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I thought survival rates were better. Negative thinking.

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  • blah333
    blah333 Member Posts: 68
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    Runor - thank you for your story...I appreciate adding these ideas into the conversation.

    BUT - I was already strong before breast cancer. I really didn't need any more strength.. personally I think it is an overrated quality in American culture. I would much rather be weak with a good life than strong with a shitty one or to have extra adversity to become even stronger. Stronger for what? to endure even more bullshit? Wow, we are great at enduring physical strain, surgery, degradation... I don't feel stronger from this really, instead I know how powerless I am. Another round won't make me stronger, it might quite possibly wear me out. At some point, after enough years of struggle (I have made less than $13k for the past 10 years, even less in the past two years) you just can't take any more. I don't have any pride or self satisfaction in being strong or having "balls." To me your buddy's choice seems quite rational (vs. pussy). If I fell off a cliff I wouldn't go around hanging on the edge of cliffs. Just like having breast cancer, I'm not going to keep breast tissue in my body after that (of course some is left behind but you get the idea). Your buddy sold his sled, I cut off both my breasts. We do what we can to avoid repeat trauma...

    However I agree, obviously we cannot bail out of it and it does yield a new POV or cast on life, unfortunately for me that is a darker one. I already leaned in that direction "dark" prior to this as well. I didn't really need any more... I used to think that we encounter problems that teach us various lessons, lessons we "need" but now I know that's not true. It's all random, things happen for "no reason" all the time. It annoys me - why couldn't this be more properly doled out to someone who does need more inner strength, and to face the facts of life?

    Instead I realize my whole life could just be ripped apart into shreds or ended by some outside force that has nothing to do with my individual choices, and doesn't care if I've realized my potential or have done what I was put on this earth to do. Nature/cancer doesn't care how "special" I am. It could have chosen a more boring, shittier, uglier, stupider person instead, or a woman with much worse looking breasts than mine were, but it didn't. I did not grow up with a religion but I used to feel some abstract layer of protection or care or regard. Now I know it is not there... it really is like a loss of innocence of some kind. I am surprised that was still possible at 35+. Yet am I better off for it? Right now I don't think so. I wish I could go back to being oblivious about these things. I really cannot find anything fruitful in this except for philosophical questions or ponderings like these, or to try to extract whatever insight can be realized only through an experience like this. However I can't fathom anything that will have made it "worth it" worth going through. It's just a possible consolation prize crumb I'm trying to find on the floor.

  • trinigirl50
    trinigirl50 Member Posts: 158
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    Yep. Life is NOT fair. Never has been but now you really know it. We are all going to die, some sooner than we want. Death doesn't care who we are, who we might become, what we did or didnt do, who loves us or who doesnt. Life is either a Cosmic Joke or a Cosmic Tragedy. I pick Joke, might as well laugh.

    I, too, wish for my "innocence" back. That is not going to happen BUT eventually one does grow weary of all the pondering.

    I really hope that your scan is clear and that you are 'pouting' for no real reason. I also hope your mom is okay.

  • mountainmia
    mountainmia Member Posts: 857
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    blah, what would you like from us? Were you looking for words of wisdom or encouragement or agreement or advice, or was your original post mostly a rhetorical rant?

  • minustwo
    minustwo Member Posts: 13,077
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    And any of those things are valid. We just want to give what you need if we can.

  • runor
    runor Member Posts: 1,613
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    Blah333, there is a whole philosophical system that says, essentially, that life is bullshit. Although they use the word suffering, Life is suffering. And then you die. Can a billion Buddhists be wrong? (I don't actually know if there are a billion, that's just a guess). Did you get cancer to teach you a lesson? I doubt it. If cancer is a lesson there must be an awful lot of profoundly stupid women floating around out there. No, this is not a teaching event. Although to read posts here you will realize that some make it into a learning event. They mold it into something other than it obviously will be. Simply put it's the make lemonade out of lemons way of seeing life and dealing with the hand you are dealt.

    Am I telling you to make lemonade? Hell no! I am the worst person for that kind of advice.

