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My choice--refusing treatment

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  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
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    I know we all face personal and hard decisions about treatment and how far to go and when to stop or begin again. Wish there was an easy path to the knowledge of what to do but it is spread all over the place and we have to collect and make our own book, so to speak.

    I am equally glad we have a place in alternative where we can talk out the issues of not choosing treatment or only minor treatment.

    My treatment options were snatched away (see Steam Room for that story). I didn't want that anyway but felt the loss just the same because I know my life is at risk - though it is either way I go. Still deciding what to do but I know I am going the lighter road.

  • meow13
    meow13 Member Posts: 1,363
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    dtad, I second better treatment and a cure. Seems like you need a crystal ball to figure out what treatment yields the best results per individual. Even though I felt anastrozole and exemestane benefitted me I am not sure I would do it again. I do know I would have surgery to remove cancer but medications hmmmm, need better meds.

  • dtad
    dtad Member Posts: 771
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    Meow13...exactly!

  • farmladync
    farmladync Member Posts: 8
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    I was diagnosed with triple negative in March of 2015. My tumor was in my right breast. I did have surgery and 8 lymph nodes removed. Chose not to do any treatments. In hind site I would not have had surgery. My arm has never been the same since my lymph nodes were removed. No cancer was found in my lymph nodes and I so regret letting the surgeon remove them. Wasn't told of the consequences . Been going to therapy and it helps but I still live with pain and numbness of my arm. Other than that I feel good. No regrets of not having chemo or radiation . I didn't want any harmful drugs with all the side effects .

  • edwards750
    edwards750 Member Posts: 1,568
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    farmlady - why did they remove so many nodes? I had a micromet in my SN but my ONC said it wasn’t enough to check other nodes.

    I was Stage 1b, Grade 1 IDC. I had a lumpectomy and 33 radiation treatments. What surgery did you have? What was your BC? My Oncotype score was 11

    Sorry about your pain. Several ladies with my church group have lymphodema. Brutally painful. Do you have lymphodema?

    Diane


  • twinbabes
    twinbabes Member Posts: 19
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    hi farmlady, I didnt like the sound of having all the drugs either, I havent even had surgery , rads, ect. I'm co-existing with my cancer and 9 years (fingers crossed) down the track I'm still ticking along. I think it was remiss of them not to inform you of the possible consequenses when they remove nodes, I hope you find some relief for your arm. Unfortunately I have no suggestions to help but hope someone else can give some ideas

  • meow13
    meow13 Member Posts: 1,363
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    Swimming gives me temporary relief from my under arm tightness. I was never told what removing nodes could do.

  • April-May
    April-May Member Posts: 1
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    I too have triple negative IDC. I was too worried to not do chemo. I am half way through treatment right now. I would have loved to have avoided chemo but my oncologist scared me into doing it. Can I ask what you do alternatively, if anything?

    Any advice would be very much appreciated.

    Thank you

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
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    April-May - go ahead and read as many pages as you can in the alternative and in the complementary forums. You will find many protocols. No one can really morally advise you on what to do instead. It is a long journey finding our own way. I am lost still after all these years. And when we think we aren't lost we may find out much later that we were.

    We are here to support you, listen, help you field your way through.

    Diane

  • farmladync
    farmladync Member Posts: 8
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    edwards750 . I don't know why my general surgeon removed so many lymph nodes. He did a needle biopsy in his office before my surgery. I have triple negative breast cancer . I have since found a breast cancer doctor and surgeon . My tumor was 3 centimeters . My advise is go online and do all the research and talk to women who have been through it. Don't just take a doctors word for anything !

  • Beaches4me
    Beaches4me Member Posts: 1
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    I have prior history of bone marrow transplant for Leukemia and now diagnosed with breast cancer. Just can't find much information to help guide me decision about treatment. Any ideas?

  • cindyny
    cindyny Member Posts: 1,231
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    Beaches4me- what is your dx...the first estimate of size, grade, and type of bc will help guide you to treatments, or choosing to forgo treatments, as these posts suggest. Best wishes to you.

