A new understanding of healthy estrogen metabolism is providing a natural treatments for these and other important conditions confronting both women and men.

    Fortunately, phytonutrients discovered in cruciferous vegetables offer a natural approach to resolving estrogen imbalance. Dietary supplementation with an absorbable form of one of these phytonutrients, called Di-Indoly Methane (DIM), helps promote healthier estrogen metabolism. DIM's hormonal balancing effects have revealed these midlife problems are not due to estrogen itself alone, but rather, to estrogen metabolism imbalances.

    Q. What is DIM, and how can it help hormones?

    A. DIM is a phytonutrient (plant nutrient) found in cruciferous vegetables. These include cabbage, broccoli, bok choy, Brussels sprouts, cauliflower, kale, kohlrabi, mustard, rutabaga, and turnip. These plants have been cultivated for thousands of years and were initially used for their medicinal benefits. The connection between DIM and hormones like estrogen has to do with similar characteristics between them at the molecular level. DIM is not an estrogen or a hormone, but like estrogen it shares the common characteristic of being poorly soluble in water. Like estrogen, DIM can be metabolized only by a special class of cytochrome enzymes that reside in cell membranes in the non-water part of cells. It turns out that DIM, when consumed in food or in absorbable formulations, encourages its own metabolism. This special metabolic pathway for DIM, and the enzymes involved, precisely overlap with the pathway needed for healthy estrogen metabolism.

    Stated simply, supplementing the diet with DIM specifically promotes beneficial estrogen metabolism and helps restore a healthy hormonal balance.

    Q. What is estrogen dominance?

    A. Middle-aged men and women experience changes in hormone production and metabolism resulting in excess estrogen action. There are three basic forms of this common imbalance known as estrogen dominance.

    Perimenopause. In women, slower hormone metabolism in midlife can mean higher-than-normal levels of estrogen and a deficiency in its healthy metabolites. Faltering estrogen metabolism often occurs in women during perimenopause, the years before menopause, and is characterized by higher monthly estrogen levels prior to estrogen's dramatic fall at menopause.(2) Additionally, progesterone levels fall during perimenopause, resulting in a rising estrogen-to-progesterone ratio.

    Middle-aged men. Rising estrogen also becomes a problem for men during their 50s and 60s. In overweight men, testosterone is increasingly converted into estrogen by aromatase and rising estrogen also competes with falling testosterone. This corresponds to a time during which estrogen accumulates in the prostate gland. Estrogen is believed to contribute to benign prostatic hypertrophy (BPH).(3)

    Acquired estrogen imbalance. This important form of estrogen dominance has to do with inherited problems in estrogen metabolism and influences of diet and chemicals on beneficial metabolite production. Acquired estrogen imbalance affects both men and women. Almost 20 years ago, H. Leon Bradlow, Ph.D., a renowned breast cancer investigator, discovered women with breast and uterine cancer made too little of the 2-hydroxy or "good" metabolite of estrogen and too much of the 16-hydroxy or "bad" variety.(4)

    Since 16-hydroxy is an unregulated form of estrogen prone to behave like "super-estrogen," higher levels create a particularly unhealthy form of estrogen dominance. 16-hydroxy estrogens can result in mutations, abnormal growth (as in cervical dysplasia),(5) and an increased risk of future breast cancer.(6) Overproduction of 16hydroxy estrogen is also seen in obesity,(7) high-fat diets,(8) and exposure to a host of "estrogenic" environmental chemicals.(9) Therefore, this dangerous form of estrogen dominance can result from inheritance, diet, and environmental chemicals.

    Q. What benefits can DIM offer?

    A. Supplementing our diets with DIM can shift the production of estrogen metabolites away from dangerous 16-hydroxy in favor of beneficial 2-hydroxy metabolites. Taking DIM in an absorbable formulation encourages active and healthy estrogen metabolism. DIM supports estrogen balance by increasing beneficial 2-hydroxy estrogens and reducing the unwanted 16-hydroxy variety. This improves estrogen metabolism and helps resolve all three forms of estrogen dominance.

    NaturoDoc Note: Remember, 2-hydroxy is good; 16-hydroxy is bad.

    Q. Why not just eat more cruciferous vegetables?

    A. Recent reports, like one from the Fred Hutchison Cancer Center in Seattle, Washington indicate a higher intake of cruciferous vegetables is associated with a lower risk of prostate cancer.

