Opting out
Comments
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Rosabella...IMO that's just not true. You can test hormone levels via saliva and 24 hour urine tests. I feel the reason it's not done is because MOs are not trained to test female hormones and really do not know a whole lot about them. Not sure I understand your point about it being similar to tumor markers. Such a complicated disease!
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The science behind AIs and tamoxifen is to suppress all estrogen. Everyone including men produce Aromatase in the adrenal gland that is then converted to estrogen. This is a continuos process. Even the break down of fat cells in weight loss releases estrogen. Hence yoyo dieting can become a risk factor for some of us. But when it is all said and done unless we have a cutting edge cancer specialist lurking among us , I don't think any one wants to be responsible for discouraging a person from struggling with life and death decisions based on our experience alone. We offer our experience, our struggles, our doubts and our hopes and regrets. I struggled with sharing my signature but it is the only quick way to share with a sister where I am along this crowded road. Not to offend as I often do but I wish those who challenge or have a negative experience would post their signature to allow those clawing their way to a pathway to health to compare their DX and treatment so they can ask their treatment team the right questions. Hugs to all and a good day today. Jo0
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Jo, the oncology doctors in the video (linked above) clearly established the referenced study's stated statistics indicating that 2/3 of BC patients' lives are being lost (death) after completion of 5 years on Tamoxifen, while 1/2 are also recurring after 5 years on Tamoxifen. If you take issue with their statistics, please kindly take that up with the medical study authors and physicians presenting those facts.
Please kindly do NOT shoot "the messengers" who are delivering experiences and facts with the sincerest of intentions. We don't need to be policed, as we're all mature adults wishing to help others, or we would not be here.
Pardon me for not sharing my private irrelevant signature because both my invasive cancers are very rare (less than 1-2% of all BC) and often misunderstood within the medical community. Characteristics were molecular Luminal A phenotype, ER+/PR+ HER2- with a lower frequency of mutations, driven by mutations in different pathways (vs. IDC) with different molecular origins and distinctive transcriptomic profiles, as compared to common every-day conventional IDC.
Until we begin monitoring our own estrogen or E2 levels, and any associated metabolic rates, if any, BC patients cannot be assured if their Tamoxifen or aromatase inhibitors are working. Before, during and after, as Dtad had suggested. Best wishes...
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I think dtad may be right and I don't think an MO would even know what to do with the result since they prescribe the same dose of hormone meds to everyone. On the other hand, maybe they're right and a single estrogen test is unreliable because it fluctuates. You can order almost any blood test you want if you are willing to pay out of pocket. Look online for LifeExtension.com. They have an extensive list of tests available. You can order single tests or various panels they have put together. You can also order blood tests for tumor markers. They will email the lab order to you,which you then print and present at any Lab Corp lab except in several east coast states which don't allow this. Just be sure to call ahead to the lab to make sure they participate in this arrangement before you shell out any money. I've done this, it works. Lab Corp is a reputable nation-wide chain of labs.
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So here is something Lula73 posted this year. It might help with the Estrogen discussion.
Estrogen how it works
Mar 19, 2018 12:29AM Lula73 wrote:
Here's a basic rundown of how all this works:
Before menopause, most of the estrogen in a woman's body is made by the ovaries.
After menopause, the ovaries stop producing estrogen (and there is some data showing they may actually start releasing androgens)
Smaller amounts of estrogen are still made in the body - Androgens produced by the adrenal glands are made into estrogen in fat tissue through a process known as aromatization (the aromatase enzyme is the key to the androgens being converted to estrogen by our fat cells).AIs inhibit the aromatase action.
Everyone of us, regardless of BMI, size, weight, etc. has subcutaneous fat (the layer of fat that lies between the skin and musc)
and some level of visceral fat (the fat behind the abdominal muscles that surrounds our organs), so aromatization will happen regardless of how thin or heavy you are.
It has been hypothesized that heavier women may have a higher risk of breast cancer with all other factors being equal compared to thinner women because of this process and the possibility of greater amounts of estrogen production. (key words: hypothesized & possibility). One would think though that since it all starts with the adrenals releasing androgens, that it would go back to how much androgens are released. This hypothesis would only apply to ER+ breast cancers. Anyway that's a whole other topic with no definitive evidence either way. On a side note, being overweight or obese is a risk factor for developing any type of cancer and is true regardless of gender.
