Wanting to go Alternative, and need help!!

varapappas
varapappas Member Posts: 8
edited June 2016 in Alternative Medicine

My profile on this site is out of date as I think I last updated it pre-surgery. Here is the gist:

Stage 1 ER+/PR+ 70% ER 80%PR Some lymphatic invasion but clear nodes and margins; bilateral mastectomy and mid-recon.

Doctor suggestion: Tamoxifen, and shutting down ovaries. Start with Tamoxifen

Other issues: I have Crohn's Disease and Endometriosis

Situation; Because of Crohn's, my eagerness to be on a primarily fruit/veg based diet has been hindered by chronic diarrhea. I have managed to get this down to once or twice a week, by including white jasmine rice into my diet as often as needed. Not my fav, but it controls diarrhea. I started Tamoxifen, and took it for one week. At first, I noticed no side effects. By day 7 I was in extreme pain and was doubled over for hours; it felt like the worst menstrual pain imaginable. As I have endometriosis, and know the risks of Tamoxifen, I do believe that Tamoxifen would cause me endometrial cancer. I am scared to ever take it again. I had at least one ruptured cyst from the Tamox, and the pain is finally diminishing. As far as shutting down my ovaries as another option; that doesn't seem great either.

I REALLY want to go an all natural route. I did this prior to cancer for my Crohn's, and never needed medications, and was entirely able to heal myself. Granted, all of these changes in my life/diet have interrupted that for now.

PROBLEMS: Everyone tells me if I do this, I will die. I cannot find another survivor who has done this. Everyone I've ever met or talked to with cancer has gone the conventional route. I also am having difficulty finding a reputable doctor or naturpath or person who can really guide me. I have started speaking with Elyn Jacobs in hopes her insight on doctors can help; but it will cost a lot of money for her time.

DIM QUESTION: In addition, I was told by two doctors, one at MD Anderson, and my current oncologist at Methodist that DIM CAUSES breast cancer. I want to know if this is true. The internet is showing me the opposite. Why would two doctors just offer me that info and tell me there's a lot of data on it though? Prior to my diagnosis, 2 years prior, I had tried DIM for a few months. It caused me to urinate constantly. I stopped and switched to Vitex. I noticed improvement in my hormonal issues, but 2 years later had a tumor. The Vitex DID effect my pathology. My first biopsy showed 50% ER and 95% PR. I stopped the Vitex at time of dx, and at the time of surgery, 2 months later, the biopsy showed 70% ER 80% PR

I'm scared, and really want guidance. I am 34. I have never had children. I feel like I've barely started my life; and I don't want to die! Are there all natural survivors? What can I do? Who are reputable natural doctors to help me on my path?


Thanks!

Comments

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    Hi and welcome! First of all, your cancer was a very early stage. Get the doctor to explain exactly what you gain by tamox. Typically the stats say that tamox reduces recurrence ~50%. How much of an advantage this is depends entirely on how great your risk is in the first place.

    In my case, with a stage 3B cancer, taking the pill (AI in my case) reduces my risk of a cancer death by something like 15%.

    In your case, the total risk is nowhere near 15% to start with. According to Cancer Math (online calculator) stage 1, ductal, grade 2, ER+/HER- has a 9% risk of mortality over the next 15 years, with no adjuvant treatment.

    With tamox that drops to 6%, so a real reduction of 3%. Tamox+ovary shutdown yields the same result. Interestingly, ovary shutdown with NO tamox also yields the same result. The thing is that ovary shutdown might greatly help your endo. So, in your shoes, I would try the ovary shutdown by itself.

    Here is a link to the calculator: http://www.lifemath.net/cancer/breastcancer/therapy/

  • chef127
    chef127 Member Posts: 891
    edited May 2016

    Hello varapoppas,

    Why would an onco give you false info on DIM? DIM simply helps you to metabolize and get rid of unhealthy estro via your urine. I find that really irresponsible. There is no research that shows that it causes cancer. Did they tell you that the tamox can cause endo cancer? or thickening of the endo lining which you stated you already suffer from endometriosis.