    This study indicates cruciferous vegetables are protective for hormone-sensitive cancers. However, direct measurements of upward, beneficial shifts in estrogen metabolism indicate you would have to eat at least two pounds per day of raw or lightly cooked cruciferous vegetables to derive the same benefit as two capsules of specially formulated DIM. Benefits for cervical dysplasia, PMS, BPH, and other conditions have not been seen with the use of broccoli, cabbage juice, or dried powders or extracts from vegetables.

    Absorbable DIM formulations overcome the need for active enzymes within the vegetable and chemical reactions in your stomach to produce DIM. For similar reasons, absorbable DIM provides many advantages over indole-3carbinol (I3C), another cruciferous phytochemical available as a supplement. I3C is an unstable precursor that requires activation in the stomach to be converted into DIM. This means I3C must be taken at a much higher dose and can undergo unpredictable and undesirable chemical reactions in your stomach and colon. DIM, in a delivery system to assure absorption, is by far preferable to the supplemental use of I3C.

    Q. How much DIM is recommended?

    A. To replace optimal amounts of DIM in Cabbage family vegetables, women should take a starting dose of about 15 mg per day, and men should start with 30 mg per day of actual DIM. These amounts can be increased four or more times on an individual basis to obtain beneficial effects upon liver metabolism. Clinical studies have shown that men experience improved estrogen metabolism, easier weight loss, and improved prostate health from approximately twice the doses of DIM that work with women.

    Because these suggested dosage ranges are so unique for each person and their digestive and hormonal systems, the label-recommended dosage ranges are to be worked up to gradually over a period of several days at each level. In other words, use 25% of normal for a few days, then 50%, and so on. Any signs of digestive discomfort would suggest no further increase, and a possible backtrack to previous amounts would be indicated. This extract is very safe and effective, but concentrated medicines should be used carefully, regardless whether they are pharmaceuticals or botanicals.

    Q. What's exciting about the effect of DIM on premenstrual syndrome (PMS)?

    A. PMS symptoms of irritability, aggression, tension, depression, mood swings, water retention, and breast pain or swelling are frequently seen in perimenopausal women.(16) While a reduction in PMS severity has been seen with nutritional therapy, full resolution has been elusive. These interventions have included lower-fat diets,(17) and supplementation with minerals, Vitamin D,(18) and herbal extracts.(19)

    PMS symptom improvement has been noted after beginning dietary supplementation with absorbable DIM. These results suggest DIM is able to correct the estrogen imbalance in PMS. Torbjorn Backstrom, M.D., an eminent researcher in the field (20), and others (21) have documented that estradiol, the primary active form of estrogen, is elevated in PMS. Backstrom also has shown the degree of estradiol elevation correlates with symptom severity.(22)

    Also encouraging is the observation that the enzyme pathways promoted by DIM help metabolize pregnenolone sulfate.(23) Pregnenolone sulfate is a brain hormone important for memory, but which causes anxiety if levels are too high. Like estrogen, pregnenolone sulfate is elevated in PMS.(24) Its healthy metabolism produces beneficial, immune stimulating metabolites and may help relieve anxiety. Absorbable DIM supplementation promotes healthier metabolism of both estrogen and pregnenolone in PMS.

    Q. What's the best supplementation approach to PMS?

    A. A strong nutritional approach to PMS includes bio-available DIM, chaste berry extract, Vitamin D, calcium, and magnesium. Synergistic interaction of these ingredients benefits PMS. An example of this synergy is the ability of beneficial 2-hydroxy estrogens to increase progesterone production (25), potentiating this effect by chasteberry extract.(26) This new nutritional approach to PMS helps with mineral and hormonal balance. DIM works in conjunction with chasteberry extract to resolve the dominance of estrogen over progesterone.

    Q. How can helping estrogen metabolism benefit men?

    A. Everyone knows estrogen is an important hormone for reproduction in women. What is not often appreciated is that estrogen levels, though lower than those in women, are also essential in men. However, midlife changes in men result in excess estrogen production beyond its minimal essential level.

