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Topic: HRT After DCIS

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 11, 2014 01:20PM

Alpineartist wrote:

Ladies, you are a rich source of information when you have it, and a great help for research when you don't yet have it. I'm so grateful you are here. I'd like to open up a can of worms. Not for the sake of it, heaven knows, but for the sake of menopausal DCIS patients such as myself in dire need of symptom relief and the sake of science in general.

Quick background. As noted on signature, Small, well-excised, low grade (ER+ PR+) DCIS lesion removed one year ago. No rads or endocrine therapy thus far. 6-and 12-month scans good. (Thankful).
My last period was also one year ago, the month before surgery. Menopause came, and hell came with her. Nearly all symptoms, severe in most cases. Debilitating arthralgia preventing exercise, even walking. Vaginal tissue remodeling with painful cyst development and severe dryness and infection. Severe flushing day/night, mood and sleep disturbances, you name it. 

On one hand, with an ER+ lesion, it was somewhat comforting to know that estrogen was so low. (-Bloodwork confirmed this). I "toughed out" the months as anyone on Tamox or AIs would do, gaining assurance that any remaining ER+ tissue in either breast was slowly starving. But after one year of it, I began to wear down. How long would this go on? I had tried non-hormonal therapies of numerous kinds, with some success but not enough to return to exercise in any meaningful, cancer-protective way. Even work (I play guitar and paint pictures) became a serious challenge as intricate hand movements required were no longer possible. This had become a significant quality of life issue and had to be addressed better, and soon.

Long story short, I began studying. And studying, And studying. What I found was not only surprising, but exciting. 
We all know that since the WHI and MWS (huge studies in the late 90's), history (even family history) of BC has been a contraindication to hormonal therapies, as exogenous estrogen is known to (if not mutate DNA and cause tumors) certainly proliferate those already there. But new studies are being done every day. And evidence is accumulating that may challenge this protocol. 

In the WHI, conjugated equine estrogens (CEE) were used, alongside synthetic progestins such as MPA for uterine protection in patients with uteri. These were the standard drugs of the day. The evidence was iron-clad that these compounds increased risk (though slight in absolute terms). However, since that time, compounds have been developed that present greatly improved safety profiles. I ignore celebrity endorsements, nomenclature such as "bioidentical" (though it may be valid), media articles and even certain high profile doctors. I don't care. Show me the numbers. Show me the science. Show me Pubmed, Medscape, etc.What are the relative risks for these compounds vs controls? What are the methods? Cohort sizes? Time of treatments? Time of follow up? 

A landscape began to emerge. Each time relative risk was more than 1 (elevated risk) it was (you guessed it) CEE/MPA or CEE/NEDA. Each time RR dropped below 1 it was something else, such as estradiol and progestERONE (not progestINS). Again, and again, and again. Sometimes the compound id was buried deep in the "methods" part of the study, but the trend was clear. Compounds, delivery (such as transdermal vs oral) and timing protocols (continuous vs sequential) all mattered when it came to safety. Risk appears to be going down. Even for BC (DCIS included) patients. There might be some hope here for those of us BC'ers who suffer due to estrogen deprivation symptoms, but we may need to dig for it. 


What I'm asking for is help with an open-minded look at this. If it doesn't pan out, I'll take my cohosh and try to move on. But some of the best researchers on the planet are here, and I can't move on until I know what some of you have to say. I have pages and pages of the studies I speak of and would be delighted to share them with anyone also curious enough to see if it is time to amend the old WHI guidelines. Here are just a few to start off. Thank you so much.

 France, B. de Ligneieres 2002

we were unable to detect an increase in the relative risk (RR) of breast cancer (RR 0.98, 95% confidence interval (CI): 0.65-1.5) in the HRT users. The RR of breast cancer per year of use of HRT was 1.005 (95% CI 0.97-1.05). These results do not justify early interruption of such a type of HRT, which is beneficial for quality of life, prevention of bone loss and cardiovascular risk profile, without the activation of coagulation and inflammatory protein synthesis measured in users of oral estrogens.

Fournier, et al, BCRT Jan 2008

The association of estrogen-progestagen combinations with breast cancer risk varied significantly according to the type of progestagen: the relative risk was 1.00 (0.83–1.22) for estrogen–progesterone, 1.16 (0.94–1.43) for estrogen–dydrogesterone, and 1.69 (1.50–1.91) for estrogen combined with other progestagens. 

France, Corvina-Duverger, 2013

We found that breast cancer risk differed by type of progestagen among current users of EP therapies. No increased risk was apparent among EP therapy users treated with natural micronized progesterone... These results do not justify early interruption of such a type of HRT, which is beneficial for quality of life, prevention of bone loss and cardiovascular risk profile, without the activation of coagulation and inflammatory protein synthesis measured in users of oral estrogens.

