Posted on: Aug 6, 2012 09:37 PM, edited Aug 8, 2012 01:31 PM by Natkat
Hello please post here ONLY if you are researching or using natural tx to address hormone responsive cancer. Please stay on topic - no posts about standard drugs or ovary removal. No posts about general anti cancer. Thread for people who need alternatives SPECIFIC to hormone responsive cancers
Will share my own research and looking foward to hearing about yours
Posts 511 - 540 (1,100 total)
Nov 18, 2012 02:30 PM andygirl wrote:
momoschki-that's the first I have heard of carrots reducing estrogen. So far most sites are suggesting celery, parsley, and cruciferous vegetables such as broccoli, brussel-sprouts and cauliflower. Love to know more about the carrots.
Nov 18, 2012 02:44 PM, edited Nov 18, 2012 03:11 PM by momoschki
I have no idea whether the carrot thing is valid-- came across it in my obsessive Internet searching. Apparently promoted by someone named Ray Peat in the 70's . Purportedly, one carrot in the morning (on empty stomach, preferably shredded lengthwise with oil and vinegar) should lower estrogen and up progestetone, thus eliminating estrogen dominance.
Nov 18, 2012 03:18 PM Mini1 wrote:
I know people that have taken the meds and are fine. I've known people that have not take them and are/were fine; my mother being among the latter group. And I've known people that have had the opposite experience. If there was one fool proof method, we'd all be cured. There are also those of us that have medical and/or genetic issues to take into consideration when making our decisions. I do agree that like the review of any thing-a hotel, an apt., an appliance-people that have had a negative experience are more likely to post something; however, that being said, people on here have asked specifically for the experiences of others and they were told what others have experienced. And the fact of the matter is that a lot of people have had very negative experiences. Additionally, people can and do get new and/or recurring cancers while on the meds. Not to mention that Tamox is on the ACS's own list of known carcinogens not once but 3 times. It's not a simple black or white issue. If you only want to hear the good, than perhaps the question should be formulated in a different manner or asked in a Tamox support thread. I don't believe that anyone wants to dissuade anyone from doing what they think is right for their personal situation, but I also don't think that you're going to get the whole story on a big pharma web site or an all pro med thread.
OK, rant over. :-)
Nov 18, 2012 04:11 PM kayb wrote:
It's true, it's not a black or white issue, but having come to this thread, the experiences we've all related tend to be negative, so I don't fault andygirl for asking if there was anything good to say. I hate how BCO threads don't seem to allow both good and bad experiiences to be discussed in the same thread. People who are taking the drugs don't want to hear scary stuff, and people who don't take the drugs seem not to want to hear anything that might invalidate their own choices.
My own feeling is that everyone needs to read all they can and basically ignore the really "rah rah" posts on either side of the argument. Statistics show that the down the middle ones are the experiences that are most likely to be repeated.
We all accept a certain level of risk one way or another. The trick is knowing yourself well enough to make choices you will be happy with. What anyone else chooses to do or to believe is really their thing, IMO.
I had to stop both Tamoxifen and AIs because I had horrible SEs. Mostly monster hot flashes, but also the aches and pains. My Onc, who's been doing this for more than 30 years, told me he had never had a patient whose SEs were as extreme as mine. That's why he stopped the drugs. I decided to take DIM on my own but have found I can only take half the recommended dose because, guess what? I get the same extreme SEs from that, too! So it's all about how your body uses estrogen or responds to a lack of estrogen, and taking a natural approach doesn't guarantee an easier path.
Tamoxifen works well for many, not well for others. The vast majority of women who take will not end up with endometrial cancer but who will isn't predictable. There may be non-big pharma choices that will serve us as well as Tamoxifen, but since there's no science to prove it, we all gamble again. I don't rant about how unfair it is that there's no money to test those non-pharma things, because that's just how it is. Businesses exist to make money so the research is done on products that make them money. Lamenting that won't change things in time for my TX. So I make my choices based on the best info I have today.
So that's my rant ;-) Enough said.
Nov 18, 2012 04:14 PM dancetrancer wrote:
Well said, kayb.
Nov 18, 2012 05:01 PM, edited Nov 18, 2012 05:10 PM by Mini1
I wasn't finding fault with anyone for asking, simply weighing in on why there were negative responses given and where they might find more of the type of responses they were looking for. I thought I conveyed that in my response. Apparently I didn't do it well. I believe we all have to make the choices that are right for us. I have no problem with agreeing to disagree with someone. Far from it. I come to these pages to hear varying opinions, not just rah, rah posts from people selling something.