    I was not trying to say that it's great that you grew balls from having cancer. No. Not where I was going. Was saying that getting up every day when this as the first thing on your mind and in your vision IS having balls. Whether you want them or not, needed them or not, it's just a reaffirmation that you've got them. I think that's good to know.

    2017 wasn't that long ago. This is still raw. Time will take the edge off. But it will never go away. I think you can kiss your happy ideas of a carefree, oblivious existence goodbye. Everyone here has done the same. They continue, they have no choice, some continue well, others it's one hell of a battle, but it's not the same, not for any of us.

    I am married and this separated me from my husband in a way I can't put to words. Like before we were in this together and then a glass wall came down between us and I was in something all alone that he was not part of. I became a member of the Knowing I'm Going To Die Club. He did not. His was knowing he might be left behind alone. We were on opposite sides of the same horrible event and it left each of us, to some degree, drifting away, unable to reach the other for support. Each drowning in the same ocean, unable to save each other.

    I sense anger (duh!) and isolation and terror and desolation in you. I don't know what to say other than I am sorry. These feelings are hell. I hope time dulls them. But it will never remove them.


  • ctmbsikia
    ctmbsikia Member Posts: 752
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    It's just so true that every single person's experience with cancer is different. I do feel horrible for all the young women here. Harsher treatment, however I don't think that truly means your life will be cut shorter than anyone else's? Even being diagnosed at 56 I recently went through some negative angry thoughts until I just realized that hey, you're going to die no matter what you do. It was just my time to embrace my own mortality. I don't know, that helped me move on and stop wasting time and use my time and thoughts more wisely. It also helped me when my husband got a terminal diagnosis in late October. That's what I meant by it can get worse and unfortunately for some, it will. I am not mad or angry anymore. We are not to the pain and suffering part yet, so I do not let my mind go there, AT ALL. I stay right in the moment and I face each moment with as much grace and dignity that I can muster. The pissed off fire in me is now just smoldering and everyday I'm still looking to be more inspired on both my own cancer road, and now my husbands.

    Wishing you some peace of mind and a lump of nothing!

  • runor
    runor Member Posts: 1,613
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    CTMB, good post.

  • AnnC2019
    AnnC2019 Member Posts: 93
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    Runor thank you for sharing your beautiful insights with the group. It takes all the unnamed bottled up stuff inside and makes it tangible

  • Yogatyme
    Yogatyme Member Posts: 1,793
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    runor, reading your post made me think about M. Scott Peck’s, The Road Less Traveled. The first line is ,”Life is difficult.” Indeed it is and I cherish the parts with smooth pavement, but these unpaved, bumpy sections are for the birds!

  • runor
    runor Member Posts: 1,613
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    Yogatyme, I keep few books but one that I have reached for over and over, battered and frayed at the edges, margins scribbled in, is my copy of M. Scott Peck's 'The Road Less Traveled'. Solid, solid wisdom. On the wall in front of me now is a pink sticky note. It says, " Mental health is an ongoing process of dedication to reality at all costs." - M. Scott Peck. Human beings are burdened creatures. We know too damn much for our own good. We see the bullet coming and have to keep living anyway. No small task. Mental health is brutal. Delusion is comfortable, but ultimately, crippled. We each must pick up our burden and walk. There will be no one coming along to take it for us. I know. I've been waiting. So far it's just me, looking like a dummy, all alone, sitting on the side of the road, waiting for help that isn't coming. I can get up and walk until the day I die or I can sit there until the day I die. Only one thing is certain. The die part. Disclaimer: I am very, very bad at taking my own advice, so I claim no moral high ground. Like I said, I'm still sitting on the side of the road hoping some outward force can rescue me from this paralyzing misery. So far, not happening.

  • Yogatyme
    Yogatyme Member Posts: 1,793
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    runor, it sounds like our copies are in the same shape for the same reason. When I feel particularly ungrounded, I go right back to M. Scott Peck. I have recommended his books over the years but won’t lend mine. There are few books that I won’t lend and when I do, I encourage the person to pass it on to someone else, but The Road Less Traveled isn’t in the lending library

  • Arya44
    Arya44 Member Posts: 30
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    blah...I came here this morning for this. Everything you're saying is so real to me. I have had a local recurrence after a double mastectomy and mostly I have been able to keep going with my role in life, do a, b and c and hope for the best, try not to think about worst case scenarios too much. Like you though I sometimes end up on the internet reading stats that scare the heck out of me. I find myself a little more confused and helpless even in the face of other more encouraging stats, because they are just numbers and we will never know which side of them we will be on and have to let go of trying to know where we will land. Accepting how little control we have over the outcome is hard.