There is a lot of discussion on various boards in multiple disease states about why a thin person takes the same dosage as a heavier person. Dosing of medications depends on several different factors and weight isn't always one of them. (Weight is usually a factor for children's dosing as their bodies are not fully developed and so much smaller with far less blood volume than an adult.) Let's take ibuproen or tylenol as an example: dose is based on weight in children but not adults for this very reason. We also know from phase 2 trials that there is an overdose threshold for both. But you likely don't think twice about popping 2-4 ibuprofen/2-3 tylenol at a time for a headache even though the bottle says to take 1-2. Very similar to pain relievers, when it comes to AIs and tamoxifen, weight is not considered a factor based on results from clinical trials. The AIs (as well as practically every other med on the planet) have been tested to find the dose that delivers the greatest efficacy with manageable side effects. Dosing tests are done in phase 2 clinical trials. This is where they test different doses for efficacy and analyze differences in dose vs weight, vs severity/duration of disease, etc. Phase 2 trials can be harder to come across in the public domain and may have to be requested from the pharmaceutical manufacturer. Phase 3 trials are the ones where you really see just how effective a given dose is as that's when they test for efficacy, safety and longer term outcomes. If it makes it through Phase 3 trials then you know the med is as effective/as safe as or more effective/safer than the gold standard drug that was first developed to do what the particular drug does and/or compared to placebo. If there is no gold standard drug in existence then its studied vs placebo for the desired effect with manageable side effects.
Another thing on the side effects listed in the prescribing information of a medication. All the side effects listed may not be caused by taking the drug. You always have to look at the difference compared to placebo. The reason is study participants can experience a placebo effect. (Have you ever noticed how headache, nausea, GI issues and fatigue are listed as a side effect for just about every medication on the planet?) Additionally, if you're in a clinical trial and lets say you get the flu (headache, body ache, nasal/chest congestion, fever, sore throat, body aches, nausea, etc), you have to report those symptoms as side effects to the research doctor even though you know they were caused by the flu and not the drug. The size of the trial hopefully evens out the numbers when the side effect incidences are averaged.
They don't test for hormones when you're on an AI because what will you do with the information? You're already doing all you can do by being on the AI. Additionally its a complex and very expensive set of labs that are done and unless you've got something like precocious puberty or growth hormone disorder going on insurance typically will not pay for it (even then they don't like to pay for it). When you have your "hormones" tested by the OB/GYN they are usually just testing for the FSH (follicular stimulating hormone) results. Its kind of a backwards way of testing - the FSH levels go up as the estrogen levels go down. If your FSH levels are elevated that is an indicator of menopause. No need then to order the much more expensive test for estrogen levels. On an AI, your FSH numbers would be high and if we pulled an estrogen level it would be low.
Also if we look at the women taking tamoxifen, their circulating blood estrogen levels often go up on the drug because the estrogen is still being made but cannot enter the cells as tamoxifen blocks it's path. The body may at that point increase estrogen production in response to the lack of feedback from the cells. All this estrogen is now trapped in the blood. The liver will eventually metabolize it but sometimes the liver can't keep up and if you were to pull an estrogen level it would be elevated. FSH would also likely be high as well.
Why do we take AIs if its only addressing 20% of the overall estrogen levels? When we hit menopause (naturally, surgically or med induced), that 20% just became our new 100%. By stopping the aromatase conversion process, we effectively take that estrogen level down to 0 (or almost 0). Even though the amount of estrogen is lower than before, it does not change the fact that the ER+ cancer cells use it for "food". As long as they have food they will continue to thrive. Here's an analogy: lets say you had an ant infestation at your dog' or cat's feeding dish over the scattered kibble that your pet didn't eat/got pushed out of the bowl. Would it make sense to physically remove all the ants you can see right now knowing there is a possibility that there may be some more in the wall that you can't see (surgery), perhaps lay down some poison to hopefully take care of any strays/reduce the size of the population (chemo if warranted) and then just clean up 80% of the dog/cat's food which allows the remaining ants to survive & reproduce (menopause) if your intent is to eradicate them? That remaining 20% of food just became those ant's new 100% of food; keeping in mind that the demand for that food also went down with the reduction in the ant population from the removal and/or poisoning. Why do some women have recurrence/mets while on AIs? A lot of it goes back to the oncotype tests and recurrence rates. Some cancers are just more aggressive than others and they grow and replicate faster than the AI can starve them. Many women have ER+ & PR+ cancers. Although menopause significantly lowers the amount of progesterone being produced, and we've effectively taken the estrogen level to 0, nothing is stopping the ovaries from producing the little bit they are still making (unless you've had them removed). This can also lead to recurrence/mets. If the cancer is triple + then the HER2 component can come into play as well.