  • GGv2
    GGv2 Member Posts: 3
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    Been a long time, but I'm back here again, looking for this exact topic. At the insistence of a friend who was bearing the burden of knowledge alone, I did reach out briefly to some of the wonderful people who helped me through the first time. I probably shouldn't have been surprised at the response, but I was. So, I withdrew. As if knowing the beast is back isn't enough? Seriously?

    I have struggled since childhood, fighting constantly, and literally more than once, for my very life. While I do have a child, that child is nearly grown. I care for a parent with Alzheimer's, but have a brother who can (and should. It's about time.) carry on if/when I can no longer do so. There is no one else. There is also no money. I cannot stop working, even for a day, or there will be no roof either. I'm tired. I'm done.

    "Have testing" they say. "We'll get together and pay for it," they say. Such amazing friends I have, and I'm lucky. But, they've apparently forgotten how this goes. Mammogram leads to sonogram, leads to CT scan, leads to biopsy. You can't just pay for one test and be done. "Just have the surgery," they say, then call it quits. Same issue. Who is going to pay for that and who is going to keep the house going while I'm off? No one. It's up to me. It's always been up to me. It always will be. There is no end. There is no retiring. There is no happily ever after.

    Did I mention I'm tired?

    It would be nice to make it to said kid's graduation, but when this nightmare began, the goal was to make it 10 years - just long enough to see MiniMe on the right path and headed toward a beautiful life. I got what I asked for. Why would I spit in the face of that?

    Is it THAT wrong to do something for me, just this once? To say "enough" and mean it? Without being guilted, cajoled, harangued and made to feel I'm inflicting horror on everyone else just for the fun of it? Just once, can it be about me and what I want? Without having more people I didn't ask for brought in to tell me how their lives were ruined because Mom died? Without being accused of losing my mental faculties too early?

    Am I depressed? Of course I am! I didn't want this. This isn't the life I had planned at all. No one faces the end with a smile plastered across their faces and no regrets. On the other hand, a bottle of anti-depressants isn't going to change things.

    Isn't there some way to face this with pragmatism? I'm going to die anyway, for heaven's sake! Can't I do it my way?

  • Variable
    Variable Member Posts: 28
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    GGv2,

    Wow! I am looking at your diagnoses and treatments and it looks like your efforts the first time were as recommended. You have every right to want it your way this time, even if it isn't the popular choice. As you say, it is your life. You have already played by the rules and done what you should have only to be exactly where you are right now. I hear that you are responsible and feel obligated, but your family will figure it all out when they have to as you go down the road you choose to go down. I am sorry you are dealing with this again and so frustrated! Do what is best for you; the rest will be what it is, and as is was meant to be all along. This destiny was not your choice, but how you get though it is!!! Best wishes to you and your family.

  • bluepearl
    bluepearl Member Posts: 133
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    GGv2: That anyone has to go through this is bad enough...but to be financially forced into not having the proper treatment outrages me. I live in Canada and our universal coverage is just that. I walked in and out twice and never had to worry about paying for it...not even the tamoxifen. That said, I am not so sure you are comfortable with that decision because, yes, many times people face their own mortality once established, with peace in their hearts. My friend's grandmother was tired and had enough and arranged to be "put down" comfortably. That should be everyone's choice. Your choice is complicated by things that are not your choice...the financial aspects especially. While we are all terminal no matter who we are, we all deserve (and often don't get) a good death. There are some roads you can explore...ie....certain drugs like DMT and others have made people who are terminally ill quite at peace after they have taken them (about a 15 minute "trip")...you can see this from Scientific American article among many...and NO depression or anxiety. One can also practice mindful meditation which has significant benefits for everyone, especially those with trauma etc...am reading a book called "Full Catastrophic Living" which addresses this...perhaps get from library? Music...always music. And last but not least, have a plan at hand. Hospice for example...everything set up...it might make you feel better doing that. Wishing you peace in your heart no matter what your choice is and I am very sorry you do not have a soft place to fall at this time........perhaps a support group? ((((HUGS))))

  • GGv2
    GGv2 Member Posts: 3
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    THANK YOU!!!

