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Rejecting hormone therapy

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I had a lumpectomy last month with clean margins, no lymph involvement and an Oncotype of 17. I start radiation next week and it has been suggested by my MO that I start a 5 yr course of Tamoxifen upon completion of my 21 radiation treatments. The Tamoxifen side effects I've read about seem real quality of life destroying, and all in the name of less than a 50% chance of avoiding reoccurrence...

My question is this; Has anyone delayed their hormone therapy or flat out said no to it?

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Comments

  • moth
    moth Member Posts: 3,293
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    I would encourage you to consider this:

    -there are plenty of people who don't have awful side effects but they tend to not post about that. So there's a bias in the reporting.

    -your Oncotype recurrence score is assuming you will take your hormone therapy. If you take that off the table, your risk of recurrence goes up.

    -the recurrence all oncologists are trying to prevent with this medicine is metastatic recurrence. That is not curable. It's fatal. I feel we're sanitizing things by saying 'recurrence risk' (which of course can also be regional - ie in the breast, but that's not the one we're worried about). Hormone therapy is trying to reduce your risk of terminal cancer which will kill you.

    -you can put your stats into Predict - a well validated tool - and see how survival rates over 5/10/15 years play out with and without hormone therapy. https://breast.predict.nhs.uk/tool Think about which group you would hope to be in in 15 yeas.

    -consider also that most premenopausal women are hoping to live longer than 15 years & the risk of recurrence of hormone positive breast cancer continues beyond that 15 years.

    As a stage 4 pt, I'm hugely biased to say anything you can do to reduce risk of metastatic recurrence is worth it because there's no going back if it metastasizes. But everyone has different risk profiles. I am sad and mad that my cancer returned but I know I did everything I could to reduce my risk of that happening. If I hadn't I'd have huge regrets. Others feel differently and as with so much, there's evidence and then there's what you choose to do with it.

    It's a lot to think about. Best wishes


  • beetsbluecheese
    beetsbluecheese Member Posts: 2
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    Thanks for your feedback. I'm just trying to figure out if living a life of hot flashes, mood swings, insomnia, bone loss, weight gain, hair loss, lost libido, nausea, blood clots etc is better than living a life... and playing the odds.

  • kathabus
    kathabus Member Posts: 45
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    I had my ovaries removed and went on an Aromatase Inhibitor as part of my treatment plan. I had so much anxiety over it. I was crying a lot beforehand. I would read all the horror stories.

    You know what? I feel pretty good. Do some people have different stories? Of course. But the patients who do well....we don't tend to talk the most. Many of us do good on the treatments. We really do exist. :) At a minimum, I would give it a try. Moth gave you a lot of great facts to consider. Good luck with your decision!

  • lillyishere
    lillyishere Member Posts: 770
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    beetsbluechees, what happens if you try it and you won't have any side effects? For most of us, it was a difficult decision on starting an anti-hormonal treatment but once you are diagnosed with cancer, the priorities change. Like Moth says, there are women who have no side effects and you may be one of them. Good luck!

  • moth
    moth Member Posts: 3,293
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    for sure, but a) not everyone gets all those symptoms & b) they can be managed. You won't know until you try if you even have them.

    And many of those things are just plain old ageing. They're coming in some form or another because it's part of being a middle aged woman - though for many medical estrogen suppression adds its own extra dose of misery.

    but yeah, ultimately, it is all crap shoot. You can do everything right and still recur. Or you might skip half the treatment and be fine. We have no way of knowing how each individual will respond.

  • edj3
    edj3 Member Posts: 1,579
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    Yep, consider trying it out. I did, because if I didn't try it I wouldn't know how it would be for me. I don't take it but it wasn't b/c I was "living a life of hot flashes, mood swings, insomnia, bone loss, weight gain, hair loss, lost libido, nausea, blood clots" etc. I had a weird issue w/ my heart rate spiking very high within 30 seconds of running. Running is very important to me and the tamoxifen was the only thing that had changed. Well that and I'd had radiation but I couldn't take that back :)

    So do try, and give it a real try. Then you'll know how your body responds.

  • jinx27
    jinx27 Member Posts: 119
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    Hello all, thank you for such a useful thread. Does anyone know is Tamoxifen is solely generic now? My Dr. is allowing me to quit AI+OS and use Tamoxifen.

    Im not able to find name brand( Nolvadex) Tamoxifen at all....

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,746
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    Although this is a personal choice I echo what moth said in her first post to you. Most importantly, you are assuming that you will experience every possible side effect to the max and that is far from the truth! What is true is that folks are far more likely to post when they experience neg se's. So since not many folks post about not having huge problems, I will. Please note I have been on each of the AI's for almost 10 years.

