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Those with minimal metastases (1-4 mets/oligometastases)...

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  • exbrnxgrl
    exbrnxgrl Member Posts: 5,063
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    eelder,


    Here's my take on optimism and bc. Optimism doesn't cure or even control bc, but, and it's a very big but, optimism will give you an amazing tool to use when coping with bc and make your life, regardless of length, much easier and filled with joy. How do I know ? Because I resolved,early on, to live with optimism, even when it seemed impossible. The reward? Well, today I babysat both my 9 week old grandson and my 4 year old granddaughter. Neither of them was born when I was diagnosed and bc can never take that away from me.
    With great hope and optimism,
    Caryn
  • Kandy
    Kandy Member Posts: 424
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    Indenial, I think we all can relate to how you are feeling. We all have our reasons that we need to live. I really do think you should seek out a second opinion so you can get comfortable with your treatment plan. I did have SBRT of my met. It did kill the met but 2 years later it left me with severe bone necrosis. I had a spontaneous acetabulum fracture from it. After not walking for 6 months, in March I went through a major 8 hour pelvis reconstruction. I am now able to walk with a cane. I am telling you this because all choices come with risk and complications. As far as MD Anderson, I hope you get there if that will ease your mind. My husband's cousin was treated there. She had chemo there when she was stage 3. Two years later she progressed to stage 4 bone mets. They did not do chemo again, she was also on hormonals and had radiation to her mets. I still think you are underestimating their power. I do wish you the best and hope as time goes by you become more confident. Prayers for you.

  • eelder
    eelder Member Posts: 152
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    Thank you exbrnxgrl.... Sadly I know optimism can't take this away. I just feel that if I'm sad all the time then cancer wins now. Cancer could win in the end, but for now, I want to be the happy, joyful, positive person I always was before this happened. Otherwise what's the point? I have hope for all of us.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,063
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    "I just feel that if I'm sad all the time then cancer wins now."

    Exactly!

  • pwilmarth
    pwilmarth Member Posts: 138
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    I thought I would mention something I heard from a breast cancer specialist on Living Beyond Breast Cancer. It wasn't that long ago that the doctors saw only a few women with metastatic breast cancer in a week.

    Today, they may see 40 women a day. The reason for that is better treatment with longer survival.

    At 33, you weren't expecting to deal with a chronic disease like metastatic breast cancer. Then you get thrown into a specialty with a lot of jargon and a lot complexity. But there is so much going on in breast cancer research and it's all very hopeful.

    So I understand why you might resist the comparison to diabetes, but before the discovery of insulin, it was always a fatal disease. Now, it's a disease of managing complications. And yet, they continue to push out new treatments to decrease the complications And some of these complications aren't pleasant. It's not pleasant watching someone lose toes and feet due to gangrene. But it happens.

    I would say to you that your feelings are normal. It's a life of highs and lows on a spiritual and emotional level. Continue to look for hope wherever you can find it. It's not particularly fair that you were dealt this hand.

    One of the things that I've been blessed with is to work in a profession where I've seen other people who have been dealt these hands at a young age. Everyone deals with it differently. But the people who seem to do the best develop spiritual tools that lighten the burden. It doesn't take it away. It just gives you a place to go with your fear, anxiety, and doubt. One of my best memories is working with adults under the age of 50 who have MS. Some of them were the happiest people I've ever met. And yet they couldn't perform the simplest functions like bathing or dressing themselves without extensive assistance from their caregivers.

    What made them so happy? Some of them were Bible readers. But most of them had let go of being in control. They get up everyday and look for those things that make life meaningful and pleasurable.

    When I read stories from young women with breast cancer, almost everyone of them talk about their children. It's their children that give their lives meaning, pleasure and hope. It's their children that drives them to continue. And there's nothing wrong with that.

    Back when I was in college, I read a lot of books on psychology. I'm not sure if young people today know who Victor Frankl is. He is most well-known for his book Man's Search For Meaning. He was a WW2 Concentration Camp survivor. It was his experience in concentration camps that influenced his entire career as a psychiatrist.

    Even in what may appear to be dismal and hopeless situations, people find meaning and purpose in their lives. It doesn't mean that you skate through everyday without moments of spiritual distress. But it does mean that you can find meaning and purpose, even joy, in difficult circumstances. You can learn to fight the spiritual demons that are pulling you into despair.

    I don't know if you are someone who prays, but there are many useful prayers that help fight this spiritual battle. I thought I would share this from Gilda Radner who died of ovarian cancer many years ago.

