Bottle 'o Tamoxifen

I would like to add that the person who didn’t take the medicine and had a recurrence might have had a recurrence even if they did take the medicine because for some it just doesn’t work. Obviously if it always worked then noone would be getting a recurrence. Also it’s not very ladylike to have balls. Just saying...

Marijen, I appreciate a woman who wears her balls well!

Michelle, it is good to hear that tamoxifen has been easy sailing for you and I hope it continues that way! Unfortunately, not everyone can claim the same easy time with it. Even more unfortunate is that easy time or hard time in no way indicates effectiveness at keeping us disease free! So we all plow ahead anyway....

^^We need a like button. Happy Thanksgiving Michelle

Love the positive Tamoxifen posts!!!!!! Not everyone has terrible side effects and I really hate that I fed into some of the more negative posts before I started taking it. Its just not right when some posters imply or down right state that the terrible side effects are inevitable, not sure what the point is sometimes. I'm thankful that it's an option for me and I'm hoping for the best with it. Happy Thanksgiving everyone!!

Runor: I see your point but I think it's one's responsibility to do everything you can do to keep it at bay. This woman NEVER took Tamoxifen and initially refused chemo. If someone was diabetic and didn't take their insulin, we would likely say they should have taken it. I get that sometimes the side effects make it undesirable to continue taking but as was stated, not everyone gets those side effects. I will say that my side effects have improved some lately. But I have kids and I couldn't imagine not doing everything I could to avoid a recurrence.

Maybe a better analogy is seat belt. Fastening your seat belt doesn't gurarantee that you'll survive a car crash, but tests and trials have shown that you have a much higher chance of survival if you have your seat belt on. Tamoxifen and seat belt outcomes are based on large populations and don't give an individual's personal risk of death. So the meme that keeps coming up on this site that 'it's a crapshoot and women still recur on these drugs' is misleading and a bad understanding of some basic statistical concepts.

I appreciate the positive outlook, this week especially.

I have only been on Tamoxofin since early September after finishing chemo. The main side effect I have noticed is EXTREME peach fuzz on my face. I also get the occasional dark hair, but that's not the problem. I'm talking 3mm long hairs along my jawline and cheeks (ok, I'll say it: it's like a blond beard). Anyone else have this SE? I ttribute it to Tamoxofin but maybe it's post-chemo crazy hair regrowth or maybe it has to do with my herceptin infusions. I'm considering dermaplane to get rid of it. Would appreciate any advice from you all!

Runor: I am really sorry you are in so much pain. I totally 100% agree with you that if there is a small probability that Tamoxifen will help you, then it definitely should be considered against the negatives. Believe me, if I could get out of taking it, I would.

Ditto on the fuzzy face and suit of pain. I bought a Remington epillator at Walmart that really does wonders on the peach fuzz. As for the almost constant headaches, bone pain, wobbly joints, hot flashes, bald spots, crepey, dried out skin, lack of sexual interest, weight gain, kraft disease, fatigue, insomnia.... you proabaly already guessed - I take my pill every night and wonder what normal will feel like in another 2-1/2 years (if MO says take it another 5 years - that's where I draw the line in the sand). Barely hanging in there and seriously wondering if I should try a different drug or if this is as good as it gets.

Runor, that's hilarious. I've been there - including the screaming :-)

Blownaway, thanks for the epillator recommendation. I'll suck it up and give it a try.

Wishing everyone an ease to SEs and a restful Thanksgiving!

Or, it could have been the exact same story for her.

This is victim blaming. This is finger pointing. This is,' you got cancer cause you didn't follow the rules, neener, neener.'

I remember when I was a kid in school we used to write SSFK on our arms if we had to be anywhere near a boy. It stands for Super Sonic Flea Killer and it protects you from getting boy fleas on you. We all knew that if you were near a boy and did NOT write SSFK on your arm, you would get boy cooties. Other girls would not play with you if you had boy cooties.

It seems to me that declaring that tamoxifen (or whatever treatment) will save your life and you must Follow The Rules and only then will you be saved, is just plain bullshit. There are too many women who wrote SSFK on their arm and ended up with cooties again anyway! It is so easy to swoop in after the fact, see someone who didn't take tamoxifen and deduce that their returned cancer is 100% attributable to their non-tamoxifen taking. And that is just. Plain. Not. True. We have NO WAY of knowing that tamoxifen would have had any influence at all in their recurrence!

Now, if you want to argue that tamoxifen is the best we have to offer, if you decide to write SSFK on your arm and hope it keeps the cooties away, go for it. There is science to back up that this will help you. But we also know in many cases it does NOT help so... roll your dice and hope for a good number. But the absolute connection of no tamox and a recurrence is absolutely wrong. In fact, it's cruel.

We want to think that we have not gotten cancer again because we did everything right. We want to think that we had some influence over the vagaries and mysteries of our cells. It reassures us and makes us feel separate from those who made 'bad choices' and didn't take their pills and now they got cancer. Assigning blame provides a distance between us and them, a false security, a plea to the cancer gods, look at me, I'm doing it right, I don't have cancer back again, I AM doing it right! I knew it! Everyone else is wrong and got cancer because they are stupid and deserve it. Magic thinking. Religions are built on this one track thinking. The idea that when something bad happens to someone it's because they did something wrong to deserve it. It's the belief in a punitive, punishing, score keeping god. That is offensive to me. This disease does not care who you are or what you've done and if it wants to come back, it does. Tamoxifen or not.