    - minimal hot flashes that are hardly worth mentioning

    - no weight gain at all

    - no hair loss, blood clots, or nausea

    - no sleep problems nor mood swings

    - yes, some bone loss but I am almost 65 and it hasn't lead to osteoporosis

    - libido... still there!

    - I do have joint pain, part may be due to arthritis, but I manage with otc pain relievers

    I should add that I have worked full time, traveled and even climbed the Harbour Bridge in Sydney. It's not changed my life and lifestyle in any meaningful way.

    I am making no recommendation either way but please understand that you have no idea how these meds will effect you so a trial seems like a reasonable option. Take care

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    jiinx… tamoxifen has been generic for a long time

  • kathabus
    kathabus Member Posts: 45
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    I think Jinx was asking if the NON-Generic/Brand Name is available.

    On Goodrx.com it states...."Nolvadex has been discontinued by the manufacturer and is no longer available."

  • bcincolorado
    bcincolorado Member Posts: 4,696
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    I did 5 of generic Tamoxifen and 4 1/2 of letrozole before MO decided I could I stop. I had a 17 ONCO score as well. I was diagnosed under the age of 50. My reasoning was it would help keep it from hitting my "non-cancer side" or any stay cells that might be around after my mx from growing. So far ok. I am 60 now.

  • harley07
    harley07 Member Posts: 272
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    I've been on anastrozole for almost 4 months. I was absolutely against using an AI but had a change of heart and mind figuring if the BC came back and was metastatic, I would regret not trying it. So far it has been manageable. I seem to be having more joint and muscle pain, but can't really tell if that is due to my age (63), weather changes or AI. I try to walk at least 2 miles most daysand stretch for a few minutes and that does seem to offer some relief. As others have said, you can try it and if you can't tolerate any of the options, you can stop.

  • orangeflower
    orangeflower Member Posts: 92
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    I'm on toremifene, a cousin of tamoxifen, and I've been having a hard time with it and wondering if I should quit. The main things are fatigue and depression/irritability. Keep in mind that I have pre-existing severe, chronic depression, so I'm probably more vulnerable to the potential for mood side effects. I started the drug in early March, and after a month, I starting having a really hard time with the side effects. My doctors are working with me on managing these side effects, and it seems like they might even have eased up some. It was rough for about six weeks. My doctors have given me treatments for fatigue and mood issues that do help. I'm feeling more hopeful that once we figure out the best treatment protocol, I can stay on toremifene. Maybe the side effects will subside on their own, too. I was sleeping 10 or 11 hours a night every night and needing naps during the day for about a month, but that mysteriously improved.


    There are other women on the boards who have been on toremifene and had no side effects at all. Everyone is different, and if you have side effects you may have to try different things to overcome them. Declining hormonal therapy can be a fatal mistake, so I think it's worth it to try it and work with any side effects you may have. If you're miserable on hormonal therapy and nothing is helping, you can always stop. There's no shame in that. Some people just can't tolerate these drugs. Most people can, though.

  • Catsnedeker27
    Catsnedeker27 Member Posts: 3
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    I tried Arimidex and I had side effects I did not want to tolerate. The side effects were depression, fatigue and weight loss due to loss of appetite. I felt sick all of the time. Then I was placed on Tamoxifen and only suffered depression and intense bone pain which I was to ignore and encouraged to be thankful the drug was saving my life. After a visit to my primary care doctor who listed all of the side effects of Tamoxifen, including stroke, I decided that if I die, I die but I am not leaving this earthly existence sick and depressed because of medication. This is my choice and my choice alone. I have decided to live out what years I have left active and happy.

  • muska
    muska Member Posts: 224
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    Katsnedeker, you didn’t publish your profile that would include age, stage and other details. In the absence of such information, it’s impossible to assess your risks and how much you would gain from hormonal therapy.

    My case is very different from yours. I am high recurrence risk and as such will stay on hormonal therapy for as long as recommended. My current goal is ten years and maybe more. I am in my 7th year with no significant side effects worth mentioning. I continue living life to thefullest, work full time, recently re-married, etc.

    To the original poster and others concerned about hormonal therapy, you will never know if you have any side effects until you try and most women do just fine on them.

  • dtad
    dtad Member Posts: 771
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    Catsnedeker27...I totally agree that QOL is more important than quantity but IMO it also is affected by age, diagnosis, etc. Its a very personal decision and I would never tell anyone what to do. I refused aromatase inhibitors from the start because of other health issues I was dealing with. It's been 6 years and so far so good.

