Armed with a list of questions, I enthusiastically flew to San Francisco to hear what Dr. Esserman had to say about my DCIS situation and her recommendations for risk reduction and monitoring. After waiting 2 hours in the lobby and 1.5 hours in the exam room, Dr. Esserman finally greeted me. (I learned this extremely long wait is pretty standard for her patients.)
Dr. Esserman immediately sat down and told me her thoughts:
#1. She would NOT have done a wide excision (surgical biopsy) after an initial core needle biopsy revealed a diagnosis of Atypical Ductal Hyperplasia (ADH) in October 2009.
#2. She would have tried talking me into taking “Preventa” — the term she thinks we should be calling tamoxifen.
Dr. Esserman began by asking me, “if I could give you an intervention that could drop your risk by 80% — so instead of having a 25-30% risk of invasive breast cancer — I could take it down to 5%, would you do it?”
She went on to say, “tamoxifen, in young women, has almost no side effects; it reduces breast density and it is actually something we can measure. We know that in the case of atypia, (which is very similar to low grade DCIS), we reduce the risk of invasive cancer by 85%.”
I said, “there is so much conflicting information.” (I have been told by several doctors that tamoxifen would not benefit me enough to subject myself to the side effects). Dr. Esserman’s response was, “it’s not conflicting, it’s just that people don’t know about it. It’s right there in the P01 study. There were 13,670 patients in that study. And the people who had atypia had the biggest benefit.”
She went on to say, “With you — you have little bits here and there and I’m sure it’s everywhere. I wouldn’t keep taking it out.” A better option she suggested was to do “a global risk reduction” using tamoxifen.
I told her I am taking bio-identical progesterone as part of my natural risk reduction plan. Her response: “The one thing you should NOT take is progesterone. It’s like putting gasoline on a fire. That’s the one thing you should not be doing! I am adamant about that.” She said, “Nobody should be telling you to put something in your body that is mytogenic and actually is cancer causing. And bio-identicals — progesterone is progesterone — it’s the one thing you want to minimize.”
I said, “I tested that I was low in progesterone.” And she responded, “Good, fantastic, great — keep it that way.”
Oy! Can there be any more contradictory information!! My naturopathioc Dr. highly recommends bio-identical progesterone for patients like me with DCIS and who test low in progesterone and are “estrogen dominant” as a means of breast cancer risk reduction. Dr. Lee’s book, What Your Doctor Might NOT Tell You about Breast Cancer: How Hormone Balance Can Help Save Your Life, and other books I have recently read and list on my “Resources” page say the exact opposite to what Dr. Esserman is saying!!! I know many other women diagnosed with DCIS who are being advised by naturopathic/preventative doctors to take bio-identical progesterone.
Continuing the conversation with Dr. Esserman regarding tamoxifen, I said, “But Dr. Lagios told me that the studies on tamoxifen showed very little benefit for prevention and risk reduction and he believes DCIS is not hormone related. Also, my San Diego oncologist told me I would have only a 1-2% risk reduction,” so I pretty much disregarded it as an option. Dr. Esserman responded, “It’s true, in the UK, the studies on tamoxifen were all on high grade cancer and it didn’t work. Why? Because in the UK, they don’t biopsy the kind of calcifications you had. Their cancer to biopsy rate is 50%. Ours is more like 20%. We biopsy every calcification that looks even remotely suspicious. Which is why we find all this stuff. Which is why I wrote all those things you have on your website.”
Next steps discussed: Dr. Esserman will order the Oncotype DX test which will determine whether I am at higher risk (15%) for invasive cancer or lower risk (5%). I told her the outcome of this test may effect my decision to consider taking tamoxifen, but I would definitely need to do more research on it.
More about Dr. Esserman: http://www.nobhillgazette.com/wp/2011/01/profile-2011/
More about tamoxifen: http://en.wikipedia.org/wiki/Tamoxifen
Are there natural Alternatives to tamoxifen? Thanks to Elyn Jacobs, we have some answers. Please see her article here.
I know this is quite a controversial subject and I’d love to get some feedback on this so please share your comments!
You’re right. There is a sea of conflicting information out there on Tamoxifen. I have known several women who have attempted to take it and only 1 out of the 3 were able to take it at all and she has only been on it a year so far. My medical oncologist was trying to sell me on it before both feet were across the threshold of the examining room. I kid you not, before she even made it entirely in the room she was saying “we need to start you on Tamoxifen”. This, even though there were unaddressed discrepancies in the pathology report and this was our first meeting. She continued to pressure me on my next 2 visits, even scheduling me for unapproved labs when I arrived for my 3rd visit assuming I would have been scared into taking it by then. I took tamoxifen back in the 90’s for a breast cyst for a short amount of time. It was prescribed by the same Dr that 10 years later put me on bioidentical hormones. So, block all estrogen, then increase estrogen (I did what I was told back then.) When he retired and I switched to a Dr recommended by him, the new Dr told me I was being kept on an alarmingly high level of hormones and that my old Dr had an extremely high number of patients being dx with breast cancer. 4 years later I was another. This is a good article on Tamoxifen:http://www.all-natural.com/tamox.html It addresses many of the concerns. There is also interesting information in the Donald Yance book about herbs that have the same effect as Tamoxifen. All you can do is research, research, research and then follow your heart. You’ll make the right decision for you. (I think the fact that the company who manufactures it makes cancer causing products was the thing that solidified my NO decision.)