I too had to stop taking meds because of the severe SE's. Mine were so many and so severe they have them listed as allergies. I have been told by both the well-meaning and the mean-spirited that, basically, I'm a fool for not taking them; that I'm signing my own death warrant. I've been told the good, the bad and the ugly about treatments from professionals, friends and family. I would never think of telling anyone what they should or shouldn't do for their own treatment, but I will answer honestly when someone asks me about my experience. And in my instance it was decidely negative. I'm sure others feel the same way. Why does saying that make me devisive or negative? Especially given that this is a natural treatment thread. I would expect to hear more against the drugs than for them. Isn't that the purpose of this thread?
Nov 18, 2012 05:53 PM kayb wrote:
given that this is a natural treatment thread. I would expect to hear more against the drugs than for them. Isn't that the purpose of this thread?
I didn't mean to suggest you were being devisive. I think some people just want to know more about what other kinds of choices they have, but at BCO, if someone on a conventional medicine thread brings up an alternative they get jumped on. But on this thread, as you said above, you expect to hear more negative stuff about the drugs. I just wish there was someplace here at BCO for neutral ground. A place where someone could explore all options, ask whatever questions they need to ask and not have to find the pro-this or that thread to do it. When it comes to conventional, complimentary or alternative subjects, it seems like I'm always seeing someone being directed to a different thread to find the answers they seek if they stray from the norm for that forum. If people are kind to each other, I don't really care what questions they want to ask. I like hearing other's experiences with TX - both good and bad.
The thing is - I participate on a lot of different threads. For example, I did do chemo and my immediate result was as good as it gets - pCR - so I'm glad I made that choice for me. I'm happy to share that info when someone's interested or asking, but I'd never assume my choice should be anyone elses. I also have long been a fan of complimentary and alternative medicine. I'm not a zealot for any one of them though; I choose whatever seems best for the task at hand. So in some ways, I don't fit on any of the forums because I'm likely to clash with someone else's thinking on any one of them - LOL! Thus my wish for an elusive neutral ground!
Nov 18, 2012 06:53 PM Mini1 wrote:
Actually Kayb, we're more alike than you know. I had radiation. I tried AI's, but they made me sick. I go back and forth with the pros and cons of meds or no meds. I read multiple threads here and other places to learn what I can - much of which is often conflicting. I can make equally compelling arguements on both sides of the meds or no meds issue.
I think they label the threads the way they do because they are trying to avoid the arguing about which is right, which I understand. If you want info on one subject, you don't want to wade through a lot of other stuff to find it. I came here after I found I couldn't take the medicine. I've learned aong the way that that might not be such a bad thing afterall. Maybe we need an anything goes thread. :-)
Nov 29, 2012 01:37 PM BoomersMom wrote:
I took Tamoxifen for six months after I was done with radiation and the SEs were terrible. I had a hard time sleeping, concentrating, bone and muscle pain, and no sexual urges at all. I'm now 32, and I just felt like my life was going down the toilet. I want to have a family and feel sexual attraction. I was so set in my decision and now 8 months later... I feel that oh crap, what did I do? My cancer was "strongly" estrogen positive, and I feel like I might have signed my death sentence. This is a horrible feeling. How do we know? If only psychics were real...
My boyfriend is wanting me to go back on Tamoxifen at least for a year, try to give it a go. My oncologist, of course, wants me to go back on. The thought of feeling like a zombie of myself for the next year is just horrible. Why are these our options?
This thread gives me hope. I'm not alone in thinking the AIs and the related meds can't be the only way. I need to change my lifestyle to help improve my odds, especially if I keep denying Tamoxifen. I'm 32 and not even remotely close to menopause. This sucks. I wish I could tell my hormones to stop trying to cause problems.
Nov 29, 2012 03:26 PM dogsandjogs wrote:
i don't see why anyone with a double mastectmy needs an AI. the breast tissue is gone---
in 1982, i had a mastectomy - no other treatment in those days-- no recurrence - i was 46. the most recent one was a new primary so evev if the ai supposedlr helps prevent a recurrence, it won;t prevent a new cancer will it?
sorry about the typing -broke arm last week in a biootcamp class. i have bad osteoporosis and the few months on aromasin didn;t help so i think i'll lame the break on the drug. LOL
Nov 29, 2012 03:48 PM kayb wrote:
There have been studies around for years that say AIs can reduce the risk of distant recurrence, too. And even with mastectomy, there is a wee bit of breast tissue left behind. It's not possible to get it all so a few - very few - unfortunate women can have a reccurence in the remaining breast tissue. It has to be found by physical exam.
I'm not suggesting that this means everyone should take an AI - just passing on the info like here:
Tamoxifen however, has been shown to be most effective in preventing recurrence in breast tissue.
Nov 29, 2012 04:35 PM Mini1 wrote:
Boomersmom - I'm older than you but I feel the same way. AI's were horrible for me. They have them down as an allergen for me. I'm afraid of Tamox for the same reasons. I remind myself that people can and do get new and recurring cancers while on the drugs. The majority of women survive without them. I have changed my eating habits and take DIM and other supplements and live the best I can. There is a quality of life factor involved. There's a difference between living and surviving. I'm choosing to live. What else can we do?