  • dtad
    dtad Member Posts: 771
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    muska...so happy you are doing well on anti hormone therapy but I don't agree that most women do just fine on them. Read a stat that only 40-50 percent of women complete the recommended time on them due to side effects. IMO that is just not good enough! Would love to see more research into better treatment options!

  • muska
    muska Member Posts: 224
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    @ dtad

    The point is, rejecting anything just based on the list if possible side effects may not be the best course of action for anyone.

    Everyone's risk is different and the rejection threshold of someone who is stage 1, 70 years old and has multiple other co-morbidities will be different from another person of the same age but stage 3 and better overall health situation.

    Usually people diagnosed at higher stages are more open to taking these meds and willing to deal with mild to moderate side effects because the odds are not in their favor and they see no realistic alternative.

    I don't have time to research the therapy completion stats and breakdowns by stage, age etc. Maybe somebody can provide a link or two to recent studies.

    Edited to add:

    My own side effects are limited to dryness (skin, hair, vaginal) that is not extreme and istaken care of by moisturizers. No joint pains (I do moderate exercise 3-4 times a week.) Osteopenia started to increase but was reversed by Prolia. No impact on weight, mood or mental ability. Of course I watch my portions size.

  • moth
    moth Member Posts: 3,293
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    There is research showing a lot of women quit hormonal therapy prematurely.

    my not popular opinion is that for many, they quit because the risks of doing so are not fully understood. Doctors do not spend a lot of time going over the absolute versus relative risk and also risk of what? Many patients do not understand that a metastatic recurrence is fatal and median overal survival is about 2-3 years. I've spoken to women who thought they were cured and if that it did come back it would be in the breast again. And so if they don't have that info, and come off the hormonals and feel better, of course they don't see a point in going back. But inadherence on a population basis has huge consequences in recurrence, survival, medical costs etc.

    QOL v quantity is always loaded. I do think that the way some present it is ableist and discriminatory. If we're not doing x activities or leading certain lifestyles, our lives are somehow not worth living. So I think that this is something to tread carefuly with. Each person draws that line themselves and I think it's important to state it with lots of disclaimers because otherwise it can be hurtful.

    I found this study interesting. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC62026...

    'Moreover, an estimated one-third of women who initiate endocrine hormone therapy (EHT) discontinue the drug before five years, which is the recommended duration of EHT [,,,]."

    & also "Research suggests that anxiety and patient beliefs about EHT, including perceived risks, benefits, and necessity, are tied to adherence and persistence with therapy" & "Poor patient provider interactions at time of diagnosis and/or treatment decision-making—including not assessing the patient's understanding of the need for the prescribed treatment, its purpose and the importance of adherence, failure to discuss potential treatment side effects and how to manage them, low degree of provider support, inadequate patient opportunity to ask questions and make decisions, and low patient self-efficacy in interactions—have been shown to impact persistence with hormone therapy"

    This study is trialling an intervention of a mobile phone app for symptom tracking & check-ins with a patient navigator to address concerns.

    I think that just as we 'rah rah rah! keep going! you can do it' to women who are struggling through biopsies, surgeries, chemo and rads, we need to actively encourage women to continue with endocrine therapy if it has been prescribed. I mean we also support people who opt out of all treatments because that is always everyone's right....

    but lots of times what we need is support & encouragement and if we don't support women, and say this is important, then we're failing each other IMO.



  • muska
    muska Member Posts: 224
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    @ moth

    Excellent points

  • edj3
    edj3 Member Posts: 1,579
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    moth, I always appreciate your posts. You're clearly articulate and smart and write in a very accessible way.

    I would extend your paragraph on QOL and quantity to include the level of risk someone's OK with taking. Not taking tamoxifen is a risk for me, I won't deny it. There are far too many BCO members with mets, and of course there are my friends who've gone before.

    So the gamble, because that's what it is, needs to be clearly thought out and as fully understood as it can be this side of mets. And if you do choose no tamoxifen or AIs, then with that comes the responsibility to say "I chose this, no one made me take this path. The consequences, good and bad, are mine."

    Like you, I don't know that everyone is that clear about what they're doing with that choice.

    I am, I'm very clear about what I'm doing (or rather, not doing). I hope my risk assessment is correct but I made this choice, no one put a gun to my head and said stop taking tamoxifen.

  • redcanoe
    redcanoe Member Posts: 72
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    I am starting tamoxifen soon and have had a few good cries about it. It is scary not knowing what the side effects will be. However, I am acutely aware of the side effects of the alternative and I am more willing to put up with hot flashes and weight gain for 5-10 years rather than chasing therapies for the rest of my life. Endocrine therapy is no small benefit, it's more than chemo. It's actually a privilege to have endocrine therapy available to us, even with the side effects.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    moth, excellent post.

