Warning: Feminist, anti-patriarchal question on hormonal therapy

Artista964

Spot on michelle. Every action in life produces a reaction. We hope it's a good one. If it's not and you can't do anything to change it then you need to develop ways to cope. Cancer also feeds on stress. If you can't change things for real and you dont want to try cbt then creating your own peace like yoga, tae chi, meditation are great relaxing things to do. The womens center here offers this stuff with discounts for bc folks.

There certainly is the need to be angry and sad but once it starts becoming more harmful than liberating, then it's time to change. You can't always change others. Changing you doesnt negate your feelings. Having had my mental breakdown which was the worse, worse than hearing bc, helped me cope through it, alone. I wish that experience on no one and truly hope people find peace with unchangeable things in life, and not just bc related.

NotVeryBrave

Bravo, runor! You hit the nail on the head! I had starting forming my own response to this earlier today and it somehow disappeared. I just didn't have the energy to reformulate it. You have spoken truth.

Every person is an individual in so many ways. Some want to fight. Some want to give up. Most (all) just wish they didn't even have to figure any of this out.

My recommendation for all is that you try the treatment that is recommended for you - unless you have some preexisting problem that interferes with that. No one wants to repeat any of this again. But there are no guarantees and one person may do everything and die anyway and another may do very little and live a long life. You have to try to determine what you choices you can live with.

No one should minimize another's choice or reasons for that choice.

Moderators

Dear members,

We have been following this topic and ask that you continue so share your experiences both good and bad in this and every thread in the BCO community but please do so with respect for everyone's experiences and choices. Not every thread is beneficial to every member. If you find this or any topic to be upsetting or stressful at any point then please consider the option of blocking it. The Mods

Traveltext

Good points Mods, thanks.

Conversely, if you like debate and are a fan of free speech, follow the discussion here by adding the thread to your favorite topics.

exbrnxgrl

traveltext,

Lea7777

There was a question if I've tried any other drugs since halting Exemastane after only 5 days. It took my body 30 days to recover from that toxic trip, so next up is Letrozole on which I've lasted 2 days more than I did on Exemastane so far. Maybe it will be ok.

Cancer, and the topics that surround it, hit all the buttons from personal values to family relationships to religious/spiritual beliefs to how we measure ourselves or others to how we handle pain and suffering--very existential stuff that can generate some heat. Mix in the free speech of an internet forum and sometimes it's combustion!

The content generated offers the posters, the readers, the lurkers, and those who will land here in the future an opportunity to learn, education, vent, reflect, sympathize, shake our heads, smile. Or not. Thanks to all who have responded and the moderators for offering those choices.

~Strength

Artista964

Debate is good. There are other threads that offer only support if you are in that phase of that's all you need to hear.

klvans

Well said Lea. I would also add cancer touches upon social and political issues from funding of research, to gender roles, and how society views and values the sexuality of women. It all generates discussion heat.

Traveltext

The topic was provocatively, but appropriately, titled: Warning: Feminist, anti-patriarchal question on hormonal therapy

And I believe, whatever their viewpoints, people responded as could be expected, with thoughtful comments based on their experiences.

Outfield

This is so, so true:

Cancer, and the topics that surround it, hit all the buttons from personal values to family relationships to religious/spiritual beliefs to how we measure ourselves or others to how we handle pain and suffering--very existential stuff that can generate some heat. Mix in the free speech of an internet forum and sometimes it's combustion!

Sometimes I find I don't even agree with a past version of myself.

Lea, I hope you find something not as horrible.

Icietla

17 hours ago runor wrote:

I am completely confused!

In my time on this forum I have seen what can be roughly categorized as two different camps. Those who want their pill with a spoonful of sugar and those who want it straight up. To put it another way, there are those who want information manipulated, edited, mollified, sweetened up or down to make it easier, less scary, more encouraging to swallow. Drink the Kool-Aid and we'll all go see Jesus, and that's a GOOD thing. Then there are those who want YOUR truth, as it happened to you, no holds barred, spit it out, tell it like it is, lay it on the line so I have some frame of reference.

When the Tell It Like It Is (to me) people speak up they are quickly slapped by the Spoonful Of Sugar group who accuse them of scaring newbies. NEWS FLASH by the time you arrive on this forum you have already had the shit scared out of you! If you have been diagnosed with breast cancer or going through that trauma, and you are NOT scared, you are the happy recipient of a lobotomy or your meds are too high, dial back that antidepressant so reality can get to you!