On the brain making estrogen. Here's a breakdown of the 3 arms of the trial and what they found (note that the studies were done in rhesus monkeys, not humans, but the researchers think it should be a similar process for humans): "In the first experiment, a brief infusion of estradiol benzoate administered into the hypothalamus of rhesus monkeys that had surgery to remove their ovaries rapidly stimulated GnRH release. The brain took over and began rapidly releasing this estrogen in large pulsing surges. In the second experiment, mild electrical stimulation of the hypothalamus caused the release of both estrogen and GnRH (thus mimicking how estrogen could induce a neurotransmitter-like action). Third, the research team infused letrazole, an aromatase inhibitor that blocks the synthesis of estrogen, resulting in a lack of estrogen as well as GnRH release from the brain."
I hope this helps clarify the process and answers some of the questions :-)
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Dtad, I post my message everywhere, as do you. Everyone should have the opportunity to hear from both points of view. I have had at least 60 people message me to see how I have been able to take Tamoxifen, without alot of side effects.
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Who is Lula73 and what is her area of expertise? Without citations and references, that's just a lot of words taking up space.
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Alice, glad you brought this up. People are making life and death decisions so its very important to cite the reference.
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wow. And Lulu knows her stuff. And if you think about it, it makes sense.
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Well, those of us who are newer are unfamiliar with Lula and have no idea what her credentials are. They should be cited, or the source she used, or both. That is standard practice for any field of research.
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Lula does research for a living, she’s here all the time at BCO.
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I don't post my diagnosis and treatment in the signature, there was a question on how Outbrain was tracking our info that made me too uncomforrable. Also all these posts are very public. I have disclosed my cancer info inside posts it is a little harder to collect the information that way.
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For those of you (like me) who were wondering where Lula73 is getting her information, go to the FEMARA topic and read her posts there. She is very good about referencing her sources. The bit that Marijen copied and pasted here was not Lula's complete post. But, to her credit, Marijen did give us a name and a date for Lula73's post.
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Thanks Sara, here’s Lula’s citations..
Mar 17, 2018 08:07PM Lula73 wrote:
Sorry for the delay as i was busy being baseball mom. Here you go...(you may need to get your calculator out for the links to studies as they don't do the math for you)
- 2 different GYNs gave me those exact numbers. In most of today's literature you don't see percentages only that ovaries produce the vast majority of estrogen. The adrenals via aromatization of androgens and fat synthesis and brain production being minimal.
Link 1- see page 70 under heading 'Sources of Estrogens and Androgens' : https://books.google.com/books?id=7DSYBwAAQBAJ&pg=PA75&lpg=PA75&dq=handbook+of+physiology+vol+2+extraglandular+estrogen&source=bl&ots=VpddIXE_13&sig=gxG7QHK6UwAlT2-ZftsVAIitDV0&hl=en&sa=X&ved=2ahUKEwiVtoucuvLZAhVY5mMKHdYaBhoQ6AEwAnoECAgQAQ#v=onepage&q=handbook%20of%20physiology%20vol%202%20extraglandular%20estrogen&f=false
Link 2 - BCO page on Ovary Removal - includes discussion on ovary removal + AI being more effective: http://www.breastcancer.org/treatment/hormonal/ovary_removal
Additional excellent information from BCO on all sources of estrogen and how the adrenals and aromatase factor in: http://www.breastcancer.org/treatment/hormonal/what_is
Link 3 - Percentages (90%+ made by ovaries) are quoted just under the yellow chart: http://holistic-online.com/remedies/hrt/hrt_estrogen.htm
Link 4 - decrease of E2 levels after menopause on page 9 & in table 1 on of 72: www.researchgate.net/publication/290477121_estrige...
Link 5 - Figures 1 & 2: www.academic.oup.com/humupd/article/13/6/559/68298...
Link 6 - Figures 1 & 4: www.ncbi.nlm.nih.gov/pmc/articles/pmc3197715/
Link 7 - www.obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/...
I have more if these aren't enough...
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Okay, thanks. I've just seen a few too many self-proclaimed experts on this and other topics online that I've gotten in the habit of asking.
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i just finished Tamoxifen tonight. My last pill after 5 years. I had a complete hysterectomy last August which made my oncologist decide I did not need Tamoxifen for 10 years as she initially decided. That the effectiveness of Tamoxifen at this point is negligible according to her. I can say all the fear and anxiety about getting cancer again is peaking. Without it I fear I will die. Three of my BC friends died of reccurance yet all were on Tamoxifen. To me it was a security blanket. I can say Tamoxifen has made my bones and joints hurt terribly at times leading to an rx of medical cannabis. I need to find a psychiatrist as my antidepressants are not working anymore. I am having massive free floating anxiety. I am also having suicidal ideation. I am googling how to kill oneself painlessly allot lately. I will not kill myself but I think it gives me a sense of control to take my own life versus getting a dx of cancer again. My son says 'Mom your fine. Your not going to die.' Yet I can't shake it. I am sure I will get cancer again. That I will not make it into my 60s. Tamoxifen has made me feel like crap for 5 years. Joint pain. When it gets cold and rainy I feel my whole entire skeleton ache. I will get a psychiatrist. My GP keeps renewing my Effexor but I need something far more powetful.