Progestins and progesterone in hormone replacement therapy and the risk of breast cancer, 2007 Carlo Campagnolia

We have seen on one hand, that the evidence adduced in favour of the ‘estrogen augmented by progesterone’ hypothesis is open to different interpretations, and on the other that the physiological production of progesterone during the menstrual cycle may be associated with a lower risk of BC. The lack of increase in BC risk with HRT regimens cyclically containing natural progesterone, found by the E3N-EPIC study is therefore biologically plausible. It is probable that the increase in BC risk found in other studies on HRT use is related to the continuous-combined regimen employed and/or to the fact that synthetic progestins rather than progesterone were used.

The balance of the in vivo evidence is that progesterone does not have a cancer-promoting effect on breast tissue. This provides a biological rationale for the finding that oral micronized progesterone added to estrogens in sequential or cyclic-combined regimens does not increase the risk of BC. The greater BC risk persistently related to the use of HRT preparations containing estrogen and synthetic progestins seems in all likelihood due to the regimen and/or to the kind of progestin used. The “non-physiological” continuous-combined regimen, could increase the risk because it does not allow sloughing of lobular duct epithelium (such as occurs when progesterone declines at the end of the normal menstrual cycle). More importantly, many of the progestins used have several non-progesterone like actions that potentiate the proliferative effect of estrogens on breast tissue and estrogensensitive cancer cells. We therefore suggest that when HRT is indicated, preparations containing progesterone and not a synthetic progestin should be used, according to a sequential or cyclic-combined regimen. In this way the risk of endometrial cancer is minimized without increasing the risk of BC.

ccc

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 31, 2014 08:03AM Alpineartist wrote:

Anyone? Anyone at all? I would love some input on this, even arguments to the contrary, as this is the only way to learn. Thank you!

Kay

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 1, 2014 02:06AM LilacBlue wrote:

I can see where you are coming from and really are weighing up the pros and cons.  Yet for me, HRT is not indicated nor will it be again. I was taking HRT seven years before diagnosis - a tablet called Angeliq. Each tablet contained both estradiol and drospirenone.  I think the HRT I took was the main contributing factor to my having two small tumors and dcis. Of course none of my Dr.'s can or will, pinpoint that as fact. Using HRT in any form is not a risk for me, worth taking.  I hope you find the forward action you deem would best serve you and long-term outcome.

 

Nothing is ever the same as they said it was. It's what I've never seen before that I recognise. - Diane Arbus Dx 4/13/2012, DCIS/IDC, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 6/12/2012 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): DIEP flap, Nipple reconstruction
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Sep 1, 2014 05:03AM Ariom wrote:

I just wanted to say Hi, I doubt my experience will be of any use to you, but thought I'd give you my slant on this subject.

I started to go through Menopause at 38, with mainly flashes and some mood swings. I had Doctors strongly suggesting I take HRT, but I just didn't feel it was right for me. There was always something about it, I couldn't justify taking it.

Then my Mother was Dx with BC and I was even more sure, I wouldn't take it. It took about 5 years for all the Menopausal symptoms to pass.

In the meantime I was Dx with Rheumatoid Arthritis and had to take some dreadful drugs for that, including 7 years of Methotrexate (chemo drug) and Steroids for 18 years. I have been -3 Osteoporosis since 2003, so my bones have suffered, but I believe the drugs probably had more impact, than my not taking HRT.

I was Dx with DCIS in late 2012. For me, I have no regrets about rejecting HRT, but would never suggest that my decision would be right for everyone. It is like everything else on this journey, you have to go with what feels right for you.

You have done your research and are having serious symptoms, it is a tough one. I wish you all the best with your decision.

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Sep 1, 2014 09:38AM - edited Sep 1, 2014 06:06PM by Alpineartist

Thank you so much, ladies, for your responses, and well-wishes. This forum is invaluable not only for its vast wealth of information but its treasure trove of friendship and support. I hope to be able to contribute in my own little way as time goes by in return for all I've learned here. I guess that's what this thread is about. Helping others (while helping oneself) with research. -Research that, with regard to our doctors' advice, employs "trust with verification." ;) 

When it comes to health issues, I've learned to question everything, I hope in a healthy way. It's amazing to me how often we learn that what we once thought about our health in some aspect or another is no longer true. From butterfat to sunshine to grains in the food pyramid. I'm not much of a conspiracist. I really don't believe that someone is out to hurt us when we re-think science. We are just human. Sure, sometimes money talks. And conflicts of interest abound, especially in the cancer-treatment landscape. But I've lived long enough to know that we're just doing the best that we can, and re-thinking takes a lot of time and energy. But inevitably, even where we are dead certain, we will be wrong again. And again, and again. It may take several years each time for us to know it, accept it, and reverse course, but it is the way of science. We mustn't let it frustrate us. We can only act for ourselves. I strive to be one who is open enough to see evidence of change in time to benefit from it, and perhaps help others to, as well. Watching news in HRT science, it appears that a re-think is already in process, and it fascinates me, not only because DCIS and life-altering menopausal symptoms have intersected in my life, but because this is the case for so many, many women. If (IF) we've been off-target on this issue and can correct course, the opportunity for good is tremendous. 