    The fact that your PR level is higher than ER is BC protective. A good thing.

    Sorry about your Crohn's disease. There is a tx with LDN (low dose Naltrexone) that has shown positive results with Crohn's, putting it in remission, and LDN has shown to stop cancer cells from proliferating. IMO, well worth a try. I take it w/o any se's. It has to be filled at a compounding pharmacy. Research "LDN and Cancer or LDN and Crohns". a no brainer. PM me if you want more info.

    Maureen


  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    I have never heard of or saw a study that indicates that DIM causes breast cancer. Actually just the opposite. I would ask the docs to back that up. Its so hard for us to make decisions and when the docs contradict each other its even worse. Good luck to all of us...

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2016

    From WebMD:

    Diindolylmethane is LIKELY SAFE when consumed in the small amounts found in foods. A typical diet supplies 2-24 mg of diindolylmethane. It is POSSIBLY SAFE for most people when taken by mouth short-term for medicinal purposes. Taking larger doses of diindolylmethane is POSSIBLY UNSAFE. Taking 600 mg of diindolylmethane daily has been reported to lower sodium levels in some people.

    Special Precautions & Warnings:

    Pregnancy and breast-feeding: Diindolylmethane is LIKELY SAFE when consumed in the small amounts found in foods. But don't take larger amounts. Not enough is known about the safety of larger amounts during pregnancy and breast-feeding.

    Children: Diindolylmethane is LIKELY SAFE when consumed in the small amounts found in foods. But don't give children larger amounts. Not enough is known about the safety of larger amounts of Diindolylmethane when given to children.

    Hormone-sensitive conditions such as breast cancer, uterine cancer,ovarian cancer, endometriosis, or uterine fibroids: Diindolylmethane might act like estrogen, so there is some concern that it might make hormone-sensitive conditions worse. These conditions include breast, uterine, andovarian cancer; endometriosis; and uterine fibroids. However, developing research also suggests that diindolylmethane might work against estrogen and could possibly be protective against hormone-dependent cancers. But stay on the safe side. Until more is known, don't use diindolylmethane if you have a hormone-sensitive condition.

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    http://bmccancer.biomedcentral.com/articles/10.118...

    "Conclusions

    We document an unexpected effect of DIM on cell proliferation, which is to stimulate growth by inducing the ERα signaling pathway. Importantly, this proliferative effect of DIM happens with potentially physiological concentrations that can be provided by the diet or by taking caplet supplements."

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    http://link.springer.com/article/10.1007/s10689-01...


    "Abstract

    Hormonal exposures are known to influence breast cancer risk among women with a BRCA1mutation. Thus, dietary factors that increase the 2-hydroxyestrone (OHE):16α-OHE ratio, a biomarker inversely related to breast cancer development, may also influence cancer risk. We conducted a dietary intervention study to evaluate the ability of 300 mg/day of 3,3′-diindolylmethane (DIM) to increase the urinary 2:16α-OHE ratio in 20 women with a BRCA1mutation. BRCA1 mutation carriers (n = 15) were assigned to receive 300 mg/day of Rx Balance BioREsponse DIM for 4–6 weeks (intervention group) and five BRCA1 mutation carriers did not take DIM (control group). The urinary 2:16α-OHE ratio was assessed at baseline and after 4–6 weeks by immunoassay. There was no significant effect of DIM on the 2:16α-OHE ratio (2.4 at baseline vs. 3.0 after the intervention, P = 0.35). A short dietary intervention with DIM did not significantly increase the 2:16α-OHE ratio in female BRCA1 mutation carriers. Larger studies investigating the effect of dietary or lifestyle interventions on circulating hormone levels in these high-risk women are warranted."