I resent, mightily, the self appointed righteous who get to determine that the purpose of this forum is to soft sell the breast cancer experience because that is the only way to 'support' someone. By feeding them carefully worded reality. By not getting too real. By not pointing out that sometimes things go right and sometimes they go wrong. By the way, if you are here, you have already fallen into the Things Gone Wrong category.

I was scared to take tamoxifen. I took it anyway. I read the happy, joy-joy posts saying I'm so lucky to have this drug and it's giving me a fighting chance and I dance and sing every time I take my pill, weeee! I also read the posts by people so miserable they quit. I read it all. ALL OF IT. And using my own brain, my own judgement and my own decision I took the pill.

I am not loving it. And to anyone who says NOT taking the pill is the same as choosing death I say piss off. That is the response of someone who very much wants to NOT know the truth of their situation. Breast cancer showed up randomly and if you survive it until death by other means, lucky you. If it kills you, unlucky you. And the bullshit we go through in between is all cards stacked in our favour - or not - no guarantees, so no one EVER ought to connect treatment obedience with survival because those two things, ultimately, are not connected. Short term in some cases, yes. In some cases, no. Long term in some cases, yes, in some cases, no. So what ONE HARD TRUTH can be concluded from this? We're all just flapping in the breeze.

BUT .... it is not my job to assume very new person here is too stupid, too weak to accept the TRUTH OF MY EXPERIENCE. That is insult to someone to add to injury. If you love taking your tamoxifen and dance in the street every time you pop a pill, SAY SO. If your hair is falling out, your joints ache and your vagina is a useless shrivelled prune SAY SO. That is the most valuable thing this site ha to offer, the REAL, unvarnished experiences of everyone. Good or bad. Equally.

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Icietla writes:

As I see it, there is no Spoonful Of Sugar camp.

There is a Tell It Like It Is (sharing one's own experience) camp.

There is a Tell It Like It Is Not And Has Never Been (spreading fear about treatment/treatment effects one has never had) camp. Common earmarks of that camp's Kool-Aid are the words "we," "our," and "us."

Again: Perhaps you have seen posts complaining of "the" dreadful side effects "we" suffer from endocrine therapy -- or that "most of us" have suffered and been unable to tolerate. Think posting content of that nature might make some misleading impressions? [No response required.]

dtad

Hi everyone...I've been following this thread for awhile now and have yet to respond. As a lot of you know I refused anti hormone treatment from the start. I had many well informed reasons. Ive definitely been judged in this forum. Mostly by people that have no side effects from it. We all have completely different circumstances and thus make different decisions. I personally think we should have better treatment options. The non compliance rate is just too high to say its an effective treatment. I'm not disputing that it significantly lowers recurrence rates. However so does exercise, weight loss and dietary changes. I take DIM, melatonin, baby aspirin, mushroom extract and vitamin D. I'm 3 years NED. IMO we need to respect and support each other and all personal decisions made. Good luck to all navigating this complicated disease.

Wildplaces

ahhh Runor - you certainly have a way with words - the paragraph above " I was scarred to take tamoxifen " - strongly resonates with me. Thank you for all you bring!!

I am going to hit the antipatriarchal button a little. Someone on the Australian thread asked me if I was so passionate about breast cancer and fair treatment options before I got it.

I told her that I was always an advocate for women' s health but my focus was different.

What was I busy trying to sort out before I hit the chemo infusion rooms ?? - otherwise known as my little enforced sabbatical - See we still suture vaginas in the dark. No, really - women following child delivery get 5-8 cm ( sometimes more ) vaginal/perineal tears put together by often junior residents under dubious local anaesthesia in the delivery room with only a small spotlight shed into what is along, dark and bloody operating field. Any male perineal tear gets an operating theatre. Go figure, yes, I know logistics. The stress incontinence rate above 50 years of age is...

Lea - I take Arimidex and I hope I will continue to be able to take it.

For me you have a huge and valid point - and so does dtad in the post above - a treatment where the compliance rates are so low because the side effect profile is so high even in the face of cancer threat is far from effective - it is however all we have now.

It should be ok to discuss that - it should be OK to ask for more from the pharmaceutical community - it should be OK to have the lights on.

Lea7777

I have read and thought about ALL of your comments.