    I think there are two points you made that need to be tied together.

    "Doctors do not spend a lot of time going over the absolute versus relative risk and also risk of what?"

    "we need to actively encourage women to continue with endocrine therapy if it has been prescribed."

    What I have found concerning in my time reading posts on this site is that too often doctors prescribe endocrine therapy and sometimes even quite forcefully promote it ("I won't see you as a patient if you don't take an AI") to patients who face a relatively low risk of mets, and therefore receive only a small risk reduction benefit from Tamox or an AI.

    I'm not suggesting that endocrine therapy not be prescribed to these patients**, but if the risk reduction benefit is only 1%-2%, as would be the case for someone with a favourable pathology and low Oncotype score, the patient should know this. And if a patient is struggling with side effects and questioning whether to continue, the response of a MO, and the responses from all of us here, should be different for someone who is low risk and is getting only a small benefit from endocrine therapy versus someone who is high risk and is getting a significant risk reduction benefit from endocrine therapy. Yet from reading this site, it seems to be rare to see these distinctions made by MOs and it is unusual to see much discussion about risk/benefit in the posts here about whether to try/continue endocrine therapy.

    It's unfortunate that beetsbluecheese deleted her post and seems to have left the board. I suspect she felt that her concerns about endocrine therapy were being discounted, with all the encouragement to "just try it". I happen to think that "just try it" is good advice but I think any decision on endocrine therapy should start with an understanding of the individual's metastatic risk and the absolute risk reduction benefit from endocrine therapy. That provides the context for the discussion about side effects, quality of life, and, to edj3's point, level of risk tolerance.

    ** To my point above, I have one exception. I have seen MOs prescribe endocrine therapy to patients who've had a BMX for DCIS or DCIS-Mi. Not often, but often enough. There are situations where this is a reasonable recommendation, for example if the surgical margins are close/positive or if the patient is BRCA positive and has a much higher than average risk to develop a new primary. But in most cases, after a BMX for DCIS or even DCIS-Mi, the risk of serious side effects from endocrine therapy (not even considering QOL side effects) is greater than any risks faced from the breast cancer diagnosis, whether local recurrence risk, new primary risk or metastatic recurrence risk. This an extreme example but it highlights how some MOs just go by the book (ER+ breast cancer = endocrine therapy recommendation) without consideration to the individual's risk from her diagnosis and an assessment of the amount of benefit a treatment will deliver.

  • harley07
    harley07 Member Posts: 272
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    Moth & Beesie - thank you for your excellent posts. I appreciate the insight Based on my experience I agree there is room for improvement in terms of the need for a MO to counsel patients based on their individual risk factors rather than ‘one size fits all’

    I’m reasonably intelligent but have to admit I’m overwhelmed researching BC on my own. My MO is nice but refused to provide any information on my risk of recurrence even in response to my direct questions. I don’t even know how often and for how long I should continue to see her or the BS. No nurse navigator was assigned to me

    I’ve used the PREDICT calculator which shows no benefit from AI in terms of my survival rates. I was adamantly opposed to taking on AI but thought I would try it so I wouldn’t have regrets in the future. As the muscle and joint pain is increasing I’ve reached out to the MO and she recommends staying on it another 2 months to see if the pain decreases as my body adjusts

    It’s interesting to read about different experiences. I realize we know more about BC today than we did 20-30 years ago but until I was diagnosed with IDC last year at 63, no doctor seemed to care that my mom had BC as well as her sister and aunt. My Genetic testing and counseling revealed a RAD51D mutation which drew completely different reactions from my doctors. Genetic counselor suggested considering BSO, RO demanded I have my ovaries removed immediately after completion of radiation while MO said she only handles BC. I’m Still deciding.

  • VioletKali
    VioletKali Member Posts: 97
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    I have chosen the "road less traveled" in cancer care. I am a Nurse, for reference.

    I QUIT chemo due to QOL, then tried OS +AI for several months, but it was awful. NOPE. QOL sucked. Daily pain. I exercise 1-2 hours a day, just waking up and walking was painful during that time.

    Due to seeing so many women having recurrences after doing everything *RIGHT*, I decided that cancer treatments can be a wildcard. I could do everything imaginable and it can recur. So why not just live my life like I choose, knowing that no matter what I am at risk for recurrence. I am a DNR, and I never want crazy interventions to extend my life.

    QOL is more important for ME than quantity. Also, I am a member of Dignitas International and would make very specific choices should my QOL become awful.

    So far, 7 year survivor living well and knowing the risks.

    Do I WANT to die? No, not at all..I just choose not to live like that.


