Does DIM really work?
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What a dork...they are now public...went into settings and changed everything!
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Sandrsummers...good job! Thanks. Definitely makes it easier to answer any questions. Yes IMO you should get your estrogen level checked. Many MOs will not do it. Try your PCP or a naturopathic doc if that’s the case for you. Good luck and keep us posted
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Hi. I have not posted for years because it is 9 years (almost 10) since my diagnosis. I never was able to take an AI or tamoxifen for reasons too complicated to go into. But I did take DIM almost every day for the first few years after diagnosis and still do most of the time (I say most of the time because I do skip it every now and then). I am still here and doing well -- is it because of the DIM or because of the broccoli or because of something else--I don't know but I am grateful for each day and wish you all the best.
Mandy
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I am wondering why oncologists will not run these tests for us. I have only met my MO once and though she was nice and I am not sure if a couple with her. The whole discussion seem to be about aromatase Inhibitors and when I asked about DIM she kind of stared at me like I had two heads and said she had heard of it but didn't seem to know much about it. She basically told me that she couldn't make me take aromatase inhibitors but that she highly recommended it and would have her own mother or sister take it. I think she ordered my bone density test just to prove to me that at 50 my bones would be plenty healthy enough to do these drugs since that was one of my big concerns. However the test showed that my spine is osteopenic already so I'm more uncertain about it than ever. I have many concerns other than the bones but the bones are one of my big concerns and I do not want to take the medications they give that they say will improve your bones because they have even more side effects.
I have been very fortunate in the first 50 years of my life to be very healthy and I've never really taken any medications other than birth control pills. Until this past year I've never had a surgery. now I have had 3: 1 shoulder surgery and two breast surgeries for the cancer. I'm concerned about quality of life and I'm willing to make changes in my diet and exercise habits and I'm wondering if DIM might be a good choice for me. I would like to have a doctor that knows something about it though that can run tests to see if it's even doing what it's supposed to do and follow me through the process. Right now I don't feel like anybody is in charge. It reminds me of a relay team with no coach. Each leg of the race hands the baton off to the next person and I feel there is little communication or coordination.
So what exactly should I tell my MO about DIM? And what exact tests wouldI ask her to run? Are they blood test or urine test or how you go about exactly testing to see how well the supplement is working for you? I want to make some decisions and try to get on with my life. I feel like my whole life has been turned upside down since November and I can't live with it this way forever. I went from being on birth control pills for many years and feeling perimenopausal to finding out suddenly after going off of them that I'm postmenopausal. It has really thrown my body out of whack physically and emotionally. It seems like each day brings some new symptom that's probably a menopause / postmenopausal thing. But even though I feel like having less estrogen has lowered my IQ significantly, I still have to make decisions regarding the cancer. I don't know if anybody can relate to that or not but I feel like I can't think clearly anymore, I forget things, I forget where I put things and if feeling dumb is not bad enough, I turned into a klutz after being very coordinated for 50 years of my life. LOL I'm sure some of my memory issues are not just menopause they are being distracted with all the cancer emotions and decisions. So I need to make some decisions soon.
If anybody can give me any up-to-date information about dim or how I should present it to my oncologist or what test I should ask him to run I would greatly appreciate it as I'm tired of researching it on my own. Thanks so much in advance.
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Blondie...I refused an aromatase inhibitor from the start. I saw my MO once and she basically told me I do not need to see her if I do not take anti hormone therapy. Your stats are similar to mine, but I'm older. IMO you are a good candidate for DIM. I've been taking it from the beginning of my BC diagnosis. I think it would be hard to find a conventional doc that would be OK with taking it in leu of an aromatase inhibitor. You might want to try a naturopathic doc or integrative oncologist if you want your hormone levels checked. Also your PCP might do it. Not testing our hormone levels is a huge gap in our care. Good luck and keep us posted.
