Aromatase Inhibitor and just walking away.

Michelle_in_cornland

Lita, there is alot of "infighting" because lives are on the line. While you might be well capable of seeking and using information, many need an assist. To make sure that everyone gets a fair chance at hearing everyone's truths, it is important to contribute to a thread that is in line with what your situation is and not hijack some other person's thread. This has happened on numerous occasions, so being a new member you might have not seen that. It is about courtesy to the original poster, who in this case took 5 years of Tamoxifen. Lives are too important, to rely on a he said, she said environment. That is why it is important to work with your Doctor in deciding medication issues. Doctors, pharmacists, radiologists recommend this site to their patients, as a source of support. In an effort to keep threads in order, for future readers, we must separate threads by ideas and facts. Those that are pro-antihormonal, those that are against antihormonals, need their own space clearly labeled so that they each have their own dialogue. I know several MOs, Rads, Pharms, that are on here, trying to help keep the dialogue safe for everyone.

Peetie1

Michelle,

I don't want to start trouble, but how is the sharing of ideas/studies that you may not agree with "unsafe?" People come to this site to get an idea of what it is like to take anti-hormonals from the people that are taking them. The good, bad, and ugly. I am new to this site, and I am here for information. I do not want to see this important information censored. The new people that are coming to this site are every bit as capable of making an intelligent, informed decision as those that came before us were!

jen1

This thread is the appropriate place to discuss these issues about hormone therapy.

jen1

I am trying to update my profile. I started on Letrozole, then aromasin(exemestane) Then arimidiex.I have had difficulty on all three.

snowbird1943

I too am fairly new on this forum and would hate to see it changed. I NEED all this information, positive or negative, to make an informed decision.

Owly

1st breast cancer - 2006. Surgery, chemo, radiation. 3 years of Tamoxifen and 2 years Arimidex.

2nd breast cancer- Dx November, 2016. DCIS. Double mastectomy and lattisimus dorsi reconstruction in February, 2017. This has been nothing short of a nightmare. I have been in pain and very tight 24/7!! Developed hematoma 2 days after surgery. I have had 3 surgeries so far this year and a 4th is upcoming to repair the damage from the hematoma to my breast. I was ER/PR positive. I had 3 lymph nodes removed. They were clear! My oncologist wants me to take Aromisin although I have NO breast tissue and clear lymph nodes. I am walking away. I am walking away from cancer drugs and oncology visits. I don't want anything else to interfere with QOL.

Michelle_in_cornland

Many people decide against taking anti hormonals and don't take them at all. How can they offer an opinion on something that they have never tried? The person that started this thread took tamox successfully for 5 years. Don't hijack someone else's thread. Start your own and keep it uncensored. There is also a steam room for anger in another forum, where you can say whatever you want.

jen1

This thread is not being hijacked. Please be respectful of all opinions.

Lita19901

Michelle - I don't understand the basis for your anger.

From reading past posts it seems that some of us are individuals who are facing a very difficult decision between quality of life vs. longevity of life.

For me, this is really, really hard. To even consider refusing treatment speaks to how powerful my reasons are for doing so. Your words are making me feel ashamed, as if I am weak and pathetic for even considering this path.

You might not agree with my decision - when I actually make one - but at least grant me the right to make an informed decision. I need this interchange of differing ideas.

Brutersmom

It looks like the community has intervened and removed some of the argumentative post. I suggest we move on from her as we were before 10/5 and get back to discussing Aromatase and just walking away.

jen1

Well said Lita. Bless you my dear.

marijen

Thank Goodness! Brutersmom

Michelle_in_cornland

Lita, I am not angry, just have seen this scenario play out too many times, with too many persons dying from breast cancer. Forty thousand persons die every, single, year, from breast cancer in the United States. If we have tools, technology and medications that can help prevent a person's cancer from becoming mets, we need to do everything to push that 40,000 number down. I can tell that this is hard for you, being triple positive is a huge cross to carry. Even the more reason for you to work with your doctor, nurse practitioner, cancer center, to find a method of treatment that works for you. If you truly want an informed decision, ask a person that actually takes the medication, not the ones that refuse it from the onset. If a person is older than 75, has a life threatening illness, then I say, you need to think twice. But, to arbitrarily discount the value of medication, can effect the longevity of life. I do think that the person who started this post, who had taken Tamoxifen for 5 years, would not appreciate the hijacking of the post. A person from the anti med camp, really should consider starting their own thread.

jen1

This thread is not being hijacked lets move on.

SJI

Michelle_in_cornland: Using the term "anti-med" and drawing comparisons with anti-vac folks is uncalled for in my opinion.