Right, Mollie. I think that back in the year 2000, doctors did not know as much about the significance of using anti hormonals to prevent disease progression. This women was prescribed Tamoxifen, but chose not to take it. She looked to be about 72 or 75ish, so she would have been late 50's or early 60's at diagnosis. She at least had 16 years without a disease state. It made me shudder, knowing that she was sitting right in front of me with breast cancer in her bones. My checkup went fine and I am thankful.

I've been on Tamox for a year exactly and BCI tests show that I will not receive value in extending for another 5. My plan is to take it for another 4 years but easy for me to say in that I have not had terrible reactions to it like some women experience-- for sure I have hot flashes still (less with more exercise) and muscle aches, easier bruising, less libido. If I take Tamo in morning, it gives me headache so I take at night with 3 mg of melatonin, D3, B12 and DHEA (from algae). I take it because (according Oncotype DX) the data says it lower recurrence by 40% ( AIs would have lowered to 50% but much harsher side effects and risk to good bone health)...each evening I take it, I say thanks for helping me to starve off any BC cells left behind.

I spend a solid year reading as much as I could about my kind of cancer and how someone as healthy as me with no family history could possibly get BC...still no definitive answers but I believe that I was somehow exposed to something that altered my cells (probably all those bloody cancer-causing chemicals my parents put on our lawn in the 1970s when I was growing breasts...#banroundup!!) and then I created an environment in my body (the soil) for the cancer seed to grow-- namely, too much wine drinking, too much sitting, too little daily exercise, too much stress. So I see my BC as a divine tap on the shoulder (thank you Chris Wark at www.chrisbeatcancer.com) to make permanent changes in my life to make my body less hospitable to cancer and more supportive of my amazingly fierce immune system.

In support of my immune system (and healthy cell ecosystem), I stopped drinking any alcohol, doubled down on my plant-based whole food diet, exercise daily (even if just 20 minutes rebounding to break a sweat), meditate daily (headspace app for 10 minutes), regular acupuncture and massage (local cancer center has good rates) and I found a new job where I work with less toxic people. Also I try to monitor what I think (as you think so shall you be) and replace any thoughts of anxiety with thoughts about how strong my body is and the absolute fact that so long as I have an immune system then my own body is capable of killing any cancer cells circulating in my body. After all, I grew and delivered a perfect human being inside my body (while I was going to work, living my life) so there is no reason that I cannot create the environment within my body to keep BC from ever returning.

The way I see it, to have a different outcome (not getting cancer) I need to have a different lifestyle than I did pre-BC and every day I get up and recommit to my new cancer-free life.

Happy Thanksgiving Women!

I’m very interested in all the numbers everyone seems to get. My MO is not a numbers person and puts me off when I ask. She hasn’t mentioned any of these tests at all. I’d like to talk to her about them, though. So what things should I bring up?

I’m ER- and only weakly PR+. I don’t see many with my combo and I only found one small study of the effectiveness of hormonal treatments (not much). However, I’m going to take the tamoxifen for 5 years, unless some SE pops up that I can not tolerate.

Michelle, I had responded earlier, then deleted, but deep in the pit of my stomach there is a tight, unhappy ball. I must speak.

Victim blaming is a thing and it should not happen, but it does. Right here. On bc.org. It goes like this, 'If only she'd done what she was told, taken the pills the Medicine Man gave her, held her tongue the right way, cut out all gluten, coffee and hair dye. If she had followed all the rules, bent to the will of the masters, HER CANCER NEVER WOULD HAVE COME BACK!"

This is, as we all know, a big, fat lie. A horrible lie. It is dipped in blame and guilt and fear and threats. Because the TRUTH is that you can do everything you're told, make every change possible and this damn filthy disease can come back again. No matter what. That is the truth. Read the stats here. It is written all over the place in black and white. Women who did it all and got cancer again anyway!

In my years on this earth I have noticed some patterns. People who are lucky, people who seem to escape the slings and arrows the rest of us get hit with, assign this luck to some great deed that they themselves are responsible for. It's a form of denial. Falsely believing that you have any influence makes you feel safe in an unsafe world. It gives you a false certainty when really, no certainty other than death and taxes exists. But the lucky, the blessed, boy they like to crow about how They Did It All Themselves With Good Choices and Right Living. Bullshit.

I cannot imagine the betrayal and gut kick of placing your faith in all the treatments only to have them fail. Blind faith will walk you right of a cliff. I feel that women need to understand how science ups their odds, but does not and cannot remove uncertainty from the equation. Women need to understand the price they will pay in REAL suffering to gain MAYBE life expectancy. Eyes wide open! Science is wonderful, but it asks a HUGE sacrifice of us, that we be willing to bear side effects and permanent damage that may make our remaining years here a living hell. For some of us, it will be worth it. For others, it will not.

The TRUTH, Michelle, is that lady could have taken 5 or 10 years of tamoxifen and had the exact same outcome! It is cruel to make a post that suggests, in any way, that she is to blame. That she 'would have done things differently'. Or should have. That idea is preposterous and smacks of coercion and threat. Because the TRUTH is that science shrugs and offers us the best they have. Is it good enough? No one knows. Will it guaranteed me life? Nope. Can I suffer through this and die from breast cancer anyway? You bet. Is it just as reasonable to refuse some treatments since none of them are guaranteed anyway? Absolutely. No blame. No shame. No guarantees. Just all of us finding this disease in our breasts and hoping to god it isn't the end of us. But to say someone should have done something different and she'd be healthy now - wow, no place for that falsehood here!