Tied to this question are the questions in tens of thousands of BC patients' minds: did HRT mess with me? Were we to discover that HRT is safer than once thought, it could perhaps change the inner narrative from "HRT likely caused my cancer" to "HRT likely limited my cancer." There's no way to know for sure, but an accurate assessment of this therapy is critical in evaluating "coulda, woulda, shouldas."  Lilac, I share your questions about previous treatment. I used progesterone creams intermittently for ~3 years prior to my dx. But until I get more evidence, I cannot seem to say whether this hurt me or helped me. I'm perfectly willing to lean either way but I just don't have definitive evidence yet. But I do believe that evidence is out there, and I covet it, both for me and for you. The regimen that you used appears to be of a very safe profile. That said, I'm sure that other factors figure in. For example, my mother died of lymphoma at 70. My sister (50) is in treatment for IIIa melanoma. Though genetic testing has not yet been suggested for us, my "gut" tends to tell me that I may be at higher stage had I not done what I did hormonally. But I cannot prove or quantify it, of course. Ariom, you have a family history of bc. You have no regrets about refusing HRT. You may well be one for which it may not be safe. -Individual risk/benefit. Certainly that is a part of all this. We can study until our eyes fall out but ultimately, it seems our "gut" is our best compass. And I bless you both and wish you the very best in your journey as well. 

I know that the initial post is long and dry to many. But it will be here if anyone wishes to explore with me. Also, I hope that I've been efficient enough in sharing my reasons for it in the first place. Grace and peace to all and have a great Labor Day!

Kay



   

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 1, 2014 10:37PM - edited Sep 1, 2014 10:38PM by satori50

This Post was deleted by satori50.
Dx 11/18/2013, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes Surgery 2/11/2014 Lumpectomy: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 1, 2014 10:39PM satori50 wrote:

I'm so glad I've found this forum. Honestly, just reading through it helped me through the most uncomfortable parts of my experience. I'm so grateful for all of you, truly.

I'm not certain if this will help either. I'm so new to breast cancer that I have really no idea how to process what you've written, but the parts of it that I do understand resonate with my experience. I was diagnosed with DCIS last November and had bilateral mastectomies in February of this year. I am 3 years post-menopausal and like my mother and grandmother, never had any of the classic symptoms... until after my mastectomies. Since then, I have gained 17 lbs., 9 of which I've gained in just the past week. The places where I've gained weight is very different too; much of it is upper abdominal fat which I have never had before and is extremely uncomfortable. The hot flashes are infrequent, but having never had them before, I've deemed them horrible. And, my insomnia worsened.

For 25 years, I've struggled with both hypothyroidism and trying to get a doctor to treat it. So I've gone untreated for that long. On the recommendation of friends, I was finally able to find an MD who practices Functional Medicine. I've certainly gotten an education in the two months I've been seeing him weekly. I took a very new blood test called Oncoblot that purportedly detects micro-metastasis of cancer and can also detect the originating tissue. Because of this test, I discovered that I have sub-clinical endometrial cancer. So far, my gynecologist is unconvinced because it hasn't manifested visually yet.

What you describe is what Functional Medicine addresses. These doctors treat hormonal imbalances with bioidenticals and supplementation. Although there's a possibility that I may have entrometrial cancer, my doctor and I have decided together to go ahead with hormonal therapy because I am so uncomfortable. Further, I figured that if estradiol treatments exacerbate the uterine situation, at least something can finally be done about it.

Finally, my functional medicine doctor explained to me that research is showing breast cancer may be caused or affected by hormonal imbalances. I hope my two-cents have been germane. Below are links to more info and doctors who practice Functional Medicine.

Dx 11/18/2013, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes Surgery 2/11/2014 Lumpectomy: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 2, 2014 05:40AM Alpineartist wrote:

Satori, sorry for all you've been through in the last year, but glad you have also found comfort here. 
Like you, my mother had few menopausal symptoms, and mine were minimal until after surgery when they became nearly debilitating. 
Your symptoms appear to be those of classic estrogen deficiency, right down to the weight distribution model. Do you have pain in your joints? This is a little-known but important estrogen loss symptom. It is actually in the tissues surrounding the joints. Many women never discover that estrogen loss is the culprit here and endure surgeries and toxic drugs  to mitigate the pain. But even if they understood the real problem (estrogen loss) I don't fault them for not addressing the source of it, with estrogen's current reputation (which, as mentioned before, appears to be slowly changing with new data).

That said, I'm familiar with your suffering and understand your decision to use hormones to treat, despite possible risk. It's a quality-of-life decision. Similarly, many women on Tamoxifen and AIs elect to stop taking them because the loss of estrogen is so uncomfortable. They weigh the heightened risks against the suffering and do what they must to live their lives. We all have different risk/benefit balance points. 

Oncoblot is news to me. Thank you for sharing it. I can't wait to learn more about it. 

Something which may be news to you: a newly approved product for menopausal symptoms which may have a more favorable safety profile for bc patients than BHRT has some of us talking at this forum thread
Great short week, all.
Kay

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 2, 2014 11:46AM satori50 wrote:

Thanks for your insights, empathy, and support, Kay!

