Polite Explanations are Welcome....
Comments
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I don't think that is a stupid question at all.
The question for many is not about progesterone necessarily but more one of whether or not the various hormones we produce are balanced to meet our optimum health. The thought is that possibly too high a level of one hormone (estrogen) and not enough of another (progesterone), result in an "imbalance" that ends up being the cause of the problems we have.
A.A.
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What I find really interesting the levels in my case. It would seem my PR levels were all over the place when tested. The bit taken for the diagnosis was 75% PR, but the lumpectomy itself was only 35% PR, and to make it more off the wall the Oncotype test came back PR negative. It just has me wondering why.
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Kira1234
You are talking about the % of progesterone receptors in your tumor, which is different from the level of circulating progesterone in saliva or in the blood.
There is a discussion about the topic in this thread:
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Apple: I had my hormones tested through both saliva and blood tests by a doctor who specializes in bioidentical hormones. I was low in progestrone and DHEA and this was compounded for me along with changing my premarin to a natural estrogen patch which bypassed my liver. I was feeling wonderful, then the bc dx and I was taken off all of them except my thyroid meds.
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good luck with all this.. thankfully plenty of research has been done about stopping estrogen production within one's own body.
Tho extraordinarily long - this is a good site to read and explore if you are interested. I'd click on the printable pdf to read in entirety if you do that sort of thing, rather than navigate the web presence of citings, references and such.
http://theoncologist.alphamedpress.org/content/9/5/507.full
peace and love, apple - aka, Mary Magdalen
Diagnosis: 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+ -
I'm very sad and disgusted, but not surprised, to see on another thread that the medical providers are still not being up front and clear about the devastating impact on sexuality that is so often the result of chemotherapy. It is even worse to see other patients sweet-talking and downplaying and participating in the failure to be honest with patients who are considering treatment.
Ten years since my medical providers were flat dishonest with me, and it continues. It is a complete violation of the principle of informed consent, and every last one of them should be held responsible for it.
AlaskaAngel
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A.A.: When I had my complete hysterectomy 20 years ago, the gyn told me absolutely nothing other than I would feel so much better because my heavy periods would disappear. I went blindly into it. He never told me of the sexual issues and other health issues that could be possible with removing both my uterus and ovaries. All I had at the time was fibroid tumors which they now remove with laser therapy. It's all water over the dam at this juncture, but I still live with thyroid problems, and my sex life was never as good as before the surgery. As a result I'm now very wary of anything a doctor wants to do to me, and I do my own research before I make any decisions.
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AA,
Again, you undermine your argument by making the leap from some medical providers offering substandard treatment to suddenly spouting forth that all medical providers are then suspect.
Likewise, you make the same leap by stating that all patients are like little sheep fed to all of these totally substandard physicians.
Again, I'm sorry you didn't receive the treatment you wished ten years ago. But again, that doesn't mean that trolling through the threads on BCO to find other women who might have an issue with her physician, however small, is logical or even rational.
Black and white thinking really doesn't get you very far and can be quite disabling to continue to obsess about it. You didn't get the treatment a decade ago that you think you should have, but life goes on, you know?
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AA, it's interesting that you are really appalled by the downplaying of sexual side effects due to chemo, since OA also causes huge sexual side effects. What is the difference to you? To me, chemopause was temporary, but OA would be permanent.
I realize that chemo-related sexual side effects are permanent for some, however.
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Digger...I had the same thought! The way she obsesses, I guess it's time for her to have some other form of treatment! But then again, she is so suspect of physicians and medicine, that I doubt she would consider seeing a therapist. Very sad.
The way she speaks, you'd think it was divine intervention that some of us actually were pleased with our care and are, thankfully well..... Imagine, she's ten years following active treatment and still upset....Very, Very, Sad...that she's in this kind of emotional pain.
I applaud you for posting, Digger! Her antagonism towards physicians could negatively affect other sisters' active treatment making decisions. I guess, we will have to counter her negativity and set the record straight. Sisters....By all means, get a second or third opinion about your treatment options, but don't conclude that most doctors are substandard. It never ceases to amaze me why any physician would CHOOSE to become an oncologist. I think they are extraordinary people.
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Alaska Angel,
I've been away from these boards the last few months but I was delighted to stumble upon your excellent reasoning skills. It's so comforting to find a mind open to exploring new ideas. I hope you will continue posting as there are many of us who lurk and enjoy hearing fresh takes on information.
Tis a pity the NCCN Guidelines are based on such limited consensus. My study group has looked at the historical shifts in decision-making for treatments. They are all over the place. One wonders what will be standard of care next year. Unfortunately, the oncs are bound by the guidelines to make recommendations. Although, the occasional onc will let you know (off the record) that the guidelines are subject to change like hemlines.
Thank you again. I may not stop by BCO for a while but I'll look for your investigations.