    It's amazing to hear words that aren't accusing and laced with guilt inducing rhetoric that doesn't change the hardcore reality of this.

    You're right. I'm not at peace about it. Not completely. Not yet. It's still pretty raw and new. The circumstances that got me here are not pleasant either, so there is a certain amount of bitterness.
    The first round of this mess cost me my marriage, which cost me my "Cadillac" Insurance.

    With a six figure income, the whole thing cost about $500 that time. Now, with considerably less than 1/4 of that income, I have ACA, which will have me out on the streets before I even make the deductible, let alone deal with the time off. It took two years to rebuild my career last time. I've never been able to bring it back to where it was before. I've also been unable to secure a decent job in that time. Too many holes in the resume from being self employed so long. And, honestly, the chemo brain left me struggling to keep up with my skills. So, even before this, things were scary and dire. It's just, kind of the final straw, ya know?

    Even if I had the means though, what am I really doing? We all know what happens when the beast comes back. How much time would I really be buying? And at what cost? Do I leave my already pitiful estate in massive debt, in addition the pain of losing me? Do I spend the end sick and struggling, and likely homeless? Or do I just accept and enjoy what's left, which I have to do anyway? Seems like a no-brainer to me.

    In time, I will be in a better place with it. And, as usual, this place, and the folks here are a literal lifeline in the dark.

    THANK YOU, again.

  • kcmc
    kcmc Member Posts: 66
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    You are allowed to feel the way you do, your choices are yours, your feelings are valid. If I didn't have small children I probably would have made some different choices. I just hate to think that this is financially driven. How I hate our healthcare system!

    I envy my friends mother when diagnosed with stage 4 lung cancer decided no treatment and spent time at home in hospice with quality time that she got to spend with her kids.

    We should all be able to make our own decisions without being judged. This disease is hard enough, our choices shouldn't be taken away even if family, friends or the public at large does not agree with them.

    Blue pearl has some great advice. Sending you virtual hugs (( ))

  • swg
    swg Member Posts: 59
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    Please feel free to PM me. My dad had Alzheimers..I know what you're going through.

    So sorry you keep having to deal with this beast. F** cancer :(

  • swg
    swg Member Posts: 59
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    I totally agree.

    Long before I was diagnosed with my own cancer, a best friend of mine died of it.

    She struggled eight long years, fighting it with every ounce of her being, because she had a young son she wanted to stay alive for. Tragically, he was only 8 when she died.

    I don't know if she had a very good quality of life that whole time..it seemed to me, she was spending so much time enduring horrible experimental treatments at UCLA. One almost killed her.

    She never complained though. Even when I wanted her to talk about what she was going through..she refused.

    I watched her die. It was terrible but I was also so honored to have been there for her.

    After that, I KNOW for sure, if I get a recurrence of this horribleness, I REFUSE to spend all my time shlepping from treatment to treatment.

    I'm way more concerned about quality of life than quantity.

    Yes, we all die one day, anyway. I prefer to do it my way, too.

    I had my implant exchange surgery yesterday, and I am done. Thankfully I didn't have any spread to my lymph nodes. No one is trying to force Tamoxifen down my throat, either.

    Instead, I've changed my diet. No more processed foods. At least 5 fruits and veggies a day, and I work out regularly at the gym.

    I feel better than ever.

    That's more important to me than hoping some big pharma-pushed drug will extend my life.

  • dtad
    dtad Member Posts: 771
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    swg...we all have the right to make our own informed decisions. Good luck and keep us posted.

  • bluepearl
    bluepearl Member Posts: 133
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    GGv2: how has your cancer come back, btw? Since I somewhat believe in eternal consciousness, I am becoming more at peace with death than ever before.....you will know why after reading Pim Von Lommel's book. I also enjoyed Dr. Ian Stevenson's research which has been highly regarded by other sciences for his rigorous research. Pim Von Lommel was published in The Lancet, a very good science journal. No one needs to take treatments for treatment sake either. QOL matters. What really upsets me is you aren't having it now and you deserve to have good years ahead of you, as many as you can have. In Canada, you would qualify for disability and receive all your treatments and meds free as well as palliative and hospice care. I hate poverty and what happens because of it. Anyways, like you have said, it is what it is. Again wishing you the peace that you need and SOON! ((((HUGS))))

  • jaybird627
    jaybird627 Member Posts: 1,227
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    Hi GGv2,

    Is this your 2nd primary? Mets? Or what, may I ask? I'm on my 2nd primary and want to live as I have a 11 year old daughter.