Yes, I have had joint pain for almost a year. I never associated it with estrogen deficiency until an inkling of that connection came when I noticed, since I began estrogen therapy about 2 weeks ago, my bothersome hip and knee joints have not been as painful. I'm just wondering why the sudden and excessive weight gain in just the last week. I'll see my doctor about it tomorrow, and at the same time, will ask him about his thoughts on Bazedoxifene.

Also, Oncoblot has a website; just Google Oncoblot (the product) or Mor-Nuco Inc. (the company). 

Dx 11/18/2013, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes Surgery 2/11/2014 Lumpectomy: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 2, 2014 08:12PM Sisterhood wrote:

I was diagnosed with DCIS in November 2013.  Had a double mastectomy 03/27/14 and reconstruction 6/12/14.  Surgery was no big deal for me either time.  Took only Tylenol for pain and only one day, very thankful for that as my husband committed suicide and funeral was 03/01/14.  I needed a pass as I was still deep in the grieving process.  I went through menopause at age 37 and am now 62.  Took HRT since age 37 and up until the time of diagnosis.  After quitting the hormones, I began to have terrible night sweats, sleepless nights due to the joint pain.  When I got up to walk, limped until I took a few steps because of the pain.  Saw my OBGYN and practically begged to be put back on the HRT, but with no luck.  My cancer was Stage 0, clear margins and all tested lymph nodes negative.  My oncologist said that because I did a bilateral mastectomy, I didn't even have to take aromatase inhibitors even though my cancer was estrogen positive.  I have also searched the internet for any hope of other studies done to discount the 2002 reports.  Not many out there.  Here's my question, my mother is 91 and took HRT for at least 30 years and quit when the 2002 study came out.  She has never been diagnosed with breast cancer so she is a contradiction to the findings.  I am not convinced that HRT caused my cancer.  I know there are hundreds of women that will disagree. So glad to have found everyone's posts on here, very informative and comforting to read actual, real life experiences. 

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Sep 3, 2014 05:34AM Alpineartist wrote:

Sisterhood, my heart goes out to you. No one should have to go through all that you have in one year. But I, too, am thankful that you "got a pass" on post surgery pain. But I'm sorry that you're hurting again now.

On your questions about whether HRT contributed to your DCIS, you've touched on the sisterhood out here of those of us with the same questions. And as I've mentioned, only an accurate look at HRT (updated now and then with new data from new studies) can help determine what really happened. Not only that, but help those of us with debilitating symptoms know how to proceed. 

Your profile (without knowing some things) would appear to me to be low-risk enough to at least consider carefully returning to supplementing. Again, it's all about current suffering and the quality of life balance that each woman must choose. If your doctor will not work with you, you have options. There are doctors who will work with DCIS/bc patients. This, of course, is your choice and yours alone, so be fully informed and take full responsibility for your choice.

Another option is the drug mentioned above, called Duavee. It is a two-drug combo daily tablet. Half is CEE (the estrogen you may have been taking before) and the other half, instead of the dangerous MPA (synthetic progesterone) is Bazedoxifene, a new estrogen modulator that, unlike MPA, protects the uterus and shows promising ability to protect the breast. This drug was only released to doctors in early 2014, so your doctor may not yet know of it. The estrogen in this compound has proven to reduce risk in women your age even without the Bazedoxifene. (WHI Estrogen only arm) but with the added actions of Bazedoxifene on breast tissues, it appears a good choice for bc patients with severe menopausal symptoms. You may want to ask your doctor about it.

It's been mentioned on these pages before that one woman can have a perfectly healthy diet, lifestyle and family profile and end up with a bc dx. Another will live with little regard to health, even neglecting her health, and never be flagged. It can seem like a roll of the dice. But I still trust that in science, what seems to be random or contradictory is simply a lack of facts. Once those facts are filled in, a consistent picture emerges. HRT is only one of the factors by which we assess risk (either for the future or in the past). And I believe that the truth is in the details. In the decade since the WHI and MWS, new studies and data are changing the landscape of HRT and causing experts to re-think the safety of this therapy. 

Meantime, we can support one another as best we can, and try and keep up with these trends, sharing when we can. Please keep us posted on your progress and decisions.

Grace and peace,
Kay 

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 3, 2014 06:50PM Sisterhood wrote:

Thank you for your very helpful information.  I am excited to hear about the new drugs and I certainly will try to find a doctor that would support that option.  When I explained the extreme joint pain that I associated with lack of estrogen, my doctor said that she wasn't aware of the connection.  After reading hundreds of posts from women taking AI, I am convinced that I was correct in my assessment.  I don't want to come off as thinking that I am smarter than science because I certainly am not, but we are women living through the journey and sharing experiences, which to me is so very valuable.  Please keep your posts coming, I appreciate the time you must be devoting to your research.   

Regards,

April

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Sep 3, 2014 07:39PM 208sandy wrote:

HRT after any cancer diagnosis - sorry, can't buy it - just asking for trouble - can't believe any doctor would prescribe the meds anyway.

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Sep 4, 2014 03:48PM Alpineartist wrote:

You're very kind, April. Here's to a better year for you. And Sandy, this thinking may just be haywire. If so I really am the first to want to know it. But these studies stick in my craw. And they are just a few of the many I've seen like them, including those done on bc patients, (who desperately need more options right now). If anyone has studies that refute them, I could put this issue to rest. Till then it is what it is...