    Today I woke up feeling pretty terrified of this coming back sooner than later, wondering if I have another lump, or is that scar tissue? People tell me I'm strong, and I appreciate they think that but also find it presumptuous. How do they know I'm strong? I know the feeling of not being oblivious to death anymore-I enjoyed my whole life feeling so healthy and protected and now have this dark cloud over me and I have to just try not to look up at the sky, and nothing I do can change that. I feel like I'm swimming in a world where everyone I know still has the luxury of that obliviousness, I'm the black sheep in how cancer filters my experience from now on. It's not relatable to my friends, family or the people I encounter every day. I don't always want to talk about it anyway but if I do I feel like I'm dropping a bomb. Ctm I agree that it can get worse, I have seen it get worse. I went through some complicated and difficult issues in my family right at the time of my diagnosis. Thankfully I'm much further away from those problems now and have been able to enjoy peace. Lately I have finished all my treatments and have been able to get my business back in order after 7 months off between covid lockdowns and chemo. It's been empowering and has taken my mind away from the dark rabbit hole I can get myself into. But this little scary bit of flesh makes me feel that sense it could all be taken away, my business, control of my financial situation, the peace I've been able to enjoy, and of course my well-being and my actual life. Blah, It's horrible and shitty and there is not consolation prize or lesson to be learned. I have nothing for you either but to me, each of these real, raw posts of that shittiness are validating.

  • blah333
    blah333 Member Posts: 68
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    Arya44 just seeing this now. Well put. I think I am doing a little better in terms of morbid/death thoughts but having a ruined body is getting to me more and more. And it is offensive how little other people understand about it. I was alone before this and I feel destined to die alone, sooner than later if not because of cancer but because being alone is so bad for your health.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    blah,

    I hope today is a better day for you. I would venture to guess that all of us wish there was more progress toward curing bc. It can seem like a long, slow road toward that progress but from my POV over almost 10 years I have seen progress. For us stage IV folks, Ibrance and Verzenio are just two examples of treatments that did not exist when I was first dx'ed. Breast cancer is an incredibly complex disease with many variations and as much as we wish for a cure now that is simply not our current reality. I do think that the “pinking” of bc has lead people to believe that survival rates are, overall, much higher than they actually are so it is shocking to see that stage IV deaths and progression to stage IV are still way too high

    If other people are not understanding your situation re: bc, I ask you, are you always familiar with and understanding of all the possible diseases/illnesses peoplemight develop? I always try to be understanding but the reality is that I am not familiar with all the up and downs of diseases one can develop. I try to learn as I go along but I can't possibly be familiar every illness. Like most, if someone in my circle of family and friends becomes sick with an unfamiliar malady I will learn as much as I can. To be honest, I do not expect people to immediately understand my bc if they haven't been touched by bc in some way. After all, why should they?

    Blah, all lives can be ripped apart or turned completely upside down in a heartbeat, all lives. That is the nature of human existence. Yes, it's a depressing thought to dwell on but it's our reality from the moment we're born. You mentioned that you have always had a bit of a darker side. If that is not making you unhappy and not interfering with your life then no problem. However, if this interfering with your life and your happiness then I'm sure you know that a good therapist is in order.

    On the issue of a “ruined body", yes, for many of us surgery will change our bodies. Ruined? Well, my body is changed but I have never thought of it as ruined. Again, as part of the human condition illness, disease or injury can change our bodies. I wish this hadn't happened to me but it did and who I am and my self worth are not connected to my breasts. Though changed emotionally by bc, I am still me.

