Respecting That Everybody Has a Tough Choice to Make

Peetie1

I am new to breast cancer and to this site. I have been disappointed as I notice that there seems to be a bias toward people on this site that have/are making a different choice regarding treatments, especially regarding anti-hormonals. Cancer is tough, the treatment decisions are tough, and everybody's situation is different. Is it possible that we could support one another even if we are choosing a different path for treatment?

Peregrinelady

I think if people are encouraging others to try anti-hormonals or not give up when the side effects kick in are just looking at the statistics. Right now they are the best chance that many of us ER positive women have to help prevent recurrence. Do they work for everyone? No, but I am wiling to take the chance that they will work for me because I watched my twin sister die from MBC, and I would like to spare my family that heartache at all costs.

SummerAngel

Actually, Peregrinelady, while it's true that anti-hormonal medication has been consistently shown to reduce recurrence between 30 and 40% (depends on the study), that doesn't necessarily mean that everyone should "not give up when side-effects kick in", which I believe is Peetie's point! Someone like me, who has a 12% chance of distant recurrence without Tamoxifen, and has horrible, debilitating side-effects when taking Tamoxifen, is not being reckless or not "sparing my family heartache" by discontinuing the medication. As I am now, enjoying my life and my health without medication, I have an 88% chance of never having to deal with breast cancer again. I'll take those odds.

beach2beach

Each person is unique as well as their situation. I say kudos to all with whatever the decision they make in kicking C's ass to the curb.

Meow13

We should support choices others make. There are no right answers when it comes to treatment.

dtad

Peetie1....I completely agree. I have resorted to PM to discuss my treatment decisions, even in the natural treatment threads. Isn't this why the forum is set up with specific threads? We are all individuals with different circumstances. We need to respect and support others' decisions even if we don't agree with them. Good luck to all.

muska

Agree with all said above. However, we should remember that each day many new users join the site in search of information and read our postings. They need to get a good understanding of what treatments are available and how efficient they are. Out of what is available for hormone positive BC anti-hormonals are the best shot that many have at staying cancer free for a long time, these meds have shown to significantly reduce recurrence in ER+ BC patients. I would hate to see newly diagnosed women to get the impression anti-hormonals do little but spoil your quality of life because this is simply not true.

Obviously, everyone's risk and reaction to anti-hormonals is different and I totally understand when people stop these meds because of difficult side effects and/or when the risk of recurrence is low to begin with. The lower the stage the lower the risk of recurrence usually is, so you are likely to see more resistance to these meds in stage I patients and more acceptance from stage 2+ patients.

Best.

Denise-G

I believe in respecting everyone's opinion. However, I find that often people are misinformed or under informed by their

physicians or even given totally wrong information to base their decisions upon. It always shocks me when I hear this.

But I have personally spoken to countless women where it has been true.

To me, that is why these Boards are SO IMPORTANT.

As for anti-hormonals - that is definitely a personal choice. But I personally know too many women who stopped them,

had a recurrence, and regret doing so. That ALWAYS colors my decision.

wrenn

This thread is proving the OPs point that the site has a bias. :-)

exbrnxgrl

Yes, this site does indeed have a bias toward conventional medicine. However, that bias is not hidden, as evidenced by the disclaimer at the top of the alternative forum:

"This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine."

Yes, I realize that the first sentence says the forum is safe and judgement free, but more telling is the last sentence in bold face. If I were looking for information on alternative tx, bco wouldn't be the place I'd turn to as it clearly focuses on standard, evidence-based medicine Neither good nor bad IMHO, but simply the focus of bco.

marijen

How many is too many

macb04

I know several women who took the tamoxifen, lived with miserable, debilitating symptoms, and still had a reoccurence. I chose a better quality of life. The side effects were too severe for me. As it is, I seem to be stuck with permanent vaginal dryness after only 9 months on tamoxifen. I constantly get UTI's as a result. It's like I have the vagina of an 80 year old, but I am only 52!

I do think we should allow freedom of choice. Someone said it best, there are no wrong answers. Care should always be individualized and tailored for each person. No cookie cutter medicine. That is just sloppy care in this day and age.

dtad

Lets all try to respect any treatment decision made without fear mongering and judgement. These are all hard decisions and are not made easily. We all have completely different circumstances that surround our BC diagnosis. We are here to support each other. Good luck to all navigating this complicated disease...

swg

As someone who is totally fine with getting a unilateral mastectomy to get rid of my 2 tumors on my right breast, but NOT so fine with putting dangerous drugs into my body to HOPEFULLY prevent a reoccurence..and having seen my best friend die of MBC when I was in my 20s, knowing she had a terrible quality of life at the end because of chemo and tons of experimental treatments..