Health to all, 

Kay

 

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 4, 2014 05:54PM Sisterhood wrote:

Hi Kay, here is a report that I found that may be informative and hoping that it is not a duplicate of the passages cited in your post. It is a lot of reading and much of it is over my head.  You have a talent for writing and seem  to be able to decipher the research into something I can understand, and I thank you for that.Smile

 http://www.breastcancerchoices.org/hrt.html

Sincerely,

April

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Sep 4, 2014 07:04PM Sodie1017 wrote:

I started having hot flashes on my 49th birthday. My mom never had menopausal symptoms so I was surprised when mine kicked in. I put up with the constant sweating, memory issues, and irritability for a year. When I couldn't stand it anymore, I saw a gyn who put me on Prempro. 4 1/2 years later, just when I was going to wean off of the meds, I was diagnosed with BC. I've read reports that there is no difference in the rate of BC in women who were on HRTs for less than 5 years and those who were never on meds. I asked my BS if Prempro caused my BC and she said no. My biggest risk factors, in her opinion, were my dense breast tissue and cysts.  

I had to quit Prempro cold turkey and the hot flashes hit within a week. They are tolerable during the day, but miserable at night. I can't think of the last time I slept through the night. I know that diet and exercise can help, but I developed plantar fasciitis prior to the PS releasing me to get on with my life. I've been in PT for months so exercise is non-existent for now. 

I was in DC last weekend visiting my daughter. For once, my foot wasn't killing me so we walked a lot. I slept much better and had fewer hot flashes. Bottom line, I'm ready to ease back in to exercise and hope to get some relief. If not, I'll see what my doctor suggests and I'll try to read all of these articles that are posted. :)

Thanks for starting this thread. 

Dx 2/28/2014, LCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+ Dx 2/28/2014, DCIS, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Surgery 4/2/2014 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Sep 7, 2014 09:19AM Alpineartist wrote:

April, you have found some of the studies done on bc patients that I mentioned, not posted here yet. These studies contradict larger studies which note a small rise in risk such as the Women's Health Initiative (WHI) 2002. (It's interesting that that rise in risk was not large enough to be what they call "statistically significant" but because of its size, and perhaps because it regarded breast cancer, whose treatment is so onerous and whose numbers of those diagnosed are growing so quickly, it attained clinical significance through media attention quickly and has changed hrt management for a decade.) These studies in general, to the contrary, state that there is little or no added risk in adding hrt for at least shorter periods of time even in bc patients. There are various reasons for these contradiction in results.
 
One is the type of HRT used. (Sodie, Prempro is the type which the WHI used, which is connected with slightly higher risk. But you're right in that other studies [some in April's link with bc patients] have shown less or no added risk even on this drug.) Another is the age of the patients studied, and/or how far from menopause they were when they started HRT. Another: how long they took HRT. You get a wide array of information when looking at this through any of these prisms. But the overall picture is this: 


The estrogen/breast cancer relationship is not a slam dunk. The more you study smoking and its effect on lung cancer, the more clear the relationship (and then the cause) becomes. The more you study estrogen and its effect on breast cancer, the more unclear it becomes. Yes, there certainly is a connection between estrogen and breast cancer risk. Getting periods earlier in life (early menarche) and having them longer in life (late menopause) are associated with higher risk. Estrogen would seem the culprit there. But after menopause (when estrogen levels drop) risk still seems to rise for several years anyway (in those who haven't taken HRT). This is a contradiction.  
We know that agents which target estrogen like Tamoxifen reduce risk. Wouldn't this mean that estrogen is the problem? But when tumors become "resistant" to Tamoxifen, guess what compound has been used to take over? Estrogen. Even low doses, after estrogen receptors have been damaged or lost, can be a powerful cancer-killing agent. We must try to avoid the dangers of confusing correlation with causation.


Estrogen is one of the most complicated and mysterious compounds in the human body. We'd like to think we understand it better than (I believe) we do. As in many other areas of science, details matter. Time, compounds, and even regimens. It is a very complicated task for any one woman to determine whether HRT was (or would be) the thing to cause her bc risk. Again, this is why I started this conversation. But in the course of the conversation, another reason has come to light. Whether a prescription that we took, or some cream that we ordered online, or anything else we did in good faith and sincere effort to alleviate symptoms and live better, we need to be ok with that. And we need a little hug now and then for at least trying. God knows there are innumerable women out there who trash their health and think nothing of it. Some get off scott free, others don't. Through all this study, one thing is certain: friendship and community heal. Heal the breast, and heal the conscience with regard to the past. And if nothing else gets done here but that, we're doing all right. ;)

Once again, thank you for all the responses. Busy time ahead in production at work. Will stop in when possible. Great Sunday!