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Lucy...the guidelines are a starting point for treatment making decisions. It is always wise to look at several years worth of guidelines to look for trends. However, to applaud AA for her excellent reasoning skills? I find her reasoning skills insulting to physicians and patients alike. I was told what the NCCN guidelines were for my type of cancer AS WELL AS ALTERNATIVES....AND, they were told to me ON THE RECORD.
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VoraciousReader,
My study group has dissected the guidelines going back to the the beginning of guidelines and the standard of care going back one hundred years. We have several PhD researchers, veteran cancer investigators and a medical anthropologist who has professionally tracked cancer treatment trends for 40 years.
I hope you will understand but I find it offensive to speak of one of our breast cancer sisters as if she is not in the room. It is not only unkind, it is most hurtful to the person trying to hurt. I hope you can understand that as I see how pained and frustrated you are.
I'm not sure why you find reasoning insulting to anyone. Any reasoning person enthusiastically welcomes another's reasoning because it contributes to the ongoing information pool. Only in totalitarian states is thinking for yourself ridiculed. I'm sure you would not like to argue that perspective.
Best of luck on your healing journey. We all need to find our own way and support each other even if our paths diverge. I hope you find peace.
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lucy88: That was a refreshing post...pretty much telling it like it is. I have physician friends who "off the record" have told me that I should do my own research because conventional medicine is based on guidelines set down by the FDA and they cannot deviate to the left or right from "standard of care".
A welll known cancer center indicated they were willing to do some treatment for me "off protocol" as they called it, but then in the end, they gave me the runaround, and tried to switch me to a more conventional treatment which I declined. It was disappointing, because I wasted a lot of time believing that I was going to get the treatment that was best for me.
I've said it before, and I will say it again. BE YOUR OWN ADVOCATE. Do not go blindly into treatment without first checking out all of your options and the studies that back them up. All doctors are certainly not suspect, but all doctors don't always have your best interests at heart either. They mean well, but many are mired in their own paradigms.
If I had been a little less trusting of my doctor when I was offered my hysterectomy, I would have done further research and realized that I had other options besides a complete hysterectomy, and I might not have had to deal with bc as a possible outcome of the estrogen dominance it created in my system when I was given premarin to offset the SE's of losing my uterus and ovaries so suddenly. The effects of that decision are lasting and permanent!
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Lucy...So, YOU find ME insulting to sisters? Have YOU read some of AA's posts? Specifically the one where she said that the reason why there are few new treatments or alternatives for BC patients is because of "consumer demand" for chemotherapy????
SHE IS INSULTING TO THE SISTERS AND TO THE DOCTORS. AND YES, I AM YELLING SO THAT YOU AND EVERYONE ELSE CAN HEAR.
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Last evening I watched The Bachelor on TV...hahaha....some mindless entertainment. The women on there reminded me of some of these posts and the way women go back and forth at each other, but this site is not for entertainment, it's serious business.
I think sometimes people just have to agree to disagree and move forward...why get so upset...life is too short and you aren't going to be able to change another's view to suit your own most of the time anyway.
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Hillk,
Actually, that is incorrect. When a patient refuses recommended guidelines, that refusal is documented in the medical chart, and the physician is off the hook. A physician may go on record, repeating the recommendation to doubly document his or her recommedation. Often a physician will refer a patient to another oncologist who will repeat the same recommendations, triply insulating himself from litigation.
Once a patient has established herself as "noncompliant" the physician has no legal exposure to adverse outcomes he or she was not party to. Even not showing up for appointments is construed as evidence of noncompliance by patients.
You can look this up.
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I also don't really think that women are that swayed by what they read here. Most women know what they are going to do and are looking for reassurance that it is the right decision, whether their choice is alt or conv. I've never seen anyone really truly on the fence - most people are pretty firmly leaning one way or the other and are looking to confirm their beliefs. So the idea that these threads are going to lead some unsuspecting person down the wrong path is something I just don't worry about.
In my experience, the people that do the least research on cancer are the ones who opt for conv treatment. (I know that doesn't apply to all conv ladies, me included. But if you have a woman who is just taking the recommendations of her doctors without really looking into it, it's most likely a conv woman. I've met ladies who didn't know what kind of chemo they did - just showed up for it.) Alternative ladies tend to go bonkers with the research.
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lucy: Right again...I had to sign off when I elected to forego radiation. If I have a recurrence I wouldn't dream of holding anyone but myself responsible. It was my choice...either way.
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Lucy88, I don't suppose you'd care to share more about this "study group" of yours, would you? Who are they and what, exactly are they studying? Any chance they're a political activist group? It sounds a lot like Breast Cancer Action or the EWG (Environmental Working Group) or some of the more vocal anti-conventional treatment for-profit groups, all of which are extremely biased and agenda-based. Of course we all have our own reasons for what we do, but junk science groups like these more often than not have goals that aren't directly in support of real women dealing with a very real disease.