I'm really confused about which way to go after surgery.

My tumors are luminal A. My BS is gonna do the Oncotype test but she already expects my risk of recurrence to be low.

What about risk of metastasis though? When I start thinking about going the alternative route, that gives me pause.

I'm pre-menopausal btw, even though I'm 50.

I wish I had known that early periods, not having kids, and late menopause increases your BC risk

Peregrinelady

I respect that everyone has their own choice to make, but it is frustrating to see people say they won't take antihormonals based on what they have read here. There are thousands of women that are alive and cancer free because of these drugs. No, they are not easy on the body for some people, but at least see how they affect you before making a decision. Everyone here has their own perspective based on their life circumstances. For me, I didn't have chemo or radiation, so besides surgery, taking an AI is my only treatment. Yes, there are valid reasons for some people to not take these drugs, but at least try them before you make a decision.

VL22

Interesting conversation. Lucky me, I have two types of breast cancer. At the start of the journey, before we knew I also had a TN tumor, my MO said I would be on tamoxifen for 5 years. So much is going on with the more serious TN tumor now that talk is in the back burner. However, I've done some research and I must say I am surprised she even mentioned tamoxifen to me - the percentage of benefit is so small, I don't see myself taking it just because it is the standard

Peetie1

Perigrinelady,

Respectfully, how would you feel if you were seeking to find support as you navigate the emotional toll of breast cancer, only to be told (repeatedly, by some on this board) that "you should just try chemo and radiation, many people are alive today because of these treatments." It doesn't matter that treatment decisions were made with your tumor pathology, other medical needs, and personal QOL issues in mind. Some chose to have chemo and radiation, so damn it, you're just not fighting cancer if you don't do it the same way that they do!

Peregrinelady

Peetie, respectfully, I understand that everyone has their own difficult choices to make. My only point is that people should take comments here under consideration but not let these comments guide your treatment. My twin sister passed from MBC so I hate to see anyone not do what they can to prevent it.

exbrnxgrl

A bit of stage IV perspective... Yes, everyone can and does make their own tx choices. However, as someone stated earlier, forum postings can be a skewed. Whether on bco or any site dealing with medical issues, those who are experiencing se's or problems with any aspect of tx are the ones who post the most. I would hope that no one is making tx decisions based on what they read here. We don't have a lot of threads that contain posts from women who are very happy with various aspects of tx. Why? I suspect it's because they are (with some modifications, perhaps) just carrying on with life and spending time on a bc support forum has become less important.

I have only been on AI's, first Arimidex, now Femara. Yes, I have joint pain. I have found various ways to cope with it and and do not have a diminished QOL. I teach first grade and enjoy friends and family (two grandchildren and one on the way!). I travel, knit and have few limitations. More importantly I have been NEAD for a bit over 6 years, at stage IV.

So, although folks with positive outcomes tend to post less they have valid stories to tell too. Can my docs assure me that there will be no se's, permanent or other wise ? Of course not! I doubt there is anything in life that comes with such assurances. So, please do make your own choices, but don't make them solely on the basis of anecdotal evidence. Best of luck with whatever choices are made.

muska

Well said, exbrnxgrl. I am not sure what the point of contention is. Everyone is entitled to get treatment or refuse treatment. Refusing treatment comes with higher risk that might lead to terminal cancer. The higher the stage the higher the risk. As a result, those of us who were diagnosed at higher stages are more motivated to get recommended tx and deal with the side effects. Lower stage might think the risk is low and opt out of certain treatments. Fine, as long as the risk is fully understood and discussed with medical professionals. Age plays a big role too. Someone who is stage I and 45-50 years old has a different risk of both the cancer returning and side effects than a woman in her 70s with a number of other health issues typical for older age. I just hope younger women reading these boards get this.

Best to all.

Peetie1

I think the point of the original post was lost....

I am new to breast cancer and to this site. I have been disappointed as I notice that there seems to be a bias toward people on this site that have/are making a different choice regarding treatments, especially regarding anti-hormonals. Cancer is tough, the treatment decisions are tough, and everybody's situation is different. Is it possible that we could support one another even if we are choosing a different path for treatment?

muska

I hear you, Peetie. Of course we should support one another but that does not automatically translate into supporting treatment/no treatment choices.