    My tx just about did me in 13 years ago, This time a similar protocol. I'm going to do some, but not all, of it as I need QOL

    and to get back to work. I can't stay off for months and months to only have a slim chance of no recurrence and no guarantee.

    I'm not giving up, not giving in, simply not giving my life to what I see as unproven cancer treatments. If it were proven as a cure

    wouldn't we all be cured and with no new primaries, no mets, and all live longs lives after treatments?


    Peace and love and success to all...

  • GGv2
    GGv2 Member Posts: 3
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    Hey Y'all! Thank you again, for being here, for getting it, for the whole non-judgement thing... it means more than you could ever guess. Even though some of you are here too, and probably get it more than most.

    I have a friend, who I dumped all of this on, tho I didn't feel it was fair to make her bear all of it alone. She lost her husband to lung cancer, even as a non-smoker, and, as a nurse, saw more than most. So, at her request, I took it to the support group, here, that got us all through the first time. I was astonished, but not, at the vehemence and resistance that I found. We all have kids, about the same age even, except for one who has grand kids this age. I get it. I do. I did it the first time because I had a small child. I asked for 10 years at that point, knowing my kid, knowing my circumstances, knowing that would be enough to set the kid on the right path and that nothing would deter that path once set. Knowing I had time to make it so. I did. The kid did. It's okay.

    So, I'm mostly here to relieve my friend. She shouldn't have to carry this "secret" alone, and I'm going to need more than she can give as I learn to accept and come to terms with what's happening. In many ways, because of my history and the way my life just "is", it's a culmination. I think I mentioned I'm tired. *smiles* This thing wrecked my life the first time around and I never recovered. In the 10 intervening years, things have become worse, not better.

    It would be easy to say that I am depressed and suicidal. It would still be wrong. Those things are true, to an extent, but not for the reasons that most would think.I don't really know how to explain it except for saying I asked (god? Tho I'm not really religious) for 10 years. I got them. Now my job is done and I can rest.

    To answer the questions asked of me, no, I don't know that if it's a second primary or a recur, or even if it has spread. I don't want to know. As I mentioned before, I've never had a mammo that didn't lead to ultrasound that didn't lead to biopsy, so offering me a $50 discounted mammo doesn't really solve the problem. It just leads to more testing, more expense, more time off, more that I don't have to give. For what? The outcome remains.

    Jaybird, I really get what you're saying, along with SWG and BluePearl. My child isn't much older than yours, Jaybird, but, again, she isn't 3 anymore, and her path is set. She's exceptional in every way. Not just saying that as a proud mom, it's true. Her sights are set on Stanford and she's set on law with a bend toward juvenile justice because of a lot of the things we've been through together. Her "idol" is Ruth Bader Ginsberg, and I don't think that's out of her reach in the least. Her teachers and mentors agree.

    So, I'll hold it together as long as I'm able. I'm not sick now. I didn't feel "sick" the first time either, when I was told the tumor had probably been there five or six years and definitely interfered with breastfeeding. Five or six years? Seriously? That's much more time than I need! Tho, I will take every day and be grateful for it, even if it's far less than that.

    The lump in the same breast (I have always second guessed my lumpectomy decision. I should have had mast and I let myself be talked out of it because I had a husband who as a "boob man" at the time.) feels exactly the same as the old one, tho a little smaller. It isn't growing quickly, as I've monitored myself over the last year or so. The first one changed much faster. It IS changing tho, so there is very little doubt. There are other things that I can't be sure about. Maybe I need new glasses (which are also unaffordable, I wear trifocals since my first round) or maybe we've got mets to the brain here. I've got some heavy duty bone pain going on. Might be the EDS, might be bone mets.