  • racheldog
    racheldog Member Posts: 209
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    Violetkali, you have my exact diagnosis. The HER2+ part stinks. I am also a healthcare provider and we all think the same after seeing so many (unknowing) patients keep getting medical treatments without really having the informed consent they should have. I had a hard time with the chemo and SE and am doing radiation and possibly a few more Herceptin--unless that becomes problematic. But when it comes to the AI drugs or Tamoxifen I am quite sure I will put on the brakes. Side effects and long term side effect are bad.And, I respect your position on QOL.

    I have had retinal issues with laser treatments for tears and no one has brought up how problematic these hormonal drugs can be on vision and/or cause retinal traction leading to detachments. And I will not put up with joint pain and not being able to take care of myself or my home or animals. I cannot believe all these years that big Pharma has not come up with alternatives. I will want to consult with a Naturopath. There has to be something else.

  • mavericksmom
    mavericksmom Member Posts: 1,116
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    This is weird posting here when original post was deleted, however Ais are a topic that hit me the hardest both times I had breast cancer.

    I wrote on another similar thread a few weeks ago.

    My feelings are two fold.

    First: Oncologists do not know whose cancer will or will not come back. They recommend AIs to all women who are Er+ Pr+ Her-. Why? Because they don't know whose cancer will spread elsewhere or who will find their cancer making a repeat performance. They are doctors and do the best they can to protect their patients. There is a great deal of research showing that Ais save lives.

    Absolute and Relative risk factors are still guesses. While based on scientific evidence, they still are not able to say with certainty who will and who won't benefit from AI.

    I stopped Letrozole after taking for 6 months after ILC in 2019. I NEVER wanted to take it in the first place. I took Tamoxifen for several weeks and stopped in 2003 when I had IDC. I am soooo glad I stopped!!!! I wish I never started! I want to keep all the estrogen I have even if that means facing breast cancer again.

    Secondly, It DOES NOT MATTER what I do or what others here chose to do as far as AIs are concerned. What matters is that the patient understands her diagnosis, her stage and grade of cancer, what prior treatments and tests have been done and then learn all she can about the hormonal therapy that is recommended for her. After doing all that, discussing with her oncologist, SHE must make the decision as to how to move forward!

    Beesie gave me great advice when I was going through the agony of taking or refusing Letrozole. To paraphrase her, she said something like, if you quit and end up with cancer again, will you regret stopping the AI? I know in my heart I will not! I don't even think of getting breast cancer again other than feeling if I get it again, I will deal with it then.

    When I was searching for AI experiences from people here, I was unaware that I was really looking here for someone to tell me what to do. That didn't happen (and it shouldn't have). I needed to make my OWN decision based on my cancer, my oncotype score, my philosophies on life, along with applying what my oncologist told me and research on AI's that I did.

    If you are coming here to get support for either choice, you will find it. If you are coming here to be convinced to take or not take an AI, then you won't find your answer here!

    There are hard choices with cancer, probably the hardest most of us ever have had to make, but we can't make those decisions for others!


  • trishyla
    trishyla Member Posts: 698
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    Very well said, Mavericksmom. I had triple negative breast cancer as well as hormone positive when first diagnosed. I tried anastrozole and femara both, even though the triple negative was the aggressive cancer that doesn't respond to hormone therapy. I figured it was the most likely to metastasize.

    I had to stop AIs due to extreme pain in my joints that made it impossible to function. I could not live that way. Will I regret my decision if the cancer returns? Maybe. But the alternative, with zero quality of life, was not an option for me.

    As my grandmother used to say "I've made my bed, now I'll have to lie in it".




  • moth
    moth Member Posts: 3,293
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    again with the "zero quality of life" for people with extreme joint pain which limits their activities? This is ableist.

    reminds me a friend with stage 4 colorectal cancer to whom someone said "oh I could never have a colostomy. I'd rather die". Nice sentiment to express to someone who's actively trying not to die.

  • trishyla
    trishyla Member Posts: 698
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    Was that directed at me, moth? If so, who made you arbiter of what I use as my criteria when making my decisions about MY life? This is not a stage IV forum. It is open to all members.

    I understand how hard it must for you to know that those of us who are not stage IV have choices regarding our care, and those choices can depend on how a particular treatment affects our quality of life. Speaking of it is not meant to offend you, but to honestly share OUR reasoning behind the choices we make. We have a right to our pursuit of what makes our lives worth living, whether you approve or not.

    Again, not meant to offend, but when you bemoan the fact that many women don't have all the facts regarding their treatment, please don't second guess the choices of those of us who DO have all the facts about our disease, but have chosen a path different than the one you would have taken.

    All the best

    Trish