There are a couple of topical treatments out there that I know of--maybe many more I don't know about. They would likely generate less discomfort and less controversy. One is "Tamogel," currently being studied at Northwestern. Phase 3 trials will be underway soon. "Tamogel" has been in the works since at least 20 - 0 f'in - 4. (2004) The other was letrozole delivered through a patch on the skin, studied in China back in 2010. Both of these ointments/creams go ON the breast and are not taken orally. Both showed much promise in studies, from what can be gleaned in public documents by me--a layperson. But from what my surgeons and oncologist tell me, there is nothing on the topical front expected anytime soon. One person a little more on the inside of these studies mentioned the need for pharmaceutical profitability in order for such products to become reality.

I wish there was a little like button that I could click to acknowledge many of your thoughtful remarks.

Meow13

When I posted about understanding why people take a break. I was not saying people shouldn't say it like it is. But when you start suggesting a poster may be delusional I think it crosses a line.

ksusan

I assume we all agree that we need more effective options with lower side effect profiles. I assume we also agree that everyone needs to make their own decisions about which interventions they choose.

exbrnxgrl

I like your assumptions, ksusan. I'm quite pragmatic about the treatments, in that right here and right now, I can only work with what exists and hope for better in the future. Almost 7 years on AI's, at stage IV, and I am alive and NEAD despite only having the currently available weapons in my arsenal. I'm not going to knock them too much and will always hope for better but I am grateful that these less than perfect treatments exist.

Moderators

exbrnxgrl, wishing you MANY more years with successful treatment! Thanks for sharing.

pupmom

I hope we have more effective and less difficult treatments for ALL cancer patients (HOW ABOUT A CURE). We bc patients aren't the only ones who suffer.

Traveltext

Like exbrnxgrl I'm also going with best available treatments. If, despite more money being thrown at this disease than virtually any other cancer, these best-practice treatments fail, so be it. Because men are mostly excluded from trials, we are making decisions about drugs untested on us. Going through treatment as a man with this disease nakes you realise what being a minority is all about, and to be constantly excluded from awareness campaigns because we are an inconvenient truth for the pink charities is a further blow. Despite all this I'm thankful I have good prospects, unlike my mother who was treated in the pre-chemo, pre hormone blocker days. She only had a couple of years to say goodbye to her four young boys.

As with ksusan, I make decisions on which treatment path to take based on medical advice and what I read. I would never propose prescriptions for anyone else and I'm sorry that some people here are having a hard time. Unfortunately, this is a shitty, incurable disease, that you die with, if not of. And the truth is, you don't have full control of your medical destiny.

Moderators

Indeed, we wish you ALL MANY, MANY years of effective treatments!

Michelle_in_cornland

Exbrnxgrl, congratulations on keeping NED. That is wonderful. Hopefully, the meds will keep you in that state for a long time to come. Thank you for sharing your opinion with us.

KSusan, you are one of my fav and always a voice of reason.

Mods, thank you for being actively involved in this discussion.

Egads007

The truest form of debate is done without anger or judgement, otherwise it’s just an argument. Debate leads to discovery and progress. I understand that as humans our experiencesand passion about the subject at hand can sometimes get in the way. I’ve been guilty of that myself in the past. I can honestly say I’ve learned a lot from this thread, from both sides of the coin. I’ll keep taking my meds and appreciate the information, opinions and experience of those who choose not to. I see it as a win-win. Peace to all

Lea7777

exbrnxgrl, Wow! You are doing something right! Wishing you the best for many more years!

runor

Icietla, I was wrong and I apologize. There is only ONE camp. One. Personal experience. No one has to prove anything aside from this is how they feel, this is how they see the situation, this is what they decided to do and this is why. That is as complete, as whole, as honest and as helpful as we can be. If a person does not want to read about other people's experiences, then this is NOT where they should be. If you want to do hard research, get off BC.ORG and go read medical journals. But if you are HERE, conversation is what you can expect. ( Conversation is people sharing their experiences.)

The Tell It Like It Is Not and Has Never Been, is not a camp. It's an opinion. Like every other opinion. Who can say that the way I tell it is NOT the way it is? No one. Absolutely no one. No one can point at my experience and say I'm wrong and telling it like it is not and has never been! What happens to me happens to me and I am the ultimate authority on that, despite anyone thinking otherwise. All I can do is share my journey. That's all any of us can do. So if someone is sharing their views and experiences then, for them, that is how it IS and EXACTLY how it has been. True story.