Best to all.

bluepearl

Right on Muska. Not every opinion is right, simply because they are opinions. Science is based on evidence and facts. in medicine that is often clinical trials, double blind clinical trials. But we all have the right to reject science and the right to reject "natural" remedies, without rejecting the people. There IS an huge anti-science movement going on and latest research indicates those who go for "natural" treatments do very poorly. No...not paid for by Big Pharma. It is a very bad formula to say truth is all relative. It isn't. What is relative is how much we believe in who is telling us what. That is where critical thinking comes into play and THAT is not bias, it is just separating facts from fictions based on evidence. reasoning and facts. I prefer my information on breast cancer coming from peer reviewed oncology journals not Suzanne Sommers.....but to each their own and if that makes them comfortable, well, go for it. Just don't ask me to respect Suzanne Sommer's books/disinformation...because I don't.

Be well.

wolfie

I have been reading sooo much about tamoxifen and going thru many posts as I am quite torn about this decision. My cancer was originally DCIS until 3.5mm of IDC was found with that during surgery so I moved up to stage 1, grade 2...sigh... Anyways, I had 16 whole breast radiation treatments and 4 boost that ended on February 28th. My next step 'could' be Tamoxifen but my oncologist has told me that if I had only done surgery and nothing more, I would have a 15% local recurrence rate and that would go down to 5% with radiation...so I am at 5% recurrence rate now, If I take Tamoxifen, that gives me a whole 'nother 0.7% benefit so he is really not recommending it for me because of the SE's. He said I can certainly try it but that is up to me. I did not deal with this whole cancer thing very well and still cry alot, although I have moved on and most of the time I am 'okay" and so very thankful that it was caught so early. I just want to be sure that I do everything I can to beat this and be here for my kids so I worry...and worry...and worry! I have a follow-up appointment with a different oncologist tomorrow (my previous one retired) and I will be making my final decision on the Tamoxifen and then I have to make peace with the decision (as I am still leaning towards not taking it...I know, I will probably get blasted for that!). I really do feel that every single case is different and either decision does not guarantee anything as I have read and heard about so many people on either side that have had a recurrence or spread so it is a crapshoot. It seems like making the decision NOT to take the pills and actually admitting it, sets us up for criticism and some very rude and hurtful comments which I find hard to take...this is cancer and that is tough enough on us so lets not add to that. We all want to do whatever we can but when even my oncologist is 'not' recommending the Tamoxifen, I don't think I will be taking it. Reading different experiences with the pills is a good thing but I think I need to step back from being on this site so much...it scares me and I need to constantly remind myself that many, many women that have and have not taken Tamoxifen are not online but are out living their lives...and I am too!!!

Take care everyone!

Egads007

Unless someone says they're treating themselves with a microwave oven and a hand sander, no one has a right to tell another that their choice is wrong or ineffective. Even then only gentle advice would suffice, not opinion.What I do with my money is my business, same goes for my treatment, same goes for all of you

muska

HI Egads, what you do with your money is certainly your business but when you come to a public forum and ask what people think you should do with your money be prepared to hear what people think - whether you like it or not. If you are not ready or don't like to hear opinions different from your own you simply don't open your wallet for others to peak into.

Best to all.

Egads007

Muska - I agree completely.

What I’m referring to is being told how to spend my money when my wallet wasn’t opened in the first place, and I was simply looking for information related to car repair.

Case in point: being told tamoxifen was evil after posting about a camping trip. (Not on BCO

wolfie

I completely agree too...public forums are meant for opinions, I just don’t agree with comments like ‘you are asking for it to come back and you will die from it’ or ‘how can you do that to your family’. Things like that are just completely uncalled for and quite ignorant. Each case is different and needs to be respected as such.

wolfie

And Egads, that is nuts that Tamoxifen being evil and car repair can be talked about in the same breath! Ugh!

Lula73

I'll weigh in... I'm in healthcare and hear all kinds of crazy things that people have heard that will cure whatever disease they have and they want to do that because they've heard there are side effects that could occur with medications and they don't want to risk having SEs. I'm all for a holistic approach, but I'm also for a realistic approach. every thing you put in your body has a potential for a negative side effect.

Example: fruit is good for you, it's healthy. Fruit can also cause stomach cramps and diarrhea. Stomach cramps and diarrhea are not good for your health or quality of life. (Do you see many people avoiding fruit because of that possible side effect?)

