Bioidentical hormones..is anyone taking after breast cancer?
Comments
-
Interesting article, Deanna...I'm off to read more! Thanks!
0 -
Oh my God Deanna, you don't want to get me started......
"The Haunting of Medical Journals: How Ghostwriting Sold "HRT"
http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.1000335
"Ghostwritten medical articles called fraud - CBC News
Posted: Aug 2, 2011 6:16 PM ET
It's fraudulent for academics to give their names to medical articles ghostwritten by pharmaceutical industry writers, say two Canadian law professors who call for potential legal sanctions"
http://www.cbc.ca/news/health/story/2011/08/02/ghostwriting-medical-legal-fraud.html
'Mistakes in Scientific Studies Surge"
The editor of the Lancet: "The apparent rise in scientific fraud, said Dr. Horton ‘is a scar on the moral body of science.'"
http://www.physicstoday.org/daily_edition/science_and_the_media/1.2584401
"Medicine: neither Good Evidence nor Good Medicine" by Steve Hickey, PhD and Hilary Roberts, PhD
http://orthomolecular.org/resources/omns/v07n15.shtml
'Evidence Based Medicine Is a Fraud. Here's Why"
http://www.newmediaexplorer.org/sepp/2011/12/18/evidence_based_medicine_is_a_fraud_health_supreme_newsgrabs_18_december_2011.htm0 -
Thanks for those links, Maud. I don't have time to read them right now (expecting house guests shortly, and need to get off the computer!)... but I'm anxious to read them and will tomorrow.
Along the same lines of deciphering what is truly evidenced-based med, I recently heard about someone who was on a drug trial for another type of cancer and was taken off of the trial because he had a recurrence while on it. How the heck are we suppose to believe trial results when that's the game they're playing??? I know this is purely annectodal, but again, something bothersome that's been on my mind. Deanna
0 -
Anne,
I certainly agree with much of what you said but - and it's a big but - I know that my oncologist did NOT tell me about chemopause. She did not warn me about loss of sexual function. Nor dry eyes. Nor lasting fatigue. Nor my 20 pound weight gain. When I brought up effects on cognitive function, she dismissed my concerns.
In addition, I now have to worry about long term health risks due to early menopause.
There's nothing I can do about it *now* - I've been through chemo, I'm damaged. I might have made the same decisions had I known of the lasting effects; I might not have. Hard to say, not knowing.
Whining about it, wallowing in self pity & regret - eh, they don't change a thing; there are no do-overs. Still, grief and anger are valid... I'm only six months out of chemo, and I already hate listening my mind replay the what-ifs but I can't stop yet, I'm still going through the process.
Beyond that, it's important, IMHO, to educate other women as to the long term consequences of chemotherapy, and to educate (to the degree possible) our doctors that they need to inform their patients *before* chemotherapy of the possible and/or likely consequences of treatment. You know that if a medical procedure was going to render a male patient impotent, they'd damn well tell him about it beforehand.
Among other problems, because she did NOT warn me of these consequences, I no longer trust her... and I am far less likely to follow her medical advice.
I don't think she was malicious in any way - but I do think that because she was focussed on giving me the best possible odds, and because she knew I objected to Tamoxifen (partially because it often induces menopause, and I knew that would be hard on my body) , she deliberately (or not) did not inform me.
that's not acceptable.
My body, my choice... I don't have small children (nor large ones), I don't have a live in partner, I'm comfortable with a moderate amount of risk. Menopause would come eventually anyway, it's a natural process - and so is death.
Everything to its season.
0 -
Since making my decision not to do chemo or rads (didn't need chemo) I have not yet second guessed that decision. I did an enormous amount of research prior to choosing my treatment options and I talked to several RO's, as well as my naturopath. I agreed to do tamox as a compromise for not doing rads, and already I'm having some issues with SE's which I will try and work through.