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 10, 2014 06:46AM - edited Sep 10, 2014 06:47AM by Alpineartist

Overtime in the studio, but still hungrily studying the studies (lol) at night and early mornings. This Medscape piece posted today caught my eye. It gives partial answers as to why medical studies of all kinds can contradict one another and even be completely wrong. The way the patients are chosen, the way the data is expressed, on and on. Then there's who pays for the studies. Conflicts of interest here play a role, as well as well-meaning scientists themselves doing their best to prove a theory in order to help others (when real science is to simply prove the truth). It's a bit overwhelming.

At times, I begin to agree with the subtitle of the last paragraph, "Why bother?" But my resolve is strengthened when that paragraph (and the article) ends with: 

As Dr. Fiona Godlee summed up in her BMJ editorial on evidence-based medicine, “[it’s a] flawed system but still the best we’ve got.  


Lol. True. Carrying on....

In the comments section, this then caught my eye. 

Dr. Bonnie Camo| (

At my medical school graduation ceremony in 1978 we were told that half of everything we had learned in the last 4 years was wrong. However, the problem was - it wasn't yet known which half. 

Nice to start the day with a chuckle. Done reading for now -time to make the donuts. Good Wednesday, all!

Kay

(edited for typo)

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 10, 2014 02:17PM Heidihill wrote:

another study... http://www.webmd.com/sex/birth-control/news/20140801/some-birth-control-pills-may-up-breast-cancer-risk

recent use of high estrogen oral contraceptives ups bc risk in women under 50 by 50 percent compared to former or no use.

women under 50 already have enough estrogen, I suppose, while for those on long-term antihormone therapy, it may be another story.

http://www.ascopost.com/issues/june-15-2011/paradoxical-result-tying-estrogen-to-reduced-risk-of-breast-cancer-is-consistent-with-laboratory-data.aspx

Finding out more about how estrogen functions in cells that have been deprived of estrogen for years will provide additional tools for developing therapeutic paradigms, Dr. Jordan said. He cited the Study of Letrozole Extension (SOLE) trial, which is comparing breast cancer recurrence rates among women who have completed 4 to 6 years of adjuvant endocrine therapy with a SERM and/or aromatase inhibitor and were then randomly assigned to letrozole either continuously or intermittently with 3-month drug holidays every year for 5 years. “Let’s see if the woman’s own estrogen, like little pulses every 3 months, can improve recurrence rates in the intermittent-letrozole arm compared with the continuous-letrozole arm. That may just drive antihormone therapy more,” Dr. Jordan said.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 11, 2014 07:42AM Alpineartist wrote:

Heidi. your two links further illustrate the seeming paradox of estrogen's actions on breast tissue, and our lack of full understanding on this. And you are right. After long-term hormone therapy, estrogen seems to help instead of hurt. More can be found here.

On the oral contraceptive study, Breastcancer.org posts a very instructive article. It states that studies like this have mixed results and that even these results, in absolute terms, mean that in most premenopausal women, their normal risk of 2% goes up to 4%. (Sounds a lot better than the 50% figure in the headlines, doesn't it, lol?) Nonetheless, both are true.
But back to how this result relates to our conversation:

The estrogen used in this study (ethinyl estradiol) is of synthetic origin and not commonly used in hrt preparations. It is considerably more potent than hrt preparations to begin with, and the highest dosage used in this study was extremely high. Only 1% of the study cohort used this strength. This should be considered. As I learn more about this estrogen, I will seek to determine just how "estrogen" it is. You ask, "what do you mean, determine if it is estrogen?" Well, there are synthetic hormone preparations out there that differ so much from the human hormone molecule that they cannot be used normally in human tissue and things go wrong. Then, when we read studies and articles which don't differentiate the two, we get confused.

MPA is a good example. Medroxyprogesterone Acetate. It's the pro in Prempro. In some studies and articles it is called progesterone (the human molecule). It is not. It is a synthetic progestin. Both are progestagens. Confusing enough, right? But MPA's actions on human tissue, especially breast tissue in hrt preparations, is apparently quite different from progesterone's. Thus, it is critical that the two compounds be identified correctly in order for data to be handled accurately. The problem is that literature authors don't always know that there is a difference, so they confuse the two, and in so doing, confuse the data. But it's all we have so diligent researchers have the extra burden to identify compounds and their respective properties in order to know what we're really dealing with.

To be brief, in order to know if estrogen and progesterone are good guys or bad guys, we need to know when, in the literature, we're actually dealing with them or their cousins who don't fit into society as well because they are, in fact, aliens.  It's complicated, but this is what seems fairly clear at this point: (study links available)

Estrogen can proliferate existing lesions. CEE (conjugated equine) somewhat, E2 (estradiol) more. But a few things can make this not happen after all, such as: 

CEE introduced to women 5-10 years post-menopause (or anti-hormone therapy) overwhelms dead/dormant receptors and causes cancer cell death (apoptosis).

CEE alone ok, but proliferates uterine lesions. Thus, a progestagen must be added to protect the uterus.

CEE with MPA arrests cancer development in uterus. Not so much in breast. In fact, risk rises slightly in breast.

CEE with NEDA (another synthetic), the same.