    Like perimenopausal women, men experience a tendency to gain weight in midlife. Rising estrogen production can result, since fat cells contain the aromatase enzyme that converts testosterone into estrogen. Unmetabolized estrogen creates a vicious cycle resulting in further estrogen production. This occurs because fat is one source of more active aromatase enzymes, causing further estrogen production and continuing weight gain.(27) An open label study of DIM in overweight men and women showed it promoted more efficient weight loss and more active fat metabolism.

    In this regard, DIM is similar to green tea extract (28) and spices like cayenne pepper.(29) DiindolyImethane may have a role in helping to intervene with excess estrogen production associated with obesity and male aging. Besides weight gain, another aspect of early aging in men is prostate gland enlargement.

    It has been clearly established that estrogen accumulates in aging prostate glands at the same time enlargement occurs.(30) This process is linked to difficulty with urination and frequent urination at night. The role of estrogen is still being established in this process, but research using estrogen binding substances shows lowering estrogen levels improves the symptoms of nighttime urination.(31) Use of absorbable DIM by men with these same symptoms has proven beneficial.

    Q. Can DIM help improve the safety of hormone replacement therapy (HRT)?

    A. Despite a growing list of benefits attributed to estrogen, which include younger-looking skin, more comfortable sex, and better memory, women often view its potential side effects as unacceptable. Study of postmenopausal women receiving long-term HRT with estrogen and estrogen/progesterone combinations has revealed an unequivocal increase in breast cancer risk.(32)

    NaturoDoc Note: These studies were done with Premarin, horse estrogens, and synthetic progestins, NOT progesterone.

    Added concerns relate to the increase in the incidence of uterine cancer, and increased risk of life-threatening blood clots, especially after bone fracture.(33) Most recently, the nationwide HERS study reported the concerning finding that women with a history of heart disease had an increased risk of heart attack in the first year after starting estrogen.(34)

    Many of estrogen's risks can be related to a lack of its beneficial metabolites. It is now known that a lower risk of future breast cancer is associated with higher 2-hydroxy estrogen levels. Supplementation with bioavailable DIM increases protective 2-hydroxy estrogen and therefore may reduce the risk of HRT-related cancer. Reduction in the risk of abnormal blood clot formation related to HRT estrogen would benefit women who suffer fractures while on HRT, but also may benefit women with early heart disease. It has been known since the Framingham Study in Massachusetts that men with the highest estradiol level had the highest risk of early heart attack.(35) DIM may help normalize the cardiac risk in both men and women related to unhealthy or underactive estrogen metabolism. Also, the beneficial 2-hydroxy metabolites have been shown to be powerful antioxidants,(36) which may contribute to protecting against the early stages of atherosclerosis and subsequent heart attacks.

    Conclusion

    DIM supplementation is a nutritional approach to achieving a safer and healthier estrogen metabolism, or of protecting it. Many of the benefits traditionally ascribed to estrogen (protection from heart disease, healthy skin, bones, and brain) may actually reside with its beneficial metabolites, the 2-hydroxy estrogens. DIM supplementation is a natural promoter of this specific pathway of healthy estrogen metabolism.


    To jump to our recommendations for alternative treatments to achieve safe, natural hormone balancing, click here.