I'm already postmenopausal...had a complete hysterectomy 20 years ago...something I would not allow today. I was on HRT (recommended by my doctor)..again something I would not do today. I had enough bad advice from the conventional medical community and the price I'm paying is bc. I certainly don't intend to take their advice now without doing my own research.
0 -
Deanna, thank you for that link. It articulates perfectly how I feel about studies, status quo, what 'counts as evidence'. I'm all for evidence. Wish there was more of it. I just don't buy into the sources that some deem as credible. Just as I was typing that sentence, a recent photo flashed in my brain of the all-male panel testifying on capital hill about birth control. It shouldn't take a PhD for anyone to realize what's wrong with that picture. ...yet there it is in contemporary news.
0 -
Loving this thread and all your input and research. I think I am the only one in there with +++, but I still feel this is a great thread with relevant considerations. I took Femara for 22 months...I did not know that I should have had a bone density scan no later than one year post starting Femara so that they could compare the baseline bone density scan with where my bones would be at, one year later.
My GP called me a week ago Tuesday, completely confused by the T-Score - to tell me that my pelvic bone is now -4.9. This means that 49% of my pelvis has been obliterated...leeched, by this drug. He said he has never seen a woman my age with this advanced bone loss. He added he has patients in excess of 90 years old with better bones than me. I am completely mortified. He told me that had we tested me one year out from starting Femara, any change would have been noted and discussions would have occured to at least decide if I should continue the Femara. I called my Onc last Tuesday about it to see where we should go from here...he still has not returned my call. I hoping it is because of the battery of tests I have gone through since Friday the 24th, rather than not responding to me as he realizes he may have been negligent in following up with me. In any event, I am going to seek a BMX now...I cannot go back on the AI's, they are clearly toxic for me and at 48, this is unreal, the damage to my bones.
Focusing on my diet and exercise, at the moment...
0 -
Hello Sanaisa, so very sorry, it's awful what you are going through. Have you seen the thread started by Evebarry on bone loss in the Alternative Forum; the ladies there are most helpful.
http://community.breastcancer.org/forum/121/topic/782971?page=2#idx_59
0 -
Studies reveal that pumpkin seeds possess natural testosterone-boosting powers. They're not only super high in muscle-building protein but they also contain high levels of the exact type of fat and nutrients shown to stimulate male androgenic hormones!
http://www.buzzle.com/articles/testosterone-boosting-foods.html
http://www.buzzle.com/articles/natural-testosterone-supplements-for-women.html
Kaara, if I were you, I would feel confident in my decision - will dig up studies I've found
0 -
Reading along...
0 -
did the complete hormones 24 hour urine yesterday...its on its way to the lab in N.C.....curious to what the results will be...also the blood labs that I had drawn last week....Doc will call me when she has all the results......DHEA and Testosterone are the two BHRT that she is considering for me.....will keep you posted.....
0 -
I just started back on BHRT. I was on the pellets when diagnosed and stopped hormones immediately. I certainly did not want to stop, but my onc nearly fainted when I told him I wanted to continue them. I had a double mastectomy, no radiation, no chemo, no lymph node involvement. Stage IIa
Anyway, here I am almost two years out, and with research, I decided to go back on BHRT. I'm now doing shots instead of pellet implants, but it's easier to control my dosage this way. I do blood tests often, but so far I haven't gotten relief from the hot flashes, and believe my dosage will have to be raised higher to end those. I take many supplements also.
My NP of course started with a very low doses. We follow up with blood tests often. No, my Onc doesn't know, but it's my decision to make. He still follows me every 3 or 4 months, and I don't see the plastic surgeon again for a year.
As far as what has been proved and what hasn't, nothing is for sure. You can do everything you are told to and the cancer can still come back and kill you. I want my quality of life to be good and that includes taking the hormones. Who knows, I might change my mind at some point, if so, it's still my decision.