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The standards of care do not include the essential clear statement to medical providers that they must inform patients of the full range of common adverse effects of treatment, and that they must also inform patients about common medically established available alternatives.
It is precisely because medical providers have a reputation for providing real "care" that is based on researched medical knowledge and patient trust, that patients believe their provider has the integrity to be straightforward about the full range of choices and ramifications of treatment. In situations of a crisis diagnosis and exceptionally complicated forms of treatment, that trust creates a situation where the patient is less likely to know what questions to ask, or to have the confidence to ask them. Nevertheless, the patient has the right to know and the provider has the responsibility to take the time to provide the information.
The more respectful and trusting that a patient is at the time of crisis in medical providers, the more vulnerable they are to provider failure to provide full disclosure and failure to provide true informed consent. Some providers interpret the patient's silence as a desire "not to know" more, and are happy to make that assumption without verification, and to avoid the time-consuming importance of that discussion. Others are more true to their professional obligations and make the effort to avoid confusion by independently introducing the difficult aspects of treatment and the medically known alternatives, along with the rest of the dialogue.
Without some enforced requirements for full disclosure and genuine informed consent as a written statement included in the guidelines, medical providers run the gamut from truthful to dishonest.
As others have pointed out, it is therefore best to question and do one's own research prior to accepting and beginning treatment, and not to blindly trust in and revere the recommendations of medical providers. This is especially true for treatments that have no garanteed outcome for any individual, and that include many difficult side effects.
I am saddened to see that patient trust continues to be violated by some providers and believe it is better to remind patients that it does happen.
AlaskaAngel
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AlaskaAngel,
"Informed consent" means just that. And it is required. If you were not adequately informed of the risks, benefits, and alternatives of your treatment, then you should file a complaint. Have you done this? Does your hospital have a "Patient Bill of Rights?" Most do, and they're posted all over the place and given to each patient admitted. Did you receive any literature about your treatment prior to your treatment? Did you read it? I find it hard to believe that something as predictable as chemotherapy-induced menopause (temporary or permanent) was never mentioned or discussed or presented in written and oral form. Side effects of menopause unfortunately include sexual side effects - it's no secret, and it's certainly a well-known fact. Is it possible or reasonable for an oncologist to mention every single possible side effect? Entire books have been written on it, so how would it possibly be covered in an office visit? I don't remember my oncologist specifically mentioning the fact that sweat would sometimes drip into my eyes when I lost my eyebrow hair as a result of chemotherapy. Should I sue her for failing to mention that?
Take it a step further - what if sweat dripped in my eye while driving and I had an accident because of it - should my oncologist be required to inform me that traffic accidents could be a possible side effect of chemotherapy? Dented car bumpers? Increased car insurance deductibles? Where does it end?
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Wait a minute, what's wrong with Breast Cancer Action or the Environmental Working Group? I like both of those organizations...
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EWG has a ton of stuff about toxics and the risks they pose. All very, very true. BCA consistently calls for groups like Komen to stop taking money from companies that use carcinogens to manufacture their products - don't have a problem with that, either. The amount of toxins in our environment today is staggering and we just let these companies dump whatever they want into our food, our drinking water, our cosmetics. And then we wonder why cancer rates are so high.
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Sorry, Sweetbean. IMO, they're both political-agenda-based, "junk science," fear-mongering, fact-twisting, dishonest groups, and their main purpose seems to be promoting unscientific ideas and misinformation campaigns.
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While discussions like this one are never pleasant or easy, they are the elephant in the room. Intimidation and personal attacks only make that more obvious.
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AlaskaAngel... Personal attacks? I guess it is okay to make GENERAL insults to a wide swath of people than PERSONAL insults. That is very polite of you.
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Re: "...Tis a pity the NCCN Guidelines are based on such limited consensus (Lucy88)"
Actually, the NCCN guidelines are based on what seems to me a pretty impressive brain trust:
Board of Directors
The NCCN Board of Directors is comprised of two representatives from each NCCN Member Institution who share in NCCN's mission to improve the quality and effectiveness of care provided to patients whom they serve.