Lisalooloo

Brand new here and your post means I'll stay. You're my kind of thinker and you're right, I've already had the sh*t scared out of me - nothing can sink me now.

runor

Lisalooloo, when I first got called back because there was something weird on my mammogram, I freak out and immediately called my friend M. At that point I knew nothing other than they wanted more pictures. I fell apart. I could barely function. I quit eating and sleeping, just because I had a 'suspicious' mammogram. I said to M, oh my god this might be cancer! And she said, yes, it might be. I said, what the hell will I do if I have cancer?! She said, you'll do whatever you need to. She did NOT quote me the flowery statistics about how most weird boob things turn out to be nothing at all. She did not talk me out of my fear, down play it, neutralize it, minimize it or make me feel stupid for being scared. She just plainly and honestly said yes, you might have cancer. You might not, but you might. And you will do what you need to. I have been FOREVER grateful for her solid honesty. She let me feel how I was feeling. She stood with me in my fear. She did NOT launch into a speech about how I need to be positive and look on the bright side. She did not tell me how fortunate I was to be a white western woman with all this wonderful technology at my disposal. She just said yes, you might have cancer. It is shitty as hell. Period.

All I can do for anyone is tell what happened to me, how I felt about it, the decisions I made and why I made them. That is an unassailable truth, despite those who would label it otherwise to gain ground for their own perspectives. We all have different truths and it may make some of us uncomfortable and we should be able to talk it out, ask questions, attempt to understand each other's perspective which is a whole lot different conduct than putting on the boxing gloves and whacking each other. I am all for lively discussion, but draw the line at assault.

Icietla

Apr 15, 2018 12:01AM runor wrote:

Icietla, I was wrong and I apologize. There is only ONE camp. One. Personal experience. No one has to prove anything aside from this is how they feel, this is how they see the situation, this is what they decided to do and this is why. That is as complete, as whole, as honest and as helpful as we can be. If a person does not want to read about other people's experiences, then this is NOT where they should be. If you want to do hard research, get off BC.ORG and go read medical journals. But if you are HERE, conversation is what you can expect. ( Conversation is people sharing their experiences.)

The Tell It Like It Is Not and Has Never Been, is not a camp. It's an opinion. Like every other opinion. Who can say that the way I tell it is NOT the way it is? No one. Absolutely no one. No one can point at my experience and say I'm wrong and telling it like it is not and has never been! What happens to me happens to me and I am the ultimate authority on that, despite anyone thinking otherwise. All I can do is share my journey. That's all any of us can do. So if someone is sharing their views and experiences then, for them, that is how it IS and EXACTLY how it has been. True story.

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Icietla writes:

Whether one has had personal experience taking a particular medicine is not a question of opinion -- it is a question of fact.

>>So if someone is sharing their views and experiences then, for them, that is how it IS and EXACTLY how it has been.<<

First, please, let us agree on terms -- let us not conflate any BS "views" -- uninformed by personal experience -- with views formed from having personal experience with these medicines.

>>So if someone is sharing their views and experiences then, for them, that is how it IS and EXACTLY how it has been.<<

And if they leave the telltale clues out of their diagnosis and treatment history indications, and they go into some particular discussion section/s relating to treatment/s they have never had, complaining of horrible, intolerable side effects of treatment/s they never had -- saying things like Most of us shortly quit that (whatever treatment they have never had) because we could not stand the terrible side effects -- that is Telling It Like It Is Not and Has Never Been.

Numerous members have stated in their postings that BCO content such as that made them afraid to use these wonderful, life-saving and life-extending medicines. Redundant studies say that some forty to fifty percent of them will die younger from breast cancer because of those decisions from their fears. Prophylactic mastectomies and these medicines are the best means we presently have to get this epidemic under better control.

-----

Peace and Blessings, All.

NotVeryBrave

Why is this being dredged up again today? When one person picks and chooses quotes from another - out of context - it becomes increasingly confusing.

How about if we each try to answer each other's questions as honestly as we can and from our own experiences? And let's treat one another with understanding and empathy. No one really knows what it's like to be in another's shoes.

Moderators

We're chiming in again to say that we agree that this should perhaps not become a re-ignited topic. Indeed a great approach is for each person to try to answer questions as honestly as they can and from their own experiences, treating each person with understanding and empathy. Thanks, All.