0 -
Renee....So you said you are taking shots. Are you taking estrogen? testosterone? I'm not familiar with getting hormones by injection other than guys getting testosterone shots. Best of luck to you. Please let us know how it is working for you. When I was first diagnosed and still on my pellets, I said that QOL was not something that I was willing to compromise. But now, I am not quite so brave. I still have one natural breast to protect. Wish I had a crystal ball.
0 -
For me, the hot flashes are bearable - if that was all there was, it'd be unpleasant, but no huge whoop. For me, it's the change in sexual function (the lack of lubrication, the constant chafing and "discomfort" aka low level pain, the burning on urination), the emotional lack of affect (everything is *flat*), general lack of energy and overall malaise, and the culmulative effect of a thousand other small effects.
This is not my beautiful life.
Right now I'm using Estring, and Estrace - and I just began using Testim. The Testm is having the most dramatic effect - I may need to cut back on the dosage a bit.
0 -
Dropjohn,
Thanks for continuing to post. The way I describe the loss is by explaining that the "experts" seem to be limiting their concept of it to the effects on my sexuality, and once again it is as if they think "x" part of the body is the only part affected. They recommended Effexor for any "depression" as a result of the loss of sexual function, as a means of "lightening up" and possibly encouraging whatever sexuality was left. But what they don't "get" is that this isn't that simple. It is more like a global brain lobectomy of ANY and ALL sensuality.
An example: Before the loss, seeing the beauty of nature, or hearing music, and those kinds of stimulation could be felt and experienced. Now, I see it and hear it but it has very little impact on me. What the experts don't seem to comprehend is the actual chemical balance is changed and antidepressants and counseling can't and don't fix it.
A.A.
0 -
1openheart: The shots have estradiol, testosterone, progesterone mixture in very small amounts. One shot every 7 to 10 days. I still take DIM for estrogen metabolizing. I also had uterine problems right after diagnosis, have had two D&Cs since the mastectomies. I worry about the uterine lining almost more than the cancer.
dropjohn: My hot flashes were 10 to 15 minutes every 20 to 30 minutes. Plus all the other things you listed!! The testosterone helps with the sexual problems, progesterone helps with the mind fog, and the estrogen helps with the hot flashes.
I saw a story from a woman who survived her breast cancer, did tamox etc....celebrated her five year survival day...then 16 year later the cancer came back in her bones and spread. She's working as long as she can, but is on chemo. I think this is a crap shoot. The doctors do not really understand the what, where and why of cancer, and most of the time their treatments make things worse not better. Yes, it seems to work for some, but really hurts others.
Anyway, we are here now, live!!
0 -
dropjohn: What is testim?
A.A. Also, about Effexor, it is an anti depressant, and they are notorious for lowering your sexual libido, so if you are on it and not feeling it, that might be the reason. Sometimes if you're seriously depressed you have to make a choice and weigh the downsides with the goodsides, but to take it for hot flashes and then lose your sexuality...I would have to think about that, particularly if I was still fairly young...hey...I would have to think about it and I'm 71!
Yes, I agree, bc is a crap shoot. All you can do is what you think is best for your body, and then pray!
0 -
Kaara,
Yes, I knew about that "SE" of Effexor. I don't take Effexor, as it did not help. The only thing that has seemed to help is staying active physically, in the sense that it gets rid of the minor depression that everyone gets from time to time. But exercise doesn't do squat for sensuality for me, and that is what is missing.
0 -
I wonder if what has been affected that they don't seem to comprehend might be my level of oxytocin. And once again, I think it is so key for a truly ethical basis of providing treatment to us that we should have an endocrinologist who is trained in cancer to sit on each one of our tumor boards, to give a much, much truer TOTAL picture of our situation and make recommendations for us.
0 -
My libido slowed down dramatically after I had my hysterectomy 20 years ago. I really haven't been the same since, yet I have managed to enjoy a fairly pleasurable sex life, just not as intense. What I don't like is the dryness and pain that will come from not being on the BHRT. That will make it really difficult to engage in pleasurable sex, so I'm hoping to get something for that...maybe estriol cream. I already have some that I haven't used because I didn't know if it was safe with my bc dx.