CEE with Micronized Progesterone (human molecule): cancer arrest in uterus. Safer for breast than MPA/NEDA. This compound is not common.
CEE with BZA (bazedoxifene, a 3rd generation SERM like Tamoxifen) seems to add no risk to uterus and may protect the breast. New drug. Some human studies, but no true trials to date yet.
E2 (estradiol, human molecule) is more powerfully proliferative than CEE in ways. 

E2 with Progesterone (not progestins): E2's ability to proliferate is reduced, sometimes entirely, and sometimes risk is even lowered instead of raised. This is the combination that I have been most interested in, obviously. My first post cites a few studies done on this combination and their results.

Transdermal (applied to the skin) progesterones may be inconsistent in dosage - Oral Micronized Progesterone is preferable.
Progesterone has its own paradoxes. It primes human tissue for proliferation. But it causes this same proliferation to subside, and later die off. This appears to be part of the monthly cycle. Thus, it is not really a paradox. It raises proliferation (and risk) as the body readies for pregnancy, but if no pregnancy occurs, it is programmed to cause apoptosis on schedule. But studies which note its ability to help estrogen proliferate only may be missing the end of the movie. They are leaving the theater with progesterone as the villain when it may not be at all.

Premenopausal women who have trouble conceiving because of a deficiency of progesterone are, shockingly, 5.4 times more likely to develop breast cancer and 10 times more likely to die from it if so. Progesterone must play a very important role in protecting the premenopausal breast, and if its monthly apoptotic effect is missing, balance is lost and trouble occurs. (Perhaps like the high-dose estrogen group in your study, Heidi.) Could it be that it is not so much the simple presence of estrogen in these women, but its balance with progesterone (not progestins) that causes the trouble? 

To be more exact: all of these preparations are synthetic (synthesized). Plant-based (natural) or otherwise, isn't that important.
What seems to be important is the closeness to the human molecule, and the body's ability to recognize it as its own.


Again, I have data to back these statements up. Yes, estrogen proliferates nascent cancer cells. Yes, progesterone helps. But there's far more to the story. Both of these characters have alien imposters in the picture who they are often confused with, and neither may be a bad guy so long as he is allowed to play out his entire role in balance with his partner. So when reading the literature, I hope this will help. Gotta run. Great day!

Kay
Ps: Satori, thinking of you this week. What did your doctor say about your sudden weight gain? 
 

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 11, 2014 10:39AM Heidihill wrote:

Thanks for the explanations. The study did say low estrogen contraceptives did not raise risk of BC. Whether it's the dose or the type of estrogen that makes the difference is the question. Have to look at the study again.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 12, 2014 05:21AM Alpineartist wrote:

Thank you for your posts, Heidi. Have a great weekend. Health and peace to you,

Kay

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 12, 2014 05:27AM Alpineartist wrote:

My posts are a bit long. Sorry. But there's so much data swimming around in my head that it feels good to put it down somewhere, lol. Maybe, just maybe, as time goes on and more data are found, all these words will make more sense. And what's swimming around in my heart is the desire that women like us could find better relief than is currently available to us for the slings and arrows of menopause. And to be able to use it with confidence. It's been said that knowledge is power. This is all I wish for.- More power to us.

Great weekend, 

K

Oncotype DX DCIS score:13, VNPI score: 5 Dx 6/12/2013, DCIS, Right, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+ Surgery 6/12/2013 Lumpectomy: Right Dx 6/28/2015, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR- Surgery 8/18/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 1, 2015 08:39PM sspc wrote:

Hello,

I must say I found your post interesting. I was diagnosed 4 days ago with DCIS. Like you, stage 0, non invasive. I've been reading a lot and I'm finding out that there is controversy that this is even cancer. It's been discussed that, as you think, estrogen does not cause DCIS but perhaps mammograms do. I read that DCIS did not exists before mammograms which means either women had it and didn't know it and went untreated and lead healthy lives or the use of mammogram contributed to the now very high numbers of women being diagnosed with it.

Anyway, I was told to go off my HRT and I'm miserable, so hot and cranky. My question for you is, how did you know that your DCIS had estrogen receptor sites?

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May 2, 2015 09:11AM redsox wrote:

DCIS definitely existed before mammograms but DCIS and other stages of breast cancer were detected only when symptoms appeared. Symptoms usually did not appear until the disease had progressed to invasive breast cancer, so the rates of diagnosis of DCIS were much lower before mammography. DCIS is one step on a spectrum of abnormalities of breast cells that run from types of hyperplasia through stages of invasive breast cancer.

http://www.breastcancer.org/symptoms/types/dcis/diagnosis

Progressing along the spectrum through all the types is not inevitable. Some women have hyperplasia and never move on to anything worse and some have DCIS and never move on to anything worse within a defined time period. The problem is that despite extensive attempts to identify which women with DCIS will progress to IDC, the ability to identify them still has only limited success. 

HRT use is strongly associated with the development of DCIS and IDC. That discovery was unexpected and the subsequent decrease in use of HRT has led to a dramatic decline in the number of women diagnosed with breast cancer, including DCIS. Any competent physician would insist that a patient diagnosed with DCIS end use of HRT.

Usually path reports for DCIS will include the ER and PR status.