No one is telling you what you should do so please stop insulting those of us who are wrestling with the decision of what course of action to take. Everyone's situation is different. There are pluses and minuses to every decision and people deserve to be treated with respect and not judged for difficult choices. BC is awful enough without adding such rancor to what should be thoughtful open discussions.

jen1

Well said SJI

Lita19901

Michelle,

I'm not sure if it is acceptable to this forum but I am requesting that you refrain my responding to my posts. I understand your perspective but I don't need to get hammered about this anymore.

Lita19901

SJI - thank you for posting what I was having trouble saying.

dtad

Michelle..I disagree with your statement that those of us that haven't tried anti hormone treatment cannot have an opinion on them. I did extensive research on anti hormone therapy and made an informed decision on what was right for me. Please do not tell me I can't have an opinion! This thread has not been hijacked. The title of the thread has more weight than the original post. Many times the original post is years old and most of us don't even read it. I simply do not understand why you have a problem with any personal decisions made. We are not judging your decision, please do not judge ours.

Lita19901

# 7 of the Community Guidelines states: No judgements, please. Everyone is just trying to do what is best in THEIR particular situation. Nothing nice or supportive to say? Move on without saying anything.

___________________________________

Why does this not apply to "walking away" from anti-hormonals at any stage of the game, including the pre-game?

The vast majority who come breastcancer.org are able to follow the standard of care prescribed by the medical community. In this wicked game we are all forced to play, they have been dealt a better hand. They have facts and statistics to support them, and they are welcomed with open arms, they get virtual hand-holding - as long as they play the game the "right" way.

But there are those of us with differences that cause us to step off that path. I think we deserve to be treated with as much kindness, with as much acceptance, with as much respect as those who follow the straight and narrow. We don't deserve to be sent off to another thread, as if to a padded cell, where our thoughts and questions won't hurt anyone.

And I have another question: Why are people who stop chemo because of, say, neuropathy, comforted while people who stop or refuse anti-hormonals are treated with hostility?

Brutersmom

Michelle, My question to you is, why are you here on this thread? Are you thinking about walking way? You have the rights to your opinion but please as Lita said keep them non judgmental. As for the original question. Threads evolve. The title is what brings people here for a safe conversation. Thank you.

ErenTo

I just want to address the falsehood that some of us are trying to shut down anti-HT conversation on BCO. It couldn't be further from the truth, if anything, it was some of pro-HT comments that were deleted. If anything, I think people like us should be more vocal

If you scan the first page of Hormonal Therapy - Before, During and After forum, the vast majority of headings are discussing negative aspects of these drugs, which makes sense as it is THE place for it. I'm just stating what conversations are ongoing out there and trying to debunk the mythology that 'pill-pushers' like us are attempting to censor some of you. And it's ironic, because I stopped taking aromasin due to numerous issues, so I'm far from thinking in black & white terms or censorship.

And I don't get the 'respect' comment. This game is not about respect, validation or competition. It's, at times, about life and death and living well. If I think taking these pills delays my death, or if you think your quality of life is improved by not taking these drugs, then both views are valid. Discussing one side of the story, doesn't invalidate the other.

Of the topics below, only one can be considered positive. The rest are discussing how everyone tries to navigate this maze. So if some of us try to encourage newbies to even consider taking these medication, it's not because we think they're stupid, as some of you stated. It's about giving a more balanced view based on our personal experiences, evidence-based medicine and data. And no, there are no guarantees in life, these pills don't save us 100%, and we all should be aware of this nuance.

When someone takes the time to post on these forums, it means they're still trying to make a decision. And what is wrong in trying to make life a bit easier for them by saying it's not as scary as you think? It's just a point of view and doesn't threaten or invalidate other views. If you have a strong argument or story, then bring it on.

Aromatase Inhibitor and just walking away.

I have chosen to refuse Tamox/AI

Does anyone request a hormone test before starting Arimidex?

For Arimidex (Anastrozole) users, new, past, and ongoing

What questions did you ask your MO about Tamoxifen?

How do you Coexist with Tamoxifen SE?

How Many are doing 10 years on Aromatase Inhibitors

Uplifting and Lively Messages. No holds barred..

FEMARA

To take or not take Tamoxifen

Bottle 'o Tamoxifen

Tamoxifen and Hair loss?

Scalp pain on arimidex

Stopping Lupron

Acne breakouts on tamoxifen

Taking Arimidex without Prolia or Other Bone Medication

Migraines on Tamoxifen/Hormone Therapy

FDA Approves Verzenio to Treat Advanced-Stage, HR+, HER2- BC

Location of Fat May Affect Type of Breast Cancer Risk

Arimidex and total knee replacement

Topical tamoxifen

Scalp pain from Arimidex?

Did anyone have rash from Femara?