0 -
Kaara: Testim is a testosterone gel formulated for men who are having problems with their hormone levels. This is an off label use. Second day of using a *tiny* amount, and I'm a bit speedy.
The current wisdom is that hormone replacement in any form increases risk of recurrence. I'm not willing to accept this as my ongoing quality of life. It's been six months and things just keep getting worse.
0 -
Kaara, in the news today:
Radiation still used despite evidence of little benefit to some older breast cancer patients
http://medicalxpress.com/news/2012-03-evidence-benefit-older-breast-cancer.html
0 -
dropjohn.....I sent you a pm....much of what you wrote describes me to a "T"....I won't use estrogen or progesterone due to the risks, but I will try others....my onc will let me use estring....my doc who specializes in BHRT just Rx estroil (think thats the one) creme...haven't tried it yet....need to use it every day for 2 weeks, then twice a week....I want my libido back!!! I want to feel, to have a zest for life....I want to be a feeling middle age lady instead of someone who is just going through the motions!!!!! I see my onc in 10 days for my 6 month check up....I'm pretty sure he will be in agreement to try the estroil creme as well as testosterone and hopefully DHEA as he did Rx testosterone for me about 1 1/2 years ago, but didn't see a difference.....I'm desperate for my "old life" back!!!!
0 -
Karen - PM answered.
If you find something that works, let me know!
0 -
I am lurking on this site and I wanted to introduce myself. I am almost 55 and have just finished Taxol12X and in the middle of Navalbine 12X. No rads since I had rads in 87 (for lymphoma) and it is what they guess caused this cancer. However, I do know--I was on BioIndenticals--my estrogen level had gotten way too high. I am expecting my Onc to tell me very soon about doing an AI and I am adamant against it. But, and a very big but, I am scared and not sure what I want to do about it all. Thank you for all your research and I would like to be part of future discussion. You gals are terrific. Q
0 -
I'm beating my personal drum here in behalf of us all...
WHY, after all these years of breast cancer and treatment, are there NO specialists that are fully educated in the endocrine system, to make recommendations at our tumor board in regard to our treatment and posttreatment, so that these issues are fully addressed honestly up front, right with the surgeons, radiologists, and oncologists?
0 -
To be really comprehensive, maybe we should include other applicable specialists, just to make sure all possible issues are fully addressed honestly up front, right with the surgeons, radiologists, and oncologists. Why aren't we told about these things ahead of time? My oncologist is a liar and a cheat and should be sued for malpractice for having failed to fully discuss all these issues with me! Here are just a few professionals who should be included, IMHO:
-Gastroenterologists to help deal with digestion issues.
-Dentists to help with treatment-related dental issues.
-Psychiatrists to help with the emotional aftermath of cancer treatment.
-Urologists and Gynocologists to help with "female issues."
-Cosmetologists to help deal with treatment-related hair and nail problems.
-Neurologists to help deal with neuropathy, which can be a side effect of some treatment.
-Orthopedists to help deal with skeletal complaints.
-Librarians to help research treatment options.
-Lawyers to litigate when things go wrong.
-Ophthalmologists to help with dry eyes or tearing that can come with treatment.
-Infectious Disease Specialists to address infectious issues.
-Politicians to lobby for anything marginally breast-cancer related.
-Comedians to provide much-needed humor during this decidedly un-funny episode.
-et al.
0 -
And mothers who love us and who will look after us even if they disagree with our choices. My grandaughter (9) told me the other day that I needed a mom. She's right! Kay
0 -
thenewme,
I get your point. But why should a surgeon or a radiologist or an oncologist or all 3 be making decisions about endocrine management that is specifically designed to change the endocrine system as a primary goal without the patient ever being personally evaluated by an endocrinologist?
0 -
Hello Quaatsi, happy you're joining 0
