Tamoxifen often causes insomnia/depression. Did they warn you?
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Blindsided, but I looked up the side effects myself. Later I saw a note in my file that I had been given a list of side effects, that never happened. This talk of what "most" doctors do must be here-say information, I sincerely doubt that anyone knows first hand what most doctors do, could not possibly name them or have met with them personally. Common sense says that's impossible. Being wired is not the same as recharging. Maybe too many cups of coffee, although I suspect even the brain gets toxic. Radiation produces fatigue and nausea due to the toxins of an abundance of dead cells. Not getting an honest answer has nothing to do with being afraid to ask the question. We are here because we want to know and understand. Patronization is for the doctors, not the women at BCO. A good reason to disregard those who practice it.
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One third of patients on hormonal therapy are not offered bone scans
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Weeks later, reading the lying note in my file that I had given informed consent prior to undergoing a core needle biopsy, combined with a host of other reasons is what prompted me to switch my medical team. Had I known that puncturing my tumor 4 times to collect "samples" prior to diagnosis was going to release the cancer cells into the breast tissue and possibly my blood system, I would have refused and insisted on an excisional biopsy. My tumor was a palpable lump and even if it was benign, I would have wanted it excised.
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Bosombuddy 101, how do you know that the biopsy released cancer cells into your breast tissue and blood stream? You seem to have no positive nodes and are early stage, so there is not direct evidence that happened, at least according to your profile.
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I am 6 years out from my BC DX. My MO started me on Arimidex and I had no real side effects initially. However, when I was DX with borderline osteoporosis I talked to her about the fact Arimidex attacks the bones. She decided to switch me to Tamoxifen despite the risk of blood clots. I had a blood clot in my leg when I was 16. My doctor said that wasn't a concern because I have had 2 children.
I don't think she would have switched me had I not questioned her about it. Point being we have to be our own advocates after all it's our bodies and our lives.
Recently a PA prescribed a drug for shoulder pain that had no fewer than 20 side effects, each one more debilitating than the other. She didn't say one thing about them and the Pharmacy just cautioned me to not take Aleve or Advil while taking the drug. The attachment with my prescription did not list the more serious side effects of the drug. My bad I didn't check the drugs.com website that listed all of these. Again, be your own advocate. Doesn't excuse the PA from at least mentioning the side effects or the pharmacy which had been diligent in pointing out the possibility of side effects. This same pharmacy convinced me not to take steroids unless I had no other options.
My doctor didn't caution me about any side effects and fortunately I only suffered with joint pain while on Tamoxifen.
We have every right to question a prescribed drug and should. I could care less if my doctors don't like it. Not their decision. They don't have the final say. We do.
Finger pointing won't solve anything but just be persistent in your decision to take it or not.
Diane
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Bosom, I'm not saying it doesn't happen. Just can't see evidence in your situation. I actually think it did happen to me. Three years before my diagnosis, the exact same area was biopsied. No cancer was found, but I believe that was a false result. Then, with little evidence that my low grade cancer could have spread to the nodes, there it was three years later. This has always made me wonder if the initial biopsy put cancer into my breast tissue. I have no evidence, just suspicion.
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I watched the screen while a trainee doctor at the renowned teaching hospital pushed a needle in and out trying to reach the DCIS area to biopsy as I had an occult primary. I was horrified, in the days following my breast was completely dark black and blue and took a month to clear up. I was not advised she was learning but if given a choice I would have declined. I was afraid of seeding and they assured me that doesn't happen. But obviously they must have known it was possible. We can ask the questions and still get lies. Is that pointing fingers? I would always prefer the truth. This was day one. We become our own advocates but in the first few hours before dx we're expected to know the game?
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Hi everyone....I stand firm in saying that prescribing docs have a responsibility to discuss the most common and the most severe possible SEs. Good luck to all.
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One side effect is increased cholesterol but when I asked if my cholesterol would be tested after a few months the MO said it wasn't necessary as it doesn't increase that much. I had a dexa scan after six months and bone density had decreased. I'm waiting for the next one in Nov. a year and a half later. Maybe that's not here or there? Doesn't matter? When I had osteoporosis to start?
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Marijen, I have been getting bone density tests for at least 10 years, several years before my cancer dx. I get one every year. I am 68 so maybe being older and post-menopausal is the reason. Haven't had a problem on Tamoxifen or the Als in this area.
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That's great KB870
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There is a myth out there, that most doctors discuss side effects. Looking at these boards, I see very little evidence that occurs. It certainly didn't happen to me. I would have done many, many things differently if I had complete information. I was looking for information on my own, but there is a bewildering array of info out there, and sometimes my health, or my medical inflicted lack of energy interfered with my own research. Saying we are all supposed to research for ourselves is ideal, yet hardly practical for most of us. If we don't broach this topic, if we all pretend that the care we receive is just wonderful, then there will never be change. That is my point in bringing this up, that collectively we can advocate for change in a system that barely works, and seems to be dependent completely upon luck if you get good care or not.