    I had been married for 23 years and divorced for 13 years when I was dx'ed. I do not have a spouse or partner and I am almost 65. I am a long time educator and will be retiring at the end of this school year (yes, I continued to work for 10 years post stage IV dx). I understand that I can progress and die at any time and I struggle with this too but since I cannot control the pace of medical research or my disease I live my life as best as I can and don't dwell on what I can't change or control. I hope you can find peace in your life . Take care.


  • Phoenixrose8
    Phoenixrose8 Member Posts: 68
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    I am in almost the exact situation that you are. I have also struggled with the fact that I am only 38 now and have already experienced so much in such a small amount of time. I had triple positive stage three cancer that spread to my lymph nodes. I had a complete response but then had a benign papilloma in the other breast and I had to go through the same terrible motions of worry, vomiting because I worry, then worry some more.

    I also feel like I haven't accomplished much before my diagnosis. I always thought I would be married with a couple of kids by now but my now husband and I just weren't in a hurry. We weren't ready. Right after I got diagnosed we eloped immediately before my first chemo session.

    It's terrifying to think about recurrence. I do it every day and I cry everyday. I know what you are going through. This last year has been unbelievable. Trauma on top of trauma for all of us. What I find to help me is to just focus on your breathing. I personally hold my breath when I'm very anxious so just being aware of that forces my body to breathe normally and it is enormously helpful. I also focus on my feet. Are they warm, cold, etc. These techniques have been very effective to bring you back to the present.

    I really hope you will feel better! We will all get through this together.

  • mindig66
    mindig66 Member Posts: 41
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    I'm sorry you're struggling, but so important to process. It's hard. This whole thing is hard. I'm sorry.

    In 2003 I was diagnosed at 37 and had 4 kids (including a new born) under age 10. I had a happy amazing life! I still do. I also had 17 fantastic years before a 2nd primary dx (didn't even know that was a thing) and while I'm older and hopefully wiser, cancer is traumatic to say the least and facing mortality (even when not faced with a terminal dx) is a real thing most ppl don't face unless something like this hits! So, I just encourage you to not borrow trouble, not to rehearse a tragedy that may not happen and try not to let your thoughts destroy your peace of mind.

    I read on here someone wrote a good thing to keep in mind- that we're people, not statistics so try to not get too caught up in them!

    Big hugs and I pray you get a big fat negative!!


  • SparkleTBD
    SparkleTBD Member Posts: 10
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    blah. I feel the same way was you. Just diagnosed with DCIS and it scares the bejeebers out of me to see so many jump to stage 4. Especially when my surgical oncologist told me i would have a good path with radiation and tamoxifen and made those dr referrals.

    It seems to me that no one dies from DCIS because they rename it something else when its invasive.

  • moth
    moth Member Posts: 3,293
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    Sparkle, it's not that they rename it, it's that it IS something else. DCIS & IDC have differerent presentation in the tissue & different outcomes. DCIS is stage 0 and overall survival for DCIS is close to 100%. The problem is that the baseline lifetime risk of an invasive breast cancer remains at whatever it was ... 1/8 to 1/11 depending on which region/population/timeslice you look at. That risk doesn't go away just because you've had DCIS..... in fact, it goes up - having had cells go a tiny bit rogue already means you're predisposed a bit higher to any new cancer (including not in the breast).

    I think all we can do is monitor, do screenings, try to minimize risks & exposures to carcinogens, do the one thing which is evidence based to have an impact :: exercise :: and keep on living & enjoying life


  • SparkleTBD
    SparkleTBD Member Posts: 10
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    moth. Interesting. Thanks for your input. :)

    So if i go from DCIS to stage 4 in a few years that stage 4 would be a new cancer that cropped up because i an higher risk (denovo?). Not that the DCIS escaped

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Sparkle, welcome to BCO!

    To add to what moth said, it's true that most invasive cancers do develop from DCIS. But it's not that they are renaming the DCIS, it's that the cells are biologically different. DCIS cells don't have the ability to break through the milk duct walls and therefore do not spread into the body. Invasive cancer cells are different; they can spread. So it is a different disease. And the important thing to understand is that while DCIS cells can evolve and an invasive cancer can develop, if the cells are found and removed while they are still DCIS (as in your case), then those cells are gone and they can't develop any further.