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    I do know that the U of A medical center (they offered it to me and I considered it for a few weeks) is currently holding a clinical trial for women, post- b.c., in a double-blind study, to see if taking DIM or not prevents recurrence. I don't think they'd be offering this trial if there was any indication that DIM caused b.c.

    Claire

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2016

    Anecdotally, I have 3 relatives in my family who were not offered hormone suppression, all diagnosed before 1969. None of them suffered reoccurrence of BC.

    • One maternal aunt had BC in 1912, at age 24. Had UMX down to the chest wall *standard of care at the time* Died at age 90 of old age.
    • Another maternal aunt had BC in the 1960s, at age 47. Had UMX down to the chest wall. Died at 74 of lung cancer
    • Paternal grandmother had BC in 1969, at age 59. Had UMX down to the chest wall. Died at age 76 of colon cancer.

    I'm not advocating non-traditional medicine; I believe that western medicine is the way to go, for me. My family members' experiences are purely anecdotal and not scientifically studied. None of them took any supplements, nor adopted a special diet, and in fact my grandmother was a 3 pack a day smoker. However, they all lived to be over 73 years old and died of other causes.

    Your mileage may vary.

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    Mustlovepoodles, my great-grandmother had BC back in the 30s. She had a uni-MX, but no other treatment (because there wasn't any) and lived to a ripe old age. Of course, we have no way of knowing what stage these cancers were. Also, even today with all the adjuvant treatments we have, surgery is still #1 in terms of survival benefit. The rest is extra.

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    Claire, one would hope not, but it does seem like the science on this is at least somewhat ambiguous. I hope the study you reference will shed some light on the matter.

  • Momine
    Momine Member Posts: 7,859
    edited May 2016

    Claire, is this maybe the same study? http://uacc.arizona.edu/research/programs/cpc/intr... If so, it has to do with DIM possibly working synergistically with tamoxifen.


  • Ropes-End
    Ropes-End Member Posts: 23
    edited May 2016

    mustlovepoodles, thanks you for family history of the women. They seem feisty. I hope you too have the combined strength to match or surpass those ages. I am not sure how far west you would like to go with standards. For someone in China, the US is closer reached if he/she goes east. Please know that I am not being confrontational. You have your conviction. I believe if you think it, it is real.

    I, too, am looking at the road of tamoxifen and seeking an alternative. I understand why they give chemo. I understand why they are advocating tamoxifen. There is something unsettling about this memory impairment, cataracts, deep vein blood clots, stoke, more cancers in other areas, edema, birth defects (if I become pregnant) for 5 to 10 years. Would I give this to my cat or dog? Do not want to be sick for the rest of my life? What cure is that?

    Conventional medicine has proven statistics showing no improvement in bc survival rate under its treatment in 50 years. I am lucky my cancer was found early, but limited to the curative options. Tamo, is the only drug for pre menopause women, has been on the US market since 1970's. There is no pharmaceutical alternative or less toxic derivate. In fact, it was given by "quack centers" in Mexico before it got to "western medicine" standards and distributed in the US. Despite all the pink ribbon campaigns, this company has not produced any new alternatives to a 40 plus year drug it knows by itself causes cancer. Now, that I have survived the chemo which in itself causes cancer, let me move to on the road to another "expired drugs" thinking to another drug that causes cancer by itself.  I am going to take the chance on alternatives.  I am going to look for second, third, fourth,..nineteenth opinions.

  • pipers_dream
    pipers_dream Member Posts: 618
    edited June 2016

    varapappas, I know several women who've had the surgery and nothing else and all are doing well--all made lifestyle changes. A friend who got dx'ed with colon cancer at the same time I got my dx and did standard of care is now having a relapse but she made no lifestyle changes.

    I've had no conventional tx and I'm also doing well and take DIM every day and am very high on ER+/PR+--like over 90% on both. I'm not ruling anything out but as long as I'm doing well I'm going to keep doing what i'm doing.

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