 

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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May 2, 2015 09:56AM ballet12 wrote:

Hi sspc and red sox,

As usual, red sox, your summary of the data is succinct and compelling. As to whether DCIS is cancer, that is a semantic question.  It is treated as though it were cancer, so for many women (most women) it is thought of as cancer.  It is, at minimum, a pre-invasive abnormal state, and at most, cancer, albeit noninvasive.  Whatever one calls it, it needs to be taken seriously. The risks of recurrence are higher when women either don't treat it, or just have a surgical intervention, without additional treatment (radiation and hormonal treatment). Some women, with low grade DCIS and/or small amounts of DCIS, have gotten second opinions about their pathology, and been told that they are at low risk of recurrence. 

It is risky to continue hormone replacement therapy after a diagnosis of DCIS, as there is a relationship between HRT and DCIS (even if one's own "hormone receptors" for the DCIS don't indicate that they are estrogen receptor positive).  I was actually a patient of Dr. Susan Love, the breast surgeon, back in the 80's to early 90's, and she already spoke to me about the relationship between HRT and breast cancer, long before the studies were done.  When I was diagnosed with atypical ductal and lobular hyperplasia in the mid 90's, I was told that I should never take HRT, tempting as it was.  At that time, we were told that HRT reduces the risk of heart disease and dementia (now both debunked), in addition to alleviating symptoms of menopause. It is possible that I saved myself from invasive breast cancer by avoiding HRT, although I did do a few months of fertility drugs.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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May 11, 2015 08:11AM dtad wrote:

I was on HRT for 6 years prior to my breast cancer dx. My BS told me that women on HRT that are dx with breast cancer seem to have a less aggressive cancer.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 11, 2015 10:49AM have2laugh wrote:

Interesting conversation and just wanted to point out for some women menopause symptoms can be "debilitating" as the author of this original post described her situation. Not sure we know all there is to know about HRTs as research and medication formulas are ever changing but I do think one needs to weigh the risk and benefits for their particular situation. We are all different and for some this transition can be quite difficult. I am not there yet but I would say it is like so many other decisions we have made, need to consider all pros and cons.

Dx 1/28/2014, DCIS, Left, 2cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+ Surgery 3/5/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 3/12/2014 Lumpectomy: Left Radiation Therapy 4/9/2014 Breast Hormonal Therapy 6/5/2014
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May 11, 2015 04:04PM dolfin wrote:

my 2 cents.....I have estrogen dominant issues and think I am experiencing some peri-menopausal symptoms. I can not take hormones because a) I'm concerned this hormonal imbalance I already have will be made worse by hormones like the pill or Mirena (IUD) and perhaps progesterone therapy and b). I also get cyclic related migraines with aura so this puts me at risk of stroke so no go.

I have looked into naturopathic alternatives such as Maca root and will stay away from phytoestrogen products (soy,tofu, black cohosh). Sometimes antidepressants can help with perimenopausal symptoms/menopausal symptoms and clonidine but I'm still doing my research on Maca to see if it may be of benefit to try.

Not trying to be pessimistic sounding in relation to myself but I feel like breast cancer will be inevitable with me. I still don't trust the biopsy results I received although the radiologist does feel the sample is concordant with what was found on my diagnostic mammo with magnification views. This has certainly been a huge wake up call for me.

I sometimes wonder why this transition to menopause for people can't be better studied and better treatments made available, and not to forget the people who came into menopause surgically or due to chemo etc. or having side effects of chemo meds.

There's got to be answers for us all I just don't know what it is.

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May 13, 2015 12:16AM bratscher wrote:

and my 2 cents: last June I started taking micronized progesterone to help with perimenopausal crap, and it was a godsend - I felt so much better. In October, a routine mammogram led to a diagnosis of tiny (2.5mm) DCIS, and every doctor immediately insisted I stop taking progesterone. Flash forward to now: lumpectomy 100% successful; radiation deemed unnecessary, tamoxifen attempted and declined due to side effects, currently on no adjuvant therapy. And I still am not allowed to take progesterone! The gynecologist who initially prescribed it is confident it did not cause the DCIS (of course), but my primary care doctor plus every oncologist on my team insist that I must not take progesterone. I wish I could go back to taking it and feeling like myself again.

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May 13, 2015 09:33AM - edited May 13, 2015 09:38AM by BUNKIE10

sspc - I too am newly off HRT and miserable. Dizzy, fatigued, shaky etc. I guess since it has only been a week it will get better. I was on HRT for almost 20 years. Stopping cold turky is awful. I had DCIS in 2012 and kept taking the HRT because it was helping with my bone issues from being on prednisone. The idea was to wean off in a few years. Well the makers of my Cenestin stopped making the drug. What is left are patches that I am allergic to the adhesive and pills that are not made of yams etc like I was on. Because I had a hystorectomy in 95 I was only on estrogen.

Just wondering how long it takes for the worst of the symptoms to calm down or do they stay bad.

Dx 6/11/2012, DCIS, Stage 0, Grade 2, ER-/PR- Surgery 7/23/2012 Lumpectomy: Left Surgery 8/8/2012 Lumpectomy: Left Radiation Therapy 10/4/2012 Breast

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