    The concern however is if some DCIS cells are left behind in the breast after surgery. This could result in a recurrence, and a recurrence might not be found until after this biological change has taken place, resulting in a diagnosis of IDC. This is why it is so important to treat DCIS, to ensure that all the DCIS cells are removed or killed off. And that's why you had surgery and why radiation and Tamoxifen have been recommended.

    One last thing. Don't believe everything you read. Has it happened that someone had DCIS and then had a recurrence that had already developed into invasive cancer and become Stage IV? Yes. I've been here for 15 years and I can think of 2 cases. What you are seeing most often when you see "so many jump to stage 4" are people who were never diagnosed with Stage 0 DCIS in the first place. Over 80% of IDC diagnoses include some DCIS, and although medically that diagnosis is IDC, for some reason a lot people think the diagnosis is DCIS. Some people will talk about having had or being considered for chemo - well, then they had invasive cancer and not pure DCIS. Some people will mention positive nodes - well then they had invasive cancer and not pure DCIS. Some people will mention that they had Stage I (or II or III or even IV) DCIS - that diagnosis doesn't exist and in fact they had invasive cancer. The trickiest are those who look up DCIS and see that it is Stage 0 and say that they had Stage 0 DCIS - but they really had a combination of IDC and DCIS. Over the years I've asked a few people who "jumped to stage 4" about their diagnoses and they've actually gone back to look at their pathology reports - only to discover that they had it wrong all along and in fact their diagnosis was invasive cancer and not DCIS.

    As moth said, the overall long-term survival for pure Stage 0 DCIS is close to 100%. Even for those who develop an invasive recurrence after their initial diagnosis, the long-term survival rate is in the range of 97%-98%. The bigger risk is being a woman and still being at risk to develop a new breast cancer, one that might not be as favorable as a diagnosis of DCIS.



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    sparkle,

    In agreement with moth. DCIS is simply that, there is no renaming! IDC is completely different, again, no renaming. I don’t have stats readily available but the percentage of DCIS patients who eventually progress to stage IV is relatively small. It may not seem that way from reading this forum but those who are treated for DCIS and have no further issues (the vast majority) simply stop posting on bco. Remember, those who are active on bco are usually those who are newly dx’ed or currently in treatment. Very few who have been treated successfully hang around.

    Lastly, you are right that no one dies from DCIS! DCIS means cancer cells are confined to the ducts and this is never fatal. When you hear about stage IV, breast cancer that has set up shop in distant organs or bones, that does have the potential to be terminal and it is eventually, in most cases. So, in order to move to the fatal stage, something other than DCIS , such as IDC (invasive) has to happen. The DCIS can break out of the ducts and become invasive or a new bc can develop. This means that all of the stages, I-III, hold the promise of potential cure. For the majority, DCIS will be the beginning and end of their bc story. Please don’t borrow trouble. The odds are greatly in your favor. Does a DCIS cell ever go astray and develop into invasive cancer? Yes but not with the frequency you believe.

    PS: Rather than look at posts on bco to draw conclusions, our stories are anecdotal, do a bit of research into what actual stats say about each stage of bc and likelihood of recurrence. Also you might want to get a good understanding of DCIS to see why no one dies from it, and then understand how different it is from IDC, ILC, etc. and you will see that renaming has nothing to do with it. Interestingly, there is a movement to rebrand DCIS as a pre-cancer so that might be the only renaming you find.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,747
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    I should also add that it’s important to understand that breast cancer is not one uniform disease. With different points of origin, hormone profiles, etc. make treating bc very different depending on your particular type

  • SparkleTBD
    SparkleTBD Member Posts: 10
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    thank you to all for the comforting and informative replies. I really appreciate it. :)

    I think this diagnosis has just thrown me for a loop. It is so confusing.