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Here's the thing, to advocate for change all we have to do is ask our doctors about side effects. That really does not take a lot of effort. If we are too fogged out or tired to do that much, we probably can't process any information they give us. Everybody receives a sheet of printed information about SEs upon receiving their prescription. The pharmacist, nurse or doctor can go over that info if we ask. If any of them refuse to do so, it's time to change provider.
But maybe I'm missing something. Other than asking about side effects and expecting to get answers, what are we supposed to advocate for? And how do we advocate, other than switch doctors? This is not a law suit matter.
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Well, if it's noted in our files that "informed consent" was obtained --- what exactly does that mean? It's obvious many of us are not informed prior to undertaking treatment.
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My MO, when prescribing Tamoxifen, said it was "generally well-tolerated", but that there is the possibility of side effects. He said the most common is hot flashes, and after that fatigue. I started taking it thinking that I was unlikely to have side-effects but was waiting to see if I ended up having hot flashes. I never did have a hot flash, but I had very bad side-effects of other types (many side-effects, unfortunately). I went to my MO and he told me I was unlucky and that he had patients with bad side-effects before but they weren't common (I believe him). One side-effect I experienced was a terrible shift in my mood. I became what I describe as a "screaming banshee". Everything infuriated me! He said that he had another patient with terrible mood disturbances as well, but that she didn't really have an option to just quit, as she had 18 positive nodes. They were working with antidepressants to try to help her. With my multitude of side-effects and low chance of recurrence I quit Tamoxifen with my MO's blessing. I have a great doctor!
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I will weigh in here and say that package inserts and hand outs about side effects are, in fact, LEGAL documents far more than they are MEDICAL documents. A package insert about SEs might be there to inform you, sort of, but the true reason it is there is for LEGAL reasons. Those things are not written by doctors or researchers. They are written by lawyers. It is a means to avoid liability. It is a way to say 'told you so, you knew what you were getting into'. Drug companies have their medical promotional stuff written by their legal beagles, make no mistake! So while those package inserts and hand outs might give you a basic idea about SEs, the story of how a drug is tolerated, the anecdotal evidence of tens of thousands of people and years of drug use ... that stuff is NOT included. And unless your doctor spends his days off researching and digging for women's stories about tamoxifen, all he has to go on is the legal quasi-medical babble in the hand outs the drug companies provide to him. So... does he really know more than we do? Good question.
I am also, again (broke record) distressed when I see women who say 'my side effects were miserable so my onc said it was okay to quit.' Well gee, give your onc a big fat zero for creative problem solving. More like NO problem solving. I am so pissed off over this rigid, one size fits all 20 mg every day dose...what a load of crap! I do not believe it has to be all or nothing!
How many of you said you were hating the drug and your doc / onc said, okay, let's dial it back to 10mg a day. Or how about a 20mg tablet every Monday and 10mg a day the rest of the week? Or what about a 10 mg tablet every other day? Or 5mg every day? Where is that middle ground where your doc says, let's fiddle with this a bit because maybe you can get the benefits of this drug, or some benefits, without feeling miserable, let's not throw in the towel yet. Why can't this drug be tailored, taken in, let out, gathered, hem up or hem down, like a dress? Can't we make it work by changing it a bit? PRACTICALLY NO ONE SAYS THEIR ONC ENCOURGAED THEM TO TWEAK THE MEDS AND SEE IF IT HELPED. I feel this rigid refusal to try and find a happy middle ground, less SEs with some medical benefit, is a dereliction of duty on the part of our medical providers. I know there are some people for whom these drugs are not tolerable, no matter how infrequent or small the dosage. But there are those, many I believe, who could find a way to benefit from the hormonal protection and reduce their SEs if they would spend some time tweaking and seeing if it helped. No one is writing those posts. What's the deal?
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Good point runor. I have the discussion about dosage all the time with my doctors. I weight 103 pounds. It seems logical to me that I would not take the same dosage as someone who is 203 pounds. Some drugs are administered by weight or weight/height ratio but others are not. I know when my MO gave me half the standard dose of benedryl with my chemo because of my size and it still put me to sleep in 5 min. Hopefully when I start taking tamoxifen next month we will adjust ifnecessary also
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Well said runor and here's a thought - maybe they can't be bothered with tweaking because they already know the drugs are rubbish and tweaking isn't going to make a difference or maybe once they get you to take the drug, they've fulfilled their obligation, i.e. They tried and arenot concerned really if we continue. Afterall the deeper down the hole we go the more money in their pockets. Return business.
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Runor, I didn't put that in this particular post (because I've posted about this a bunch of times and tend to just get to the point when I respond now) but YES, my MO and I tried 10 mg first, his suggestion. When that didn't help I told him I planned to quit and then asked his opinion, he didn't tell me to quit.