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Has anyone started DIM after finishing 5 years of Tamoxifen? I recently had the BCI test which showed me as high risk for recurrence but zero benefit for continuing Tamoxifen (or an AI). I am at the very low end of high risk with a 7.6% risk for recurrence and 5% is the cutoff from low to high. My MO has strongly recommended that I quit Tamoxifen since he feels the risk outweigh the benefits. I've now been off for almost 3 weeks. My joint pain has improved and the hair on my face isn't as thick. I was hoping to magically drop the 15 pounds I gained since DX but that hasn't happened. My biggest problem is I'm a worrier and I'm worried about doing nothing. That's why I'm wondering if going on DIM might give me some protection. Thoughts? Any SEs from DIM that I should consider?
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Thanks, solfeo. You make perfect sense for me. I'm thinking I might give DIM a try with my doctor's blessing of course. I do take many other supplements such as turmeric, ginger, magnesium, fish oil, baby aspirin, olive leaf extract, Vit D and a multi vitamin. I'm wondering if I should give any of these up since i'm not on T anymore like the turmeric and ginger which I took to help with joint pain. But I've read lots about both and I think they give benefits beyond T so I'll continue for now. Other than the possibility of DIM, any other suggestions? I do work out every day at least a half hour but usually an hour. I'm struggling with the weight but I'm not a healthy eater per se. I count calories and limit them but am not a fruit or veggie fan so I'm probably not eating the right way.
As to the BCI results, I can live with a 7.6% risk. Sounds low risk to me but it's the high risk label that has me freaking out. My MO asked me to stop the T and wait one month then evaluate how I feel. He's already called in a new RX for a year just in case I can't handle it. And I have about a month's supply sitting here for the same reason. At the end of the month, he wants me to then try a second month. He says it's like AA....one month at a time. He reminded me that I freaked out about going on and was fine so it makes sense that I freak out coming off. He really is the perfect doc for me! He said that just by exercising every day I knock my 7.6% risk to about 4% and if I'd lose 10 pounds it would go to about 2% so that's what I need to focus on. I just feel that "high risk" label warrants something and I'm thinking DIM is that something...like you said, even if it's a placebo effect.
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FYI...I take Breast Defend in leu of an aromatase inhibitor. Ive been NED for 3 years.m These are not easy decisions and I respect all decisions made. Ive been NED for 3 years. These are not easy decisions and I respect all made.
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Will DIM or BreastDefend help with hot flashes? Mine are worse now that I'm off Tamoxifen.
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Solfeo:
I have Breast Defend and was taking until Tamox, too -- and still have some. Did you feel it might interfere with Tamox?
Regarding Pectasol-C. I took before surgery (the info out there is pretty good about it, especially with prostate cancer if I recall) but I was worried that the citrus peel it's made from had the ingredient that is in grapefruit skins. (Can't remember what it is right now.)
I called the company that made it and they said it did not. Also a bonus that it removes heavy metals from the body. You're currently taking with Tamox? I may add that back to my agenda.
Thanks for the info share!
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Ok...I'm going to order DIM and give it a try. I'm also contemplating this Pectasol-C. I've checked it out and just can't afford the price they want. I see that there are other brands of modified citrus pectin. Would any of those work as well? Also, anyone ever tried JuiceFestiv which is a supplement of fruits and veggies? I don't do well at all with eating enough of those and hear a supplement can help. TIA.
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Solfeo: Thanks for the information! Yes, it was tangeretin.
lala1: Pectasol-C is expensive but I only do the one scoop as well (or did before). Just do your research on the other brands, if you choose to go that route. They may be very good.
My naturopath just recommended a fruit/veggie supplement that I believe is similar to the one you mentioned. I may try it. I'll post the name when I can recall what it was. LOL I feel the same. I'm not the biggest eater and trying to eat as clean as I can -- but there's only so much one can eat!