    Does it really matter what it is? It can't be fixed either way. So the best bet is to learn to live with it, accept it, and make the most of what is, not what might be.


  • Egads007
    Egads007 Member Posts: 474
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    Although I’d do the opposite, I’m not in your shoes and have no right to judge anything you decide. Nor do I have the right to tell you to get up, dust off and fight, no matter how much I wish you would. I’d have to walk a mile or two in your shoes to even be allowed an opinion. My friend, you’re not tired, you’re wrung out....with very good reason.

    I do wonder though, if by you posting, that there might be some minuscule & faint glimmer of a want or need for change? There are so many here that are willing to be there for you if you decide that’s so. If you’re positively firm in your convictions, we’re still here for you. I wish you nothing but peace

  • 1redgirl
    1redgirl Member Posts: 94
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    New here. I had a best friend die of breast cancer. She did everything to live to see her grand baby. She made it and died. Her last year was a series of unbearable pain from all the drugs. Her choice. I never said a word. I currently have a good friend fighting advanced breast cancer. She too has done everything. Both brave women. Never a complaint. Another neighbor did everything to fight her cancer only to die within a year or so. All did the conventional route. Clearly I was influenced. I have refused the conventional system. This is my second cancer. I went 20 years free of cancer. I refused any treatment the first time. I am 65 this time and have had a full life.

  • edwards750
    edwards750 Member Posts: 1,568
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    It’s such a tough decision. If mine comes back I will have second thoughts about going the conventional route again. I too had a lumpectomy and 33 radiation treatments plus Tamoxifen. While I didn’t sail through the treatments I didn’t have the horrific burning some women have experienced and Tamoxifen caused joint pain but nothing I couldn’t handle. I know there were women who had severe side effects from the drug. Had I had those problems I might have discontinued use.

    While there are no guarantees - I am 6 1/2 years out so I have managed to make one milestone.

    QOL is paramount. After all what’s the point in suffering to add a few months to your predicted expiration date and those months in pain. Makes no sense.

    It’s our bodies and our lives. No one should decide what’s best for us except us. No one.

    Diane

  • 53nancy
    53nancy Member Posts: 295
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    1redgirl, wishing you the best in your choices. I did radiation but not chemo. If and when there is a recurrence, I doubt I would agree to chemo. There is a belief that people who do not fight their illness will live longer and have more peace than those who fight with anger. I do believe this as I have seen friends in both those situations and how it affected them. Both are gone now, but the one who accepted her condition lived two years longer. I will be 65 this year, and I accept that my time may be short.

    Diane, I am glad to know you are 6 1/2 years out. I hope you have many years yet. I am having my Cest/Abdomen/Pelvic CT scan and Brain CT scan this coming Friday; just hoping they will be clear and that it was something else that affected the tumour markers.

  • edwards750
    edwards750 Member Posts: 1,568
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    Nancy - Thanks. I hope all your scans are okay. My sister had to have scans regularly. God my nerves would be even more shot than they already are

    I was wondering why you have tumor markers when your BC is early stage. My MO never tested me with those because she said too many false positives and my BC stage didn’t warrant them.

    I know all MOs don’t follow the same protocol but I always though they were reserved for women with aggressive tumors.

    In any event good luck and keep us posted.

    Diane

  • 53nancy
    53nancy Member Posts: 295
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    Diane, it could be because of the TNBC; but the three month period before these blood tests was really stressful; five funerals plus three we weren’t able to go to, and also something I picked up the day we came home from Mexico. Thought it was food poisoning but don’t know if that would affect tumour markers, and took me two weeks to recover. I am just hoping this is part of her follow-up care. I feel good and am active but this threw me for a loop. I should have answers in about two weeks. I am also switching to the Mediterranean diet, after doing my research.

  • edwards750
    edwards750 Member Posts: 1,568
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    Hope you feel better Nancy. My parents went to Mexico and came back with Montezuma’s revenge. My stepson had it on the plane coming home. Brutal.

    Diane