Nov 29, 2012 05:21 PM purple32 wrote:
the well-meaning and the mean-spirited that, basically, I'm a fool for not taking them; that I'm signing my own death warrant.
My BS at MGH said , and I quote : " We really have no idea whether they help or not!"
My current MO said, and I quote : " I would say it makes no diference whatsoever if you take them or not "
I am guessing if I were a different stage this would not have been their comments. I agonized way too much over it.
Now that I have lymphedema, I rarely think of BC!
Nov 29, 2012 07:03 PM Momine wrote:
Dogs, if there is lymph involvement, as one example, then an AI may play an important part in warding off mets.
Nov 29, 2012 09:51 PM mybee333 wrote:
I know this is a natural thread so please bear with me. If the goal is to reduce estrogen, why not more oopherectomies? I had my hysterectomy due to cervical cancer before BC but now I am glad. Yes I am prone to depression and anxiety, no doubt, but I do take some comfort in being ovary free.
Nov 30, 2012 03:45 AM Momine wrote:
Mybee, as far as I understand, many people who go natural want to avoid surgery as well as drugs.
Nov 30, 2012 12:20 PM kayb wrote:
I think that when it's possible, if the ovaries are intact, using Tamoxifen may help protect breast tissue but still allow a bit of estrogen to protect the bones. Obviously, everything is a trade off so for a lot of women, removing the ovaries helps with gynocological problems and may be beneficial in preventing a recurrence.
I can see how that's a comfort, Marybe, considering how awful the drugs have been to you!
Nov 30, 2012 10:00 PM rgiuff wrote:
Purple, really surprised to hear what your doctors said, but shows that they are thinking for themselves and not just quoting what the studies say.
Mybee, removing ovaries is pretty drastic, especially if a woman is still premenopausal. I always think about it being equivalent to removing the testicles on a male. In many cases, women want to find natural ways to have the beneficial estrogen still in their body, while eliminating the bad estrogen, which is what some supplements, such as DIM are supposed to do. Also, I believe the bad estrogens that need to be eliminated are the xenoestrogens, also known as endocrine disruptors, commonly found in many household and cosmetic products, as well as pesticides and other chemical sprays. I refuse to accept that our natural bodily estrogen is the culprit here!
Dec 1, 2012 12:18 AM mybee333 wrote:
I had never heard that any estrogen was considered 'good' estrogen when your cancer is ER+. My tumor was 95% ER+.
At the time I had my hysterectomy (for cancer), I was not going to have my ovaries removed. But the nurse talked me into it two days before surgery, telling me that she had seen too many cases of ovarian cancer, the 'silent' cancer, and that I no longer had a need for them. She said that after a short time " You'll feel better than you've ever felt". Also - the doctor indicated that the loss of your uterus cuts off most of the blood supply to the ovaries anyway, so they only last a few years. I was already 50 yrs old and perimenopausal, skipping periods, so I impulsively said yes. I regretted it completely because life was very hard after that for me. The anxiety, the depression, moodiness, hot flashes and night sweats were tremendous. There were nights I couldn't sleep at all. So I took ERT(many types, including bio-identicals) which helped some, but I was never the same. I do think though that is why I have such difficulty tolerating the AIs. I think it is just too much, perhaps at my age and in combo with fibromyalgia. It's just too much estrogen deprivation for my body.
Dec 1, 2012 04:19 AM Momine wrote:
Rgiuff, in this context, if it works like estrogen in the body and is metabolized like estrogen in the body then it fuels estrogen-dependent cancers. AIs prevent the body from metabolizing the available estrogen. I think that DIM does something similar, albeit probably on a slightly smaller scale. You can also eliminate some estrogen from being used by simply eating a lot of fiber, according to one article I saw.
However, as far as I know, there are not two kinds of estrogen, good and bad. Whether made by the body or pseudo-estrogen from some other source or synthetic estrogen from hormone replacement therapy, if it gets metabolized as estrogen by your body it will fuel the cancer.
Dec 1, 2012 07:37 AM purple32 wrote:
. I was already 50 yrs old and perimenopausal, skipping periods....
What a shame mybee!
Stupid nurse. Some of these med. prof. apparantly have never heard of " First, do no harm!"
Dec 1, 2012 10:15 AM Lily55 wrote:
Look up Indole 3 carbinol or see info on cancer active dot com re natural approaches to hormone positive cancers.............a lot of good research on there
Dec 1, 2012 10:59 AM exbrnxgrl wrote:
Yes, DIM is a capsule. Available at most health food stores. I buy mine at Whole Foods. Yup, I take DIM and Arimidex. My bc is 100% ER+ so why give it any fuel? BTW, I have extremely mild se's from Arimidex, joint stiffness in knees if I sit too long. Good reason to keep moving!