  • hray1993
    hray1993 Member Posts: 220
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    I can totally relate to how you’re feeling. I got diagnosed with cancer when I was 26... now, right after turning 28, I found out I had an enlarged spleen and I just got a scan done on it. I haven’t got results back yet but the sonographer said everything looks good. Up until she said that I had myself convinced with every part of my being that I had liver Mets and was stage 4 and only had 5 years left to live. Thinking about dying at 33 when my son would only be 14 scared the hell out of me. I totally get how you’re feeling about us now being so aware that our lives could be cut so short by cancer. When I went to my doctor and talked to him I asked if he could suggest a good therapist for me because I don’t want to think about cancer every day. I don’t want to be scared every day that I’m going to die before I’m even 40. And he said something that I’ve never heard before which has really helped me a lot and made me start thinking. He said I can give you a therapist but there’s not a therapist in this world that can help you better than you can. He said be your own therapist. You feel this way and it’s consuming you and you feel like you can’t breathe because cancer still has control over you. You have to take control of it. When you have the control you will feel better and empowered. You are a warrior. YOU BEAT THIS. No one else did that for you. That was you. Be proud of yourself for that. I said how do I take control? How do I not be consumed with fear every day? He said think of it this way. If I have a stack of books in my hands and I carry them around every day, all that weight is on me and I’m going to be exhausted and it’s going to drag me down. But if I give different people I see one of the books then that burden on me gets a little lighter Until eventually I can carry that weight with ease. That's what you need to do. Share your story, give little pieces of that weight to someone else that the information you have could help. A therapist could help you, but until you've been through that exact situation you can't really KNOW how it is. If I went to jail and someone that's never been to jail was trying to tell me what jail was like, I wouldn't listen to them, I'd just say you don't know. But if someone that's been to jail was telling me what jail is like, you better believe I'd be listening to them. Someone needs to hear you. Someone may be in a similar position as you and may need to hear exactly what you have to say and that's how you take some of that burden off of you. Let it empower you. You own it, it doesn't own you anymore. And you might could save someone's life by sharing your story.

    I know this was very long winded but I think essentially that's what we're all trying to do here by sharing bits and pieces of our experience. We're trying to help others and it take a little bit of that burden off of us each time we speak up about it. I don't know if this will help you but hopefully the advice I got helps someone. I know it definitely made me start thinking of this whole thing in a different light.

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Thanks for your thoughtful post, hray.

    Heart

  • hray1993
    hray1993 Member Posts: 220
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    buttons, you’re welcome! I hope it helps someone!

  • hray1993
    hray1993 Member Posts: 220
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    buttons, I’m so sorry to hear about your recent diagnosis. I hope you’re doing well

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Thanks, hray.

    I think regarding the original post and the theme of this thread - yes, survival rates are not as good as we wish they would be. Until there is a real cure, there is no getting around that.

    I was never one to obsess about recurrence, actually. I figured I would just deal with it if/when it happened. And I did. I try to do my best with what I can (i.e. live a generally healthy lifestyle, etc.), but I know that in the end that will not make or break what happens with my cancer. We don't have control over everything in life.

    There is suffering all around in this world, and for all of human history, not just for breast cancer patients. None of us can escape suffering and death. They are part of the human condition. It was jarring for me to realize this, but now it seems very natural to me. I wonder why I didn't see it before. I try to remember that any remaining time and reasonably good health I have is a gift.

    My only advice to others who have not recurred is this: try not to let the fear of recurrence steal the rest of your life. Just live now. Yes, cancer sucks and it might not be what you planned. But the rest of this life is still yours. Cherish it.

  • runor
    runor Member Posts: 1,613
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    Loving all these posts. 

  • elderberry
    elderberry Member Posts: 1,058
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    moth: I once worked with a woman who after being diagnosed with bc was asked if she would like to take part in an "exercise study" to test the benefits of those being active vs those doing very little. That was some time ago but the evidence does seem to indicate that women (and men) do benefit from exercise. I have lost touch with her so I don't know how she is doing now. I wish I didn't despise gyms, even pre-pandemic my joke was that I got exercise running away from gyms. I love Zumba, dancing of any sort, brisk walks. Those count. Hating gyms and being a couch potato don't go together. My husband and friends are always saying "Can't you ever stay still"? I figure if a Fit Bit counted squirming and standing when you could sit I would log in miles. I don't own a Fit Bit. Does it count "squirming"? :-)