    References

    1. Zeligs MA. Diet and estrogen status: the cruciferous connection. J Med Food, 1998; 1:67-82.
    2. Santoro N. Characteristic of reproductive hormonal dynamics in the perimenopause. J Clin Endocrinol Metab. 1996; 81: 1495-1501.
    3. Farnsworth WE. Estrogen in the etiopathogenesis of BPH. Prostate, 1999, 41:263-74.
    4. Fishman J, Schneider J, Hershcope RJ, Bradlow HL. Increased estrogen 16hydroxylase activity in women with breast and endometrial cancer. J Steroid Biochem. 1984; 20: 1077-1081.
    5. Sepkovic DW, Bradlow HL, Ho G, et al. Estrogen metabolite ratios and risk assessment of hormone related cancers: assay validation and prediction of cervical cancer risk. Ann NY Acad Sci. 1995; 768:312-316.
    6. Muti P, et al. Metabolism and risk of breast cancer: A prospective analysis of 2:16 hydroxyestrone ratio in premenopausal and postmenopausal women. Cancer Epidemiol Biomarkers Prev, 2000; in press.
    7. Hershcope RJ, Bradlow HL. Obesity, diet, endogenous estrogens, and the risk of hormone-sensitive cancer. Am J Clin Nutl: 1987;45(1 Supp1):283-289.
    8. Musey PI, Collins DC, Bradlow HL, Gould KG, Preedy JR. Effect of diet on oxidation of 17-Beta-estradiol in vivo. J Clin Endoc Metab. 1987;65:792-795.
    9. Bradlow HL, Davis DL, Lin G, Sepkovic D, Tiwari R. Effects of pesticides on the ratio of 16/2-hydroxyestrone' a biologic marker of breast cancer risk. Environ Health Perspect. 1995; 103(SuppI7): 147-150.
    10. Cohen JH, Krista1 AR, Stanford JL. Fruit and vegetable intakes and prostate cancer risk. J Natl Cancer Inst. 2000; 92: 61-68.
    11. Jacobs IC, Zeligs MA. Facilitated absorption of a hydrophobic dietary ingredient. Proceed Int'l Symp Control Rei Bioact Matel: Controlled Release, Society, Inc., 1998; 26: 958-959.
    12. Chen I, McDougal A, Wang F, Safe S. Aryl hydrocarbon receptor-mediated antiestrogenic and antitumorigenic activity of DIM (DIM). Carcinogenesis, 1998; 19:1631-1639.
    13. Jin L, Qi M, Chen DZ, et al. Indole-3-carbinol prevents cervical cancer in human papilloma virus type 16 (HPV16) transgenic mice. Cancer Res. 1999; 59: 3991-3997.
    14. Baker B. Pilot study: cruciferous veggies may induce cervical dysplasia regression. Db Gyn News. 1999; 15:13.
    15. Zeligs MA, Connelly AS. All About DIM. New York, NY: Avery; 2000; 75-76.
    16. O'Brien PM, Wyatt K, Dimmock P. Premenstrual syndrome is real and treatable. Practicionel: 2000; 244:185-195.
    17. Barnard ND, Scialli AR, Hurlock D, Bertron P. Diet and sex-hormone binding globulin, dysmenorrhea, and premenstrual symptoms. Dbstet Gynecol. 2000; 95 :245-250.
    18. Thys-Jacobs S. Micronutrients and the premenstrual syndrome: the case for calcium. JAm Coli Nutl: 2000; 19: 220-227.
    19. Loch EG, Selle H, Boblitz N. Treatment of premenstrual syndrome with a phytopharmaceutical formulation containing Vitex agnus castus. J Womens Health Gend Based Med. 2000; 9: 315-320.
    20. Hammarback S, Damber JE, Backstrom T. Relationship between symptom severity and hormone changes in women with premenstrual syndrome. J Clin Endocrinol Metab. 1989; 68: 125-130.
    21. Redei E., Daily plasma estradiol and progesterone levels over the menstrual cycle and their relation to premenstrual symptoms. Psychoneuroendocrinology. 1995; 20: 259-267.
    22. Seippel L, Backstrom T. Luteal-phase estradiol relates to symptom severity in patients with premenstrual syndrome. J Clin Endocrinol Metab. 1998; 83: 1988-1992.
    23. Doostzadeh J. Pregnenolone-7beta-hydroxylating activity of human cytochrome P450-1A1. J Steroid Biochem Molec Bioi. 1997; 60: 147-152.
    24. Wang M, Seippel L, Purdy RH, Backstrom T. Relationship between symptom severity and steroid variation in women with premenstrual syndrome: study on serum pregnenolone, pregnenolone sulfate, 5 alpha-pregnane-3, 20-dione and 3 alpha-hydroxy-5 alpha-pregnan-20-one. J Clin Endocrinol Metab. 1996; 81: 1076-1082.
    25. Spicer LJ, Kao LC, Strauss JF 3d, Hammond JM. 2-hydroxyestradiol enhanced progesterone production by porcine granulosa cells: dependence on de novo cholesterol synthesis and stimulation of cholesterol side-chain cleavage activity and cytochrome P450scc messenger ribonucleic acid levels. Endocrinology. 1990; 127: 2763-2770.
    26. Milewicz A., Gejde1 E, Sworen H, et al. Vitex agnus castus extract in the treatment of luteal phase defects due to latent hyperprolactinemia. Results of a randomized placebo-controlled double-blind study. Arzneimittelforschung 1993; 43: 752-756.
    27. Purohit A, Singh A, Ghi1chik MW, Reed MJ. Inhibition of tumor necrosis factor alpha-stimulated aromatase activity by microtubule-stabilizing agents, pac1itaxel and 2-methoxyestradiol. Biochem Biophys Res Commun. 1999; 261: 214-217.
    28. Dulloo AG, Duret C, Rohrer D, et a1. Efficacy of a green tea extract rich in catechin polyphenols and caffeine in increasing 24-h energy expenditure and fat oxidation in humans. Am J Clin Nutl: 1999; 70:1040-1045.
    29. Yoshioka M, St-Pierre S, Suzuki M, Tremblay A. Effects of red pepper added to high-fat and high-carbohydrate meals on energy metabolism and substrate utilization in Japanese women. Br J Nutl: 1998; 80: 503-510.
    30. Krieg M, Nass R, Tunn S. Effect of aging on endogenous level of 5 alphadihydrotestosterone, testosterone, estradiol, and estrone in epithelium and stroma of normal and hyperplastic human prostate. J Clin Endocrinol Metab. 1993; 77: 375-381.
    31. Boehm S, Nirnberger G, Ferrari P. Estrogen suppression as a pharmacotherapeutic strategy in the medical treatment of benign prostatic hyperplasia: Evidence for its efficacy from studies with mepartricin. Wien Klin Wochenschl: 1998; 110: 817-823.
    32. Schairer C, Lubin J, Troisi R, Sturgeon S, Brinton L, Hoover R. Menopausal estrogen and estrogen-progestin replacement therapy and breast cancer risk. JAMA, 2000; 283: 485-491.
    33. Grady D, Wenger NK, Herrington D, et al. Postmenopausal hormone therapy increases risk for venous thromboembolic disease. The heart and estrogen/progestin replacement study. Ann Intern Med. 2000; 132: 689-696.
    34. Wenger NK, Knatterud GL, Canner PL. Early risks of hormone therapy in patients with coronary heart disease. JAMA, 2000; 284: 41-43.
    35. Philips GB, et al. Association of hyperestrogenemia and coronary heart disease in men in the Framingham cohort. Am J Med. 1983; 74: 863-869.