(He also said we could try OS and another medication if I was up for it. I declined.)
Another edit to add that my MO still sees me regularly and has told me that if I change my mind about hormonal therapy to let him know. He said we can try another type once I'm postmenopausal if I would like, too.
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Again, what are we supposed to advocate for and how?
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I absolutely agree. The SE's from Tamoxifen have been a nightmare for me. It's been a year and a half for me on this drug. No chemo or radiation required. I have zero energy. Any recommendations on AIs without these type if side effects? Help!
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No, I was not warned.
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I see some of the writings on here, as conspiracy and intrigue. There is no conspiracy towards breast cancer patients. MO's are not sinister, sitting up nights and thinking up ways to torture you. I have noticed that some responders on this thread, also have conspiracy theories against radiologists on other threads.
I worked with my MO to find the best solution to the timing of taking Tamoxifen, which is a split dose later afternoon and evening. MO's are generally easy to work with and truly care about patients. Why do you think they are in this profession? It has to be the most dismal and depressing profession that one could imagine. It sounds like some people on here want palliative care, to be told you are just going to be fine and you don't need any medicine. It is fine to want that, until you are in hospice. That may sound harsh, but wake up, do what you need to do to stay out of hospice, and stop complaining. Go visit a stage IV board, and see what those women go through with side effects, medications, surgeries, bone mets, liver mets, and brain mets. I visit them all the time and have learned so much from those individuals through observation. I am going to do everything I need to do, to enjoy the life that I have worked so hard for, to enjoy the company of my family and friends, and to enjoy my interests.
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Michelle,
What "conspiracy theories" are you talking about? I have nothing against radiologists, I was simply stating a fact! I was never asked for permission to undergo a core needle biopsy following the 3D mammogram and ultrasound nor was I told of the risks associated with the procedure i.e., that cancer cells could be dislodged from the tumor, yet on my records it states: "informed consent was obtained to do a core needle biopsy prior to the procedure." LIES!!!!!
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A consent form is just a way the health field CYA. I also found a note in my file from BS that I had been advised of my choices of treatment, such as mx or lumpectomy, that didn't happen either. The first MO and the BS decided what treatment I would have. I was never included. Later on another note saying patient had no post surgery problems. Another lie. Each office visit I was asked if I was in pain and I replied yes. It still hurts nearly two years later, there is a very lumpy scar. I'm not even sure who really performed my surgery. Mos are easy to work with? I doubt you know my first MO. But I know two other women that dumped her
Michelle why are you suggesting conspiracy theories? When we are just reporting what our experience was? I have an idea you work closely with doctors and have a conflict of interest here. Possibly you are a Tamoxifen Sales Rep? You can't know what goes on in the exam room unless you have access to patient files. And then again those can be biased toward the doctor as we are trying to express.
Maybe when you get a little deeper into your treatment and know a little more, you'll have a change of heart.
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Personally I liked my RO. He was a man of few words but very definitive with those words. My MO was okay but not the best bedside manner. She was on a bit of an ego trip. My BS is one of the best in town but needs to work on his delivery.
I don't think for a second it was the intent of those who had less than satisfactory experiences to bash radiologists or any other doctor as a group. We are all different. Ditto with doctors. Given our long journey with this beast it's imperative to have a good rapport with ourdoctors.
It's no conspiracy or anything that resembles it. We have literally put our lives in their hands. We can and should demand the best care they can give us.
Diane
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What we need is for doctors to tell us the top 5 to 10 most significant side effects of each treatment or drug they prescribe or order. Look at all these entries here where the doctor said in their patient charting that they got informed consent, fully explained possible side effects, WHEN THAT NEVER HAPPENED. I am not saying law suit, but something needs to be done about the lack of disclosure by people we trusted to take care of us when we are at our most vulnerable. It shouldn't be some people are lucky and get good, ethical care, and for the rest, too bad.
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DAY ONE after biopsy, a breast center nurse mentioned the clinic on Tuesday. Can't remember why, but silly me, I imagined there was a class for the newly diagnosed on Tuesdays! And in this class I imagined there was an instructor who would go over all the details we needed to know about our cancer. We would ask questions, meet other new patients, etc. So later I ask about this imaginary class and what time it was? Huh? No such thing! Cancer is so big there should probably be a cancer center in every largely populated area and a class or classes - maybe at college extension iif nothing else. Anyways 2 1/2 years later my PT mentions a survivor group. Never heard of it, who knew? Well it doesn't matter now because I get so much information right here.
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Sadly, life isn't always perfect, and people tend to disappoint us. I also believe that anger is part of a cancer diagnosis grieving process. We have to get beyond this stage to become whole again. Sometimes dealing with anger, based on verifiable abuse, means taking action, not just posting on message boards. Just saying.
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