Doing Well on Aromotase Inhibitors (AIs)

Neuropathy from exemestane?

Life on aromasin

AIs and blurry vision

stage I and looking for advice for treatment...

ErenTo

And I hope mods don't delete my post as they did some of my previous ones (which was due to complaint I believe). It is a valid pov which needs to be read.

Falconer

Eren, thanks for providing a comprehensive list of links to related discussions. I'm on many of them. I've had lots of questions and answers received, for which I'm grateful. I think the truth is that cancer is scary; a cancer diagnosis puts fear into one's life that had not been there before. And it's because we all know that people die from this disease. Will I be one of those people? Perhaps. But I tell myself again and again to be mindful and to remember that I am right now alive and am happy and grateful for the treatments I've received that have extended my life. I'm not who I was five years ago; none of us are. That's life.

arby

Why take this medicine if I have no nodes affected by BC, have no breasts left! , and after 2 recurrences always caught early Stage 1? I've always wondered if my quality of life would have been way better these past 10 years had I waited to begin this journey a couple of years. the old WAIT and SEE approach. Has anyone else felt that way? 33 rounds of radiation was a waste since the cancer returned in less than 2 years. (that had been treatment following a lumpectomy which was the standard of care in 2007.) I was hormone negative and the her2 score was really inconclusive. But with the recurrence in 09 I was Her2+ and still hormone negative. Have 23 fewer lymph nodes on one side where the breast was removed.(all clear) After starting chemo, 3 rounds in, I developed radiation recall. SO RC presents itself on my chest as badly burned skin as though I took radiation all over again. I developed cellulitis and had a miserable 5 weeks of throwing stomach sickening antibiotics at the infection! My onc took every precaution he could wondering which of the 3 chemo drugs had triggered the recall. But we decided to proceed for treatment #4 leaving 1 drug out. But 5 and 6 were back to full treatment plus Herceptin as usual. My 2nd recurrence came in 2014 the remaining breast was hormone + and her2neg. Go figure! It was removed and I was put on Arimedex. which does have SE's. Do others take this drug if they have no breasts left? Our bodies need estrogen to stay heart and joint and skin healthy. Our sex drive is dependent on it. We need it for a good night's sleep. Its hard to believe in the benefits when I have nothing left to attack. I've seen no research that proves it prevents metastatic disease. SO fill me in as to why I'm taking it...what are the specific benefits?

Lita19901

Erin - I'm quoting you here: "And I don't get the 'respect' comment. This game is not about respect, validation or competition."

Fortunately, the Moderators do, as is evidenced by the word "respect" is used at least 4 times in the Guidelines.

Icietla

arby, I have no breasts, and I take an AI. I am very glad to have it.

For two weeks following my excisional biopsy, a bit of my fragile tumor tissue left behind in the blood-filled cavity had blood sloshing against it, presumably eroding it and putting a soup of it into circulation through my bloodstream.

Even if all the visible breast tissue has been removed in surgery, that does not mean every bit of breast tissue has been removed. Any remaining breast tissue, invisible to the Surgeon, cancerous or not, is holographic in that it can be reproduced from a single cell -- like picking the mushrooms from my yard does not prevent the growth of more mushrooms, because there are always some mushroom spores left behind.

"Our bodies need estrogen to stay heart and joint and skin healthy."

As far as I know, most of us on AIs are doing just fine. Skin rash or itching is indicated to be a less common side effect. I do not find anything else indicated relating to AIs and skin health. ?????????

"We need it for a good night's sleep."

I usually sleep for about sixteen to eighteen hours a day. When I do not get enough sleep, I catch up on it by sleeping more later.

ErenTo

Falconer, well said. And scary is the word we can agree on.

Lita1, my point was I don't get 'respect' in this context. Me saying yes to HT doesn't disrepect you, disrespect may be your perception, but the fact that I don't mean disrespect remains regardless of your or my perception. Same with you saying no to HT doesn't disrespect me either. Respect doesnt even enter my mind. We can keep going on this, but I will stop going down this path. It is a waste of time.

marijen

I just looked at every single page of this thread and it has ALWAYS been about problems with side effects of anti-hormonals and thinking about walking away. Just because MTI made it through five years does not mean it's a discussion about going another five years. She went another three months and she hasn't been here since August. Most of the rest of us have been here from the near beginning. Still don't understand how moving it or renaming it is going to make a difference in the discussion. I would appreciate not being attacked again for my observation. The hostility from those who don't post here is uncalled for. Even claiming we shouldn't be jumping around to other topics and these persons are doing just that.

Lita19901

Erin, the respect I'm speaking of is the respect to make my own treatment decisions without being told I'm wrong to do so.

Can't we please just live and let live? And yes, I realize the irony in my request.)