    Seeger H, Mueck AO, Lippert TH. Effect of estradiol metabolites on the susceptibility of low-density lipoprotein to oxidation. Life Sciences, 1997; 61: 865-868.


  • Raque510
    Raque510 Member Posts: 15
    edited October 2017

    Has anyone come across empirical research on hormonal therapy in PREmenopausal women? I've only found a handful of recently published studies that separate or only focus on one of the main factors in BC diagnosis. I am premenopausal (36), weakly ER+, stage IIIA, grade 3 tumor. My family has a history of heart problems, and postmenopausal cancers in women, and precancerous growths after 50. So, my feeling is that pharmaceutically reducing or eliminating all estrogen in my body will NOT be beneficial to my overall health. From what I have read, women with my diagnosis (age/premenopausal, ER-only involvement, and aggressive tumor) have a higher risk of recurrence and lower OS rates. Hormone therapy seems to be part of the arsenal because doctors don't have other research-backed tools for us. But the absence of estrogen is problematic for all women, and using this therapy as the standard of care, to me, seems negligent.

    Another day, another BC rant. Le sigh.

    On a positive note, I dragged my tuchus out of bed early today and got in a good yoga workout and guided meditation, and I feel great. I am 3.5 mo's PFC, and two weeks PFR. The hair is growing back in thick now. Nails are recovering well. Chemo-fog lifts a little every day.

  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Dtad, I have wondered about that too. I am one of the lucky ones, in that the AI hasn't affected my weight. If anything it is much easier for me to maintain a low and steady weight without all that estrogen. Most women get stocky after menopause, but you also get some women who shrink into scrawny old ladies. Apparently I am one of the latter :D. I do have some joint pain in my feet, but moving makes it better, so I just work through it. I have had trouble with my back and joints all my life pretty much (bad back pain on and off since I was 10, and recurring "runner's knee") and perhaps that makes me more tolerant of the joint SEs of the AI. Because I have made exercise a priority since my DX, my back has actually bothered me much less, so on balance, I am better off now in spite of the AI.