Not everyone has all the pieces of the puzzle but may think they have enough based on the few pieces they do have. Example: I had a lady who started a cleanse regimen the same day she started a new medication (this was on a Friday). Monday comes and she's calling to say she needs to stop the medication because she was in the bathroom all weekend having stomach cramps and loose stools and it had to be the medication causing it. She didn't tell us she was even considering a cleanse much less starting one when the med was prescribed. After further discussion she finally says 'well the only things I did different was taking that medicine and starting a cleanse, but the cleanse wouldn't cause those symptoms because it's all natural and can't hurt me, right? And the box didn't have any side effects listed so there can't be any side effects from or they would be listed. So it has to be the medicine.’ I just had to shake my head.

And some people mistake help and support for negativity and completely disregard anything anyone says to the contrary as just being mean and unsupportive. A lady joined a support group forum I’m part of and announced she was starting a medication that you're supposed to increase over the course of several weeks to help prevent severe nausea/vomiting at the maximum dose. Everyone that replied to her post advised nicely that she needed to start lower and work her way up and as she insisted everyone was wrong, the replies advised her to refer to the leaflet from the pharmacy and/or the insert from the manufacturer as it's spelled out quite clearly there. She abruptly left the group because 'no one was supporting her.' This afternoon she is back after being violently ill from starting at the maximum dosage for 2 days to apologize for her abrupt departure and not so nice words she posted before leaving. She also thanked everyone for their responses the other day because she did read the leaflet and insert in between vomiting sessions and now realizes everyone was (in her words) 'trying to help her and not trying to tell her she was wrong or trying to hold her back from success.' And she had reduced her dose down to the starting dose and the nausea/vomiting were non-existent now.

And there are many, many people out there just. like. the. examples. above.

The bottom line is, you don't know what you don't know:

You have no idea what side effects, if any, anti-hormonal treatment or any natural/alternative/supplement treatment wool/won't have on you - you've never taken them before.

If you do have SEs, you have no way of knowing if they will be severe or mild-you've never taken them before.

You don't know if you'll fall in the majority or minority category of recurrence- you've never taken them before and only time will tell that story (but we do know that if have BC you already fell into a minority category with this disease).

What you do know is that the anti-hormonal medications are shown in randomized, controlled, clinical trials to significantly reduce the risk of recurrence, side effects may or may not occur, but if they do they tend to be tolerable.

Are there some people for whom the side effects are severe and not tolerable, can Significantly impact quality of life, and warrant either trying a different one or discontinuing altogether trading the risk reduction for better quality of life? Yes

. Is there anything wrong with the decision to stop? No.

Is there anyway to predict any of this in advance? Unfortunately, No.

It's one thing to make an informed decision that may be the deciding factor between recurrence & not and even life/death with all the information and pieces of the puzzle. It's pure recklessness to make an uninformed/partially informed decision because you heard/read a medication/natural/alternative treatment MAY cause some nausea/weight gain/joint pain/etc, but you'll never know for yourself because you didn't ever try it. And we, participating members of BCO who do have the knowledge, have a responsibility to share that knowledge, especially with those who are asking for advice.

Unless the reply is worded in a mean, accusatory or degrading way, perhaps we need to take a step back and view all replies on the boards as a means of support and education even if the reply does not match 100% with what the poster and/or other members who replied want to hear because they need to hear it to make an informed decision

Egads007

Lula - very well put! Your thoughts are spot on. An informed decision is the best decision. The decision to take tamoxifen was made by my MO and I followed her instructions as she is the oncologist, not google, BCO or some stranger on the internet. I had done some research before and concurred with her prescription after she answered my concerns. If my way isn’t another’s way I’m fine with it. The only time it gets annoying is when someone who isn’t an oncologist tells me my doctor is wrong and I might as well be drinking Draino. Ive garnered a ton of great info, tips and a suggestions from the good folks here at BCO regarding SEs extra, but I do I run it by my onc beforehand.

Wolfe, I had a personal trainer once suggest I stop taking it to lose weight easier. While I was shocked (as he knew what it was for) I wasn’t angry, as he didn’t imply I was nuts or wrong for taking it. As you said, there is a way of discussing things without being insultingly rude. I might think what I’m reading doesn’t make sense to me but who am I to scare the bejesus out of someone or be rude because we took different paths. Each case is different as you said