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i just finished Tamoxifen tonight. My last pill after 5 years. I had a complete hysterectomy last August which made my oncologist decide I did not need Tamoxifen for 10 years as she initially decided. That the effectiveness of Tamoxifen at this point is negligible according to her. I can say all the fear and anxiety about getting cancer again is peaking. Without it I fear I will die. Three of my BC friends died of reccurance yet all were on Tamoxifen. To me it was a security blanket. I can say Tamoxifen has made my bones and joints hurt terribly at times leading to an rx of medical cannabis. I need to find a psychiatrist as my antidepressants are not working anymore. I am having massive free floating anxiety. I am also having suicidal ideation. I am googling how to kill oneself painlessly allot lately. I will not kill myself but I think it gives me a sense of control to take my own life versus getting a dx of cancer again. My son says 'Mom your fine. Your not going to die.' Yet I can't shake it. I am sure I will get cancer again. That I will not make it into my 60s. Tamoxifen has made me feel like crap for 5 years. Joint pain. When it gets cold and rainy I feel my whole entire skeleton ache. I will get a psychiatrist. My GP keeps renewing my Effexor but I need something far more powetful.
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Bless your heart Bcky we all feel your pain physically and emotionally. I took Tamoxifen for 5 years too. My MO said there was no need for me to continue taking it because of the risk of blood clots. I had one on my leg when I was 16. I too had the joint pain but also thought taking it wasan extra insurance policy against a recurrence.
I can also relate to loved ones dying from BC despite taking meds. My sister was one of them. She passed away in August from metastatic BC. She suffered so. She was DX in 2012 and it came back 3 times; the last time it took her life. Obviously we are devastated and heartbroken.
Unfortunately there are no guarantees with this insidious disease even when we have surgeries and treatments. We are forever branded with the C word. Nothing will keep us from looking over our shoulder for the rest of their lives.
The good news is as time goes by your chances of survival increase dramatically. There are ladies who have recurrences after the 5 year milestone but those cases are not the norm. Btw I was 8 years out last August. I had IDC, Stage 1b, grade 1. I had a lumpectomy and 33 radiation treatments. I also had the Oncotype test done. My score was 11. Did you have the test?
Keep your game face on for your son. I did and still do even when I’m in a panic before my annual mammogram. That will never change.
Keep the faith and keep us posted.
Diane
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Opting in or out is a completely personal decision that everyone has to make for themselves. There still are no guarantees regardless of your decision.....still a crap shoot. This is a sneaky disease and hopefully people are making informed decisions based on factors relevant to them. We can only judge what is right for us individually and others opinions are just that, opinions. I learned that lesson by being influenced to just do close monitoring of breast health after BRCA1+ dx even though I was leaning towards prophylactic BMX. I was told that I was over-reacting and BMX was overkill. Well, I developed bc and ended up w BMX anyway. I don’t blame the other person, it was ultimately my decision, but I sometimes get pissed at myself for not listening to my gut. Btw, the “influencer” is now having prophylactic BMX b/c of my dx. All this said, I will not allow myself to be influenced about my treatment and healthcare going forward. Make the best decision you can based on your factors and risks you are willing to take. That’s the best anyone has to offer us presently. Don’t let others judge you for your decisions and don’t judge others for theirs.
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Thanks. Diane. I appreciate the supportive words. Game face back on for my son and family. I am so sorry your sister passed. My oncontype is 11. No BRCA gene.
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Bcky -opting out, going with treatments/drugs and kicking the big C's ass out the window is a very personal decision that only you can make. Just started a "Coping" support group, which is helpful. When BC was diagnosed for the 3rd time, my reaction was to throw in the towel, cash out all accounts, and have as much fun as possible. But there are too many places I want to go and things I want to do, to give up now, so I am taking Ibrance and Arimidex. Besides, the dog needs a walk, and the cat needs someone to open the tuna fish can. A PET scan in Sept showed no mestasis, and a genetic test showed none of the almost 30 known markers (thats the catch, known). My oncologist strongly feels that each occurence is a new cancer and not a recurrence, but when pressed, admits there is no way to really know. I am on cycle 2 day 10 of the Ibrance. Oncologist wants another scan Dec/Jan to see if tumor has shrunk.
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine,now just potassium; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while. New multi 11/2019 at recommendation of ND to replace all the individual ones. Found I needed more Magnesium than the multi provided for muscle cramps. Also taking additional D.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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