    It again boils down to more research being needed, a recurring theme. Which is also why all the awareness campaigns make me crazy. Use the money for research instead.

  • dtad
    dtad Member Posts: 771
    edited October 2017

    Momine....I so agree about research vs awareness. Who is not aware of BC? Congratulations on losing weight while on an Al. IMO that is the best case scenario to reduce recurrence rates. Unfortunately many can not do that. Good luck to all navigating this complicated disease.

  • AngelaJL
    AngelaJL Member Posts: 26
    edited October 2017

    dtad, I was certainly aware of breast cancer, but I was not aware of the fact that someone like me could actually be at risk. In 4 generations of my extended family (50+ people) there has been only one instance of ANY cancer, and that one was not breast cancer. I figured there was no way I'd get it. I even skipped one year's mammogram because I thought it was pointless. Well, clearly I was wrong!

    Of course, I was also aware of some recent research and guidelines suggesting that women like me - with no family history - didn't need to start mammograms until age 50. But because of my GP's insistence, I went for my mammogram in August. Lo and behold, diagnosed at 43. (What would have happened if I'd actually waited until age 50? That's a thought that scares the crap out of me!)

    So there's plenty of awareness out there as far as people being aware that BC exists. But the message of who is at risk, when to start mammograms, etc, is a bit muddied, I think.

  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Angela, fair point. But perhaps that also means that if you are going to awareness campaigns, something a bit more substantial than pink football uniforms and ribbons everywhere might be in order.

  • Therealsvveetgirl123
    Therealsvveetgirl123 Member Posts: 3
    edited October 2017

    Hi ChiSandy, I was curious about something n if u could possibly help me or direct me on the right direction, but if your tumor marker is only 14, what does that mean n do u have to have chemotherapy.

    Thank you


  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    dtad, do you get mammos or scans to check your NED status?

  • dtad
    dtad Member Posts: 771
    edited October 2017

    marijen...No scans, no mammograms because I had a BMX. Also no blood work. My docs at a major NYC university hospital tell me this is the current protocol for stage 1 BC. They tell me if I have new symptoms of any kind lasting more than 2 weeks to report. So basically you don't know if you have a recurrence until you are stage 4! Alarming to me to say the least.

  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Dtad, it IS alarming, but also just reality. I had several discussions with my doc about this. As a patient it is hard not to think that early detection of mets would make a difference. In some cases it might, but my doc's dry comment at one point was that if you catch it earlier, it just means that you spend that much longer in treatment for it.

    That said, he does do a full blood panel, including tumor markers for each visit, as well as a chest X-ray and a liver U/S once a year. All these are fairly cheap and minimally invasive tests.

  • brutersmom
    brutersmom Member Posts: 969
    edited October 2017

    Dtad You are so right. Stage I gets little or no followup. When I was diagnosed they immediately said chemo. I said why and they said just in case. That was even before the surgery. No test or anything. I opted out of chemo after a second opinion. When I started reacting to the Anastrazoles and the side effects became unbareable, the MO told me that if I didn't take the drug then there was no reason to see him any longer. The surgeon was a little different. He suggested a diet and exercise program to bring my weight down, build muscle and reduce fat to help reduce estrogen. My MD does monitor my blood work every 6 months looking for minor changes. My opinion care is all about the drugs. I am on my own for diet and exercise. It does not seem to be part of the medical community. I get more help from the gym then medicine.

  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    Dtad, I agree with Momine. It’s established that all breast tissue cannot be removed even with a BMX. What kind of crazy is it to allow someone to go to Stage IV. Although my first oncologist said the same thing when I asked about tumor markers. I said how will I know if it has spread? And she replied by the symptoms. So I said well by then it will be too late! It has to be more cost effective to MONITOR rather then let it spread. And I am only getting a mammo after one year.

    In place of an xray or US, a Pet/CT scan would cover all, bones, liver, lungs, right? I think that would be reasonable once a year.


  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Marijen, the problem is that even with much testing, you can't typically catch it before symptoms appear. Lesions have to be a certain size to get picked up on CT and other imaging, for example. Also, once you have mets, it gets to be even more of a crap shot.

    Annual PET/CT is not reasonable, because it is quite a lot of radiation as well as expensive. That is why my doc sticks to less invasive and cheaper tests for regular monitoring.