Thanks Kay for sharing your insights and for the article link. I read it and my understanding of Tamoxifen was more of what this article states (prior to my visit with Dr. Esserman). I will continue to investigate and share what I learn. I hope others chime in!
I was diagnose ADH over l8 months ago. I had a lumpectomy to remove the atypia whic left with a hugh hematoma. I went for my diagnostic mammo in July and DCS is the same breast was discovered. I had a lupectomy and 7 weeks of radiation (ugh). Went for a 2nd opinion and foud another cluster of calfication in the left breast. It was b9. Went through a MRI and found 2 masses. I had those bioposied through the MRI. I just started on Tamoxifene. I could not tolerate the side effects. I go fo a 6 month mammo in March.
Thanks for sharing your experience. I totally feel for you and all that you have gone through. Were the 2 masses benign as well? What were your side effects from tamoxifen? How long were you on it? I hope you are finding ways to minimize the stress of it all. I’m also curious as to what grade and size your DCIS was? Sending you love and light on your journey of health and healing. ~Donna
Hi Donna: i found your website via breastcancer.org. I was DX with DCIS in early December. They also biopsied my left at my request and originally I was told hyperplasia withhout atypia. I changed facilities within the same medical group (Kaiser) because one had a more comprehensive breast center. They retested the samples and determined that the left was ADH (and agreed DCIS in right). They sent out the samples to UCSF who felt that both breast were ADD. Before those results came back, I had a lumpectomy on the right side on Jan.3. Results came back “miniscule residual DCIS” with margins of nearly 1cm, so no rads recommended. Even though it was overkill and he is considered very controversial by many doctors, I consulted with Dr. Lagios. He basically concurred with all the other path reports (DCIS on right, ADH on left). He recommended an MRI in a few months as a way to avoid an excisional biopsy on the left-which my surgeon wanted to do right away. She agreed to order MRI and wait. I meet with the oncologist next week to talk about Tamox, which I know she will recommend. A friend of a friend is a colleague of Esserman in the UCSF breast center, and she too recommends it, saying that as a pre-menopausal 52 year old there are significant benefits. I would prefer to try alternative methods such as calcium d-glucarate and DIM along with other supplements and dietary changes you have talked about, but there really is no hard evidence/long-terms studies that they work. I am very concerned about SE’s but want to do all I can to prevent any kind of cancer, so I am leaning towards at least givi g Tamox a try. These are difficult decisons! In terms of bioidentical hormones, similar to what Esserman told you,I have had my OB at Kaiser as well as the gal at UCSF tell me that “hormones are hormones” and bioidentical is virtually meaningless in terms of how the body processes and uses them-so I would be cautious there. All the best,
Thanks for sharing your story. You are right…difficult decisions! And there is not one right answer. Everyone has a different circumstance and it’s important to make decisions based on your individual pathology/cells/risk tolerance. From what I have researched about bio-identical hormones, I don’t agree with the notion that “hormones are hormones.” We all have to investigate and come to our own conclusions about it. I would love to have more hard evidence/studies on this topic! My medical oncologist did not see much benefit from tamoxifen and Dr. Lagios states there is no benefit at all! Again, we all have to gather as much info as possible, then go with our gut. If trying tamoxifen feels like the right thing to do, then I’d say that’s the best treatment option FOR YOU. If you so give it a go, I’d love to hear about your experience with it…and I’m sure others would as well. I know there are many women sharing about this on breastcancer.org. Sounds like you are doing all the right things. Stay positive and keep in touch!
Hi Donna: I am waiting for a response from my MO about natural progesterone cream. I am ER+/PR-, so I am wondering if in my case, it might actually be OK to use since I have given up my Evening Primrose oil and Black Cohosh/Vitex supplements after being diagnosed (too many mixed reviews about impact on ER positive cancers) . So now my breast tenderness and other perimenopause symptoms are driving me crazy! I also am waiting for her opinion on this interesting study about limited benefits of Tamox for PR negative cancers.
What is your current thinking on the Progesterone cream after meeting with Esserman and reviewing with your naturopath?
Sorry for the long delayed reply! I must have missed this one. I stopped the progesterone cream after a few months — my naturopathic Dr. said she did not want to keep me on it long-term anyway. I like not being on it actually. It made me feel itchy. I have totally eliminated breast tenderness and I believe it is due mostly to iodine. How are you doing? 🙂 Donna
I would tell everyone to NOT take Bioidentical Progesterone Creme. I took it for 2.5 years and ended up being diagnosed with 2cm DCIS and ADH. Bilateral mastectomies were done, and now reconstruction. A huge cost for buying into the lousy scheme of BHRT.