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Thanks for you guys reminding me about DIM. My father took it for a long time after he had a 5 mm squamous cell carcinoma removed - I am pretty sure he didn't take it before he got the SCC. He also took Maitake Gold and bragged that MSK did a study on it.
I wonder how much broccoli a person would have to eat to get the effect of taking DIM?
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Solfeo, how do you supplement the iodine? With drops? What brand? I was using seaweed but it’s expensive.
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thank you for sharing dlb83
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Just FYI...I take a product called Breast Defend in leu of an aromatase inhibitor
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I know this is an old thread--but I just did a search about DIM and found this. wondering how you are doing? this is the brand of DIm I am looking into getting, Thanks!
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I as well just found this and am looking at DIM instead of Tamoxifen. Will have to look into Breast Defend. It's so hard to decide on what all supplements to take
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This has been a very helpful thread. Would love to hear updates on how everyone is doing.
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Haven't started my hormone estrogen blocker. I'm so scared too. I've just finished my radiation 4 days ago. I just can't, so much fatigue and winded. I don't think I can deal with hormone Femara side effects. Thinking about DIM. Any suggestions?
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Welcome, roseclarita! We certainly understand your concerns about side effects, they can be so hard to manage. We hope you're able to get some feedback and hear the experiences of others here to give you some clarity and potential options!
The Mods
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I was DX at 31, tried ovarian suppression and an AI for a few months and it SUCKED..Nope.
I.was 100% ER/PR.
7 years later and I am still kicking!!! I may be lucky, maybe the DIM helps. It is cheap and I have no side effects..
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roseclarita...Hi just want let you know I've been taking Breast Defend in leu of an aromatase inhibitor from the start. Its been 6 years since my diagnosis. I'm not advocating it for anyone but myself. Good luck to all.
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I take a Mushroom supplement and DIM. Is the Breast Defense a Mushroom complex?
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I just realized this post was written in 2011. How are you doing so far, Annette? I'm leaning toward not doing the hormonal treatment because of side effects. My first day on anastrozole was a nightmare. I haven't taken it since and see my oncologist on Friday to discuss my decision. My heart doctor is also going to talk to her because of a TIA (mini stroke) and heart condition years before. He said that my oncologist would not stop seeing me, the medical center does not do that, and that she can just monitor me.
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Annette has not signed in in over two years, although she may still be reading. dlb823 (Deanna) passed away a few years ago. As for genetic mutations, the vast majority of bc patients test negative for all currently known mutations. For most of us, it is very difficult to pinpoint the origins of our bc.
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Thank you, exbrnxgrl. The visit with my oncologist went very well. She did tell me to stay away from herbal treatment, that it could do more harm than good. And that lowering estrogen levels is not the same as what the medication can do. But she did agreed to monitor me even though I'm considering not doing the hormonal treatment. She is ordering a breast MRI and then six months later a mammogram so that every six months I have imaging. But I decided to give anastrozole one more try, this time the brand name (Arimidex) and not generic. Eagle Pharmacy's price for the brand name is $60 a month. A member here recommended them. It's an online pharmacy. Has anyone heard of them? Are they reputable?
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I'm leaving a comment just to let others know I'm still around and kicking. Doing great 8 years in. :)
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Lisey, congrats on 8 years in! I'm looking for a good brand DIM or Breast Defend. There are so many out there.
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I'd like to weigh in on DIM/i3c, as I am planning to add it to my regimen now. A paper in Science a few years back showed that the primary effect of this supplement was to act as a targeted drug and inhibit the enzyme that degrades a powerful tumor suppressor that is very important in breast cancer, called PTEN. As a result, the levels of the PTEN protein increase as a result of taking this compound.
PTEN acts to suppress signaling by the PI3KCA kinase, therefore, it should work best on cancers that have developed PI3KCA mutations, which is a common occurence in cancers that have become resistant to endocrine therapy. Therefore it makes sense to try it when genomic testing shows the presence of one or more PI3KCA mutations.
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