  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    I have been radiated so much I should glow in the dark! You’re right Momine, what we need is a better form of detection. What kind of tumor markers do you get?

  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    This is a snip from another topic. Apparently a scan can find very small mets.

    *******

    My last scan was in June, and at that time my bone mets had improved and most of my liver mets were not even visible. The one liver met that remained had shrunk down to only 1.1 mm.

    *******


  • marijen
    marijen Member Posts: 2,181
    edited October 2017
  • yoga_girl
    yoga_girl Member Posts: 80
    edited October 2017

    Breast cancer - early stage detection options

    Making an educated treatment decision begins with the stage, or progression, of the disease. Using the results from your diagnostic tests assist with developing an appropriate treatment plan for you are comfortable with.

    Ultrasound

    How does an ultrasound help to diagnose a breast lump?

    When a suspicious site is detected in your breast through a breast self-exam or a medical breast exam, you have the right to request an ultrasound of the breast tissue. A breast ultrasound is a scan that uses penetrating sound waves that do not affect or damage the tissue and cannot be heard by humans. The breast tissue deflects these waves causing echoes, which a computer uses to paint a picture of what's going on inside the breast tissue. A mass filled with liquid shows up differently than a solid mass.

    Ultrasound Results: Breast Sonogram

    Ultrasounds are helpful when a lump is large enough to be easily felt, and the images can be used to further evaluate the abnormality.

    A breast ultrasound can provide evidence about whether the lump is a solid mass, a cyst filled with fluid, or a combination of the two. While cysts are typically not cancerous, a solid lump may be a cancerous tumor. Healthcare professionals also use this diagnostic method to help measure the exact size and location of the lump and get a closer look at the surrounding tissue.

    Stage I breast cancer

    Stage I breast cancer is the earliest stage of invasive breast cancer. At this stage, the cancer cells have spread beyond the original location and into the surrounding breast tissue.

    Because a stage I tumor is small, it may be difficult to detect. Breast self-exams and routine screening are always important and can often lead to early diagnosis, when the cancer is most treatable.

    Types of stage I breast cancer

    Stage I is divided into two categories:

    • Stage IA: The tumor measures 2 cm or smaller (about the size of a pea or shelled peanut), and has not spread outside the breast.
    • Stage IB: Small clusters of cancer cells measuring no more than 2 mm, are found in the lymph nodes, and either there is no tumor inside the breast, or the tumor is small, measuring 2 cm or less.

    The survival rate for stage IA breast cancer may be slightly higher than for stage IB. However, women with stage I breast cancer are considered to have a good prognosis.

    TNM At stage I:

    TNM designations help describe the extent of the disease. For example, there may or may not be cancer cells in the lymph nodes, and the size of the tumor may range from 1 - 2 cm. Most commonly, stage I breast cancer is described as:

    • T: T1, T2, T3 or T4, depending on the size and/or extent of the primary tumor.
    • N0: Usually, cancer has not spread to the lymph nodes
    • M0: The disease has not spread to other sites in the body

    Medical codes used for ultrasound, medical necessity, breast; see link below:

    http://www.icd10data.com/ICD10CM/Codes/N00-N99/N60-N65/N63-/N63

    Check your medical plan for ultrasound coverage and options; pre-authorization requirements. Most PCPs will support this non-invasive testing.

  • Momine
    Momine Member Posts: 2,845
    edited October 2017

    Marijen, they can see the 1.1 MM thing, because they know where to look from previous scans.

    My doc does 3 tumor markers: CEA, CA125 and CA15-3. However, tumor markers are notoriously unreliable, which is why many doctors won't use them.

  • dventi
    dventi Member Posts: 100
    edited October 2017

    dtad - do you purchase Breast Defend on line? Thank you for the information this!

  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    .


  • dtad
    dtad Member Posts: 771
    edited October 2017

    yes I purchased Breast Defend online...

  • coachvicky
    coachvicky Member Posts: 984
    edited October 2017

    Marijen ... you go girl! That is wonderful!

    Coach Vicky


  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited October 2017

    Oooooh! and Ahhhhhh!

    You are soooo victorious, Marijen!

  • marijen
    marijen Member Posts: 2,181
    edited October 2017

    That’s not me!