Thanks a lot for sharing your story and sorry for your experience with bioidentical progesterone. It’s important to hear from women like you. I am wondering why you chose bilateral mastectomy though? Was there ADH and DCIS found in both breasts? What prompted you to take bio-identical progesterone? Were you advised by a naturopathic doctor? Thanks for more insights. Wondering your age also. Thanks. Donna
Donna, the two masses in the other breast were benign. My dcis was considered low grade, but went for second opinion the path report was upgraded to medium grade. I am now resultant lay taking Fareston. My side effects are hot flashes. I go every Dix months for check ups. Not hank you. Boh. The size was .03 centimeters (I think). Trying to forget the details and try not to worry. :0)
I would be hesitant to fully blame the progesterone or any one thing for ADH, DCIS or breast cancer. There are too many other factors to consider. Stress, diet, acidity, toxins, hormones, genes all play a role. We can do everything “right” and still have abnormal cells. I’d like to hear from other women who have had positive or negative experiences with bio-identical hormones. My naturopathic Dr. has many many people she works with successfully using bio-identical hormones. Several of the books on my Resources page discuss the protective benefits. It is hard to trust in anything these days! I am still investigating this topic. Would love for others to chime in! Thanks!!
Hi Donna: Unfortunately, there is not a lot of research available of Bioidenticals vs. other types of hormones, but 2 of my doctors had concerns on a couple of levels that seems to be supported in the link I provide below: 1) because hormone levels fluctuate virtually daily, the saliva tests (and even blood tests) to check levels upon which the dosages are based are not really accurate; and 2) many of the labs that produce the bioidenticals are not regulated, you may not be getting the dosages that you think you are. I have made the choice to stay away from this stuff since there is simply not enough evidence one way or another about the role of hormones in BC and focus rather on a healthy (though not vegan) diet, and a few key supplements that seem to have enough evidence behind them for breast health (curcumim/tumeric for anti-tumor properties, Vitamin D and Omegas). I am looking into mushroom combos which also seems to have some pretty compelling benefits. I have decided that with all the unknowns, I am going to leave my hormones alone to do their own thing on their own time-this is also why I decided against Tamox! I am almost 54 and still pre-menopausal. Best, Suzanne
Here is some good research in favor of bio-identical hormones: http://www.lef.org/magazine/mag2009/oct2009_bioidentical-hormones_01.htm
I am a 52 year old, premenopausal (doctor, actually) with ADH diagnosed in my late 30s. At the time I had not even had kids yet so was told “just have your kids, then we’ll talk”. Fast forward, had my kids, still premenopausal, and trying to decide what to do. I was told by two oncologists, take tamoxifen (and paid out of pocket for BRCA testing – “just in case”- which was negative). No family history. I was so worried about the side effects of TAM after going through IVF and not tolerating the estrogen deprivation well. Then I went to see a prevention person, who reviewed my biopsy (ADH, single focus only) told me most women do not tolerate TAM, I would not even give it to you based on your biopsy; you could even take a little HRT if you need it. Now, I am having some symptoms, around the luteal phase (premenstrual cramps, worse than I ever had in my life) and wondering…… I can’t find any good data in the medical literature, which is the only thing I’d really trust besides expert opinion. I agree you have to weigh the risks and benefits for yourself – what is having intact breasts worth, how burdensome is the screening, how bad are the perimenopausal symptoms? I haven’t decided what to do – TAM, a bit of hormones, if so which ones, nothing (=ibuprofen). Thanks for your site.
Hi Tirnauer! Before considering Tamox or hormones (bio-identical or otherwise), you might want to consider looking into some of the more reputable herbal periomenopause formulations sold at places like Whole Foods, etc. They usually contain some combo of Black Cohosh &Red Clover. I found that they helped with symptoms quite a bit. I stayed away from the ones that contained soy, and stuck with Flax seed or Evening Primrose oil. I now also take a Tumeric supplement which seems to help with my extreme cyclical breast tenderness better than anything else! Good luck. http://menopause.about.com/od/alternativetreatments/a/AltMenoTx1.htm
Does anyone have any updated opinions about progesterone cream? I ordered Emertitus Progest, but haven’t used it yet. I have atypia, ovarian cysts off and on, and fibrocycstic breasts. I take DIM and Calcium Gluconate. I don’t want to take the cream if the jury is still out on it.
I’m wondering if anyone has anything current to say about bioidentical progesterone.
I’ve used prescription bioidentical progesterone for almost 15 years to manage endometriosis. Without the progesterone, the endometriosis would have grown out of control and I would have needed surgery after surgery. (I’ve only had one surgery for endometriosis back in 2005.) Anyway, now my first mammo showed calcifications and a biopsy showed ADH bordering on dcis. I asked two well-known medical facilities to further test my biopsy sample for hormone receptors but they both refused. I explained to them that as an endometriosis patients using progesterone for the past 15 years this would be vital information and they still refuse to do it. (They only do it for dx of DCIS.).
I welcome any thoughts or personal experience.