Thomas A. D'Amico, MD / Chair
Duke Cancer InstituteSamuel M. Silver, MD, PhD / Vice Chair
University of Michigan Comprehensive Cancer CenterRay Lynch, CPA, MBA / Treasurer
Huntsman Cancer Institute at the University of UtahMara G. Bloom, JD, MS / Secretary
Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer CenterLaura Adams
Stanford Cancer InstituteAl B. Benson III, MD
Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityRobert W. Carlson, MD
Stanford Cancer InstituteCarolyn C. Carpenter, MHA
Duke Cancer InstitutePeter R. Carroll, MD
UCSF Helen Diller Family Comprehensive Cancer CenterWilliam E. Carson III, MD
The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research InstitutePeter F. Coccia, MD
UNMC Eppley Cancer Center at The Nebraska Medical CenterTimothy Eberlein, MD
Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of MedicineStephen B. Edge, MD
Roswell Park Cancer InstitutePaul F. Engstrom, MD, FACP
Fox Chase Cancer CenterDavid S. Ettinger, MD
The Sidney Kimmel Comprehensive Cancer Center at Johns HopkinsMichael A. Friedman, MD
City of Hope Comprehensive Cancer CenterDavid C. Hohn, MD
Roswell Park Cancer InstituteKaren Kharasch
Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of MedicineTerry Langbaum, MAS
The Sidney Kimmel Comprehensive Cancer Center at Johns HopkinsJoseph H. Laver, MD, MHA
St. Jude Children`s Research Hospital/University of Tennessee Cancer InstituteAlan F. List, MD
H. Lee Moffitt Cancer Center and Research InstituteSean J. Mulvihill, MD
Huntsman Cancer Institute at the University of UtahPaul J. Nelson
Memorial Sloan-Kettering Cancer CenterMichael N. Neuss, MD
Vanderbilt-Ingram Cancer CenterPatrick O`Brien, MBA
Fox Chase Cancer CenterDavid G. Pfister, MD
Memorial Sloan-Kettering Cancer CenterRita Potter
UNMC Eppley Cancer Center at The Nebraska Medical CenterBeth A. Price, MBA
Vanderbilt-Ingram Cancer CenterWilliam Sargeant, MBA
City of Hope Comprehensive Cancer CenterLee S. Schwartzberg, MD, FACP
St. Jude Children's Research Hospital/University of Tennessee Cancer InstituteGerrie Shields
UCSF Helen Diller Family Comprehensive Cancer CenterWarren Smedley, MSHA
University of Alabama at Birmingham Comprehensive Cancer CenterF. Marc Stewart, MD
Fred Hutchinson Cancer Research Center/Seattle Cancer Care AllianceMyra Tanita
Fred Hutchinson Cancer Research Center/Seattle Cancer Care AllianceWilliam P. Vaughan, MD, MBA
University of Alabama at Birmingham Comprehensive Cancer CenterBraulio Vicente, MBA
H. Lee Moffitt Cancer Center and Research InstituteTimothy E. Volpe
Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityMarcy B. Waldinger, MHSA
University of Michigan Comprehensive Cancer CenterJeff A. Walker, MBA
The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research InstituteRonald S. Walters, MD
The University of Texas MD Anderson Cancer CenterRandal S. Weber, MD
The University of Texas MD Anderson Cancer CenterJane C. Weeks, MD, MSc
Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer Center
NCCN Foundation Board of DirectorsSam Donaldson / Chair
ABC NewsMichael Parisi / Vice Chair
Ogilvy CommonHealth WorldwideRay Lynch / Treasurer
Huntsman Cancer Institute at the University of UtahJohn A. Gentile, Jr. / Secretary
Harborside Press, LLCAl B. Benson III, MD
Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityRussell W. Budd, JD
Baron & Budd, P.C.Gena Cook
Navigating CancerBrian Garofalo
Patient AlliancesWilliam N. Hait, MD, PhD
Johnson & Johnson Pharmaceuticals GroupDeborah Morosini, MD
AstraZeneca Pharmaceuticals LP
Lung Cancer AllianceJai Pausch
Advocate and wife of the late Randy PauschDenise Reinke, MS, NP
University of Michigan Comprehensive Cancer Center
Sarcoma Alliance for Research through Collaboration (SARC)Andrew von Eschenbach, MD
Samaritan Health Initiatives
Former Commissioner of the US Food and Drug Administration and
Director of the National Cancer Institute
Former Director of the Prostate Cancer Research Program and
Director of the Genitourinary Cancer Center at
The University of Texas MD Anderson Cancer CenterRobert C. Young, MD
RCY Medicine
Former President, Chief Executive Officer and Chancellor
of Fox Chase Cancer Center -
Oh wow, we are going to have to agree to disagree. I find that both organizations are based on real science, not the spin that comes out of corporations and organizations like Komen that have sold out to them. Toxins play a very real role in cancer and a number of other auto-immune and neurological disorders and the fact that we allow all these corporations to pollute is just crazy. Junk science is organizations that say parabens and BPA are safe, when they clearly aren't.
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Thenewme... Some how i think Lucy will tell us that the NCCN doctors are engaging in Groupthink. Ditto for ALL doctors in EVERY specialty that create guidelines. Really? How could ANY of them be trusted? And for those of us who DO trust our doctors, even after doing due diligence....inAlaskaAngel world, we'd be committing heresy!
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