    I wanted a perfect ending, so I sat down to write the book with the ending in place before there even was an ending. Now I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Like my life, this book has ambiguity. Like my life, this book is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Gilda Radner, It's Always Something


  • eelder
    eelder Member Posts: 152
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    pwilmarth.... My heart is full with thanks to you for writing this. I have tears in my eyes because you beautifully said just how I feel. It isn't fair that any of us are facing this, but I do believe in choosing hope and living in a way where happiness is my choice. A woman who was like a second mother to me passed away from diabetes last summer at the age of 72. She had more surgeries than you can count, more health complications than I care to go into, and yet she was BY FAR the happiest, funniest, most "full of life" individual I will ever know. She struggled so much.... she was told 25 years ago by UCSF to get her affairs in order - that her diabetes was taking over and she wouldn't make it. But she did! She tried every medication they could offer her and she never, ever gave up. Her body tried to give up on her, but her spirit never did. She hit all those milestones a mother wants to see, including seeing my best friend (her daughter) get married 10 months before she passed. I believed then and still do that she held on until her last "bucket list" item was checked off.

    I am well aware that I cannot "will" this away. I believe finding a purpose during difficult times is key. I believe that choosing happiness (whenever possible) is key. I believe in the human spirit and its power to persevere. I also believe in our doctors and researchers.... every year they know more and more about how BC works and how to treat it. I'd love to be cured, but I don't need that. I want life. And I will manage whatever I need to to keep it.

  • indenial
    indenial Member Posts: 125
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    I am almost at a loss for words, but I want to acknowledge what you all have said and how much strength it gives me to read it. I let out all my fears and sadness here among you who understand... but I am not ever letting cancer win by living a sad life! It's amazing to me how just 2 months ago, I thought a stage 4 diagnosis would be the end of my life -- not necessarily physically, but spiritually. I thought I'd collapse under the weight of it and struggle to go on living. I thought it was the worst possible thing that could happen to me. Of course I am not happy about the diagnosis and its meaning for my life... but I know I have gone through far worse things already, and survived. This is not the only life-threatening situation I've been in. Most of my life has been a struggle and I've survived more in 33 years than most people face in a lifetime. I don't know if my body will survive cancer, but I do know my spirit will. Every day I get up and find joy and happiness. Most days I do think about cancer, but usually in the same way I think, "Oh, I need to remember to throw in a load of laundry." Some days it weighs on me more, of course. My son does give me so much to live for and brings so much meaning to my life. I hoped for more (more time, more kids, more carefree days) but I already have more in my son alone than some people can ever hope for. When I'm doing things with him lately, I've been thinking how lucky I am to be able to enjoy that peaceful time with him, how some people never know their kids, how some people live in war zones or extreme poverty or other unthinkable, unbearable situations, and how blessed I am to have so many wonderful, beautiful, meaningful moments with such an incredible human being.

  • artistatheart
    artistatheart Member Posts: 1,437
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    indenial, you are going through exactly the same thing we all too. Fear, anxiety, hope, peace, confusion. The research world is a jungle and it is so difficult to be told to live your life when you just want to SAVE it and think if you just do enough reasearch, find the answers, things will feel normal again. Things do level out, at least they have for me. That does not mean I don't have some very BAD days. But all in all I am with eelder. We need to believe and keep hope alive. I have way too many things to do still! Sorry you saw your sternum light up Z. I think your choice was very sound and hope Ibrance kicks that possible met to the curb.

  • eelder
    eelder Member Posts: 152
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    indenial.... beautiful post. We are with you. I am with you all. When I talk to my many friends who work at Genentech they ALL tell me to have lots of hope. Genentech alone is working hard on some amazing things.... we just need a few years! Stanford and UCSF have trials as do many other top institutions. We are figuring out more and more. We have options and tools and the amount of money that gets poured into BC research is pretty amazing. Imagine your current situation 10 years ago.... even 5 years ago. So many developments since then! And so many more to come. Our journey will be rocky.... full of ups and downs. But we can do this!!!! Sending love to all.

  • indenial
    indenial Member Posts: 125
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    So the RO doesn't want to radiate the rib because she thinks the femara will make it go away and doesn't want to scar my lung. Which I guess makes sense, but I'm still struggling to wrap my head around the "no aggressive treatment" thing and what it means for survival. She said the studies on SBRT are too recent without enough long-term follow up and that the patients were probably having radiation for pain not to get rid of the cancer. She explained it all well but I'm confused anyway. She also said we need to repeat the MRI because even though 3 scans showed it is clear, the PET scan didn't and she would want to radiate my neck if it looked cancerous. Sigh.

  • pwilmarth
    pwilmarth Member Posts: 138
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    Our world of ambiguity continues

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,063
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    indenial,

    It is hard to digest that so much of our tx choices are not clear cut. They are based on studies that may be limited, the opinions of ones mo and the simple fact that bc is a multifaceted disease where each of us needs to be treated differently.

    I can understand not wanting to compromise your lungs with radiation. My rads were to my femur, so no vital organs were in danger. In general, rads have been used more for pain control than for eradication, but I think the tide is turning and we will start seeing it more for eradication.

    The "no aggressive" treatment thing can be hard to swallow as it makes some feel passive in their own destiny, but for some it provides great survival time and great QOL during that time. I have no qualms with my less aggressive tx and have just about outlived the stats on my first line tx and maintained excellent QOL It'sdefinitely a viable choice.

  • Kandy
    Kandy Member Posts: 424
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    Indenial, I also agree that compromising your lung is not a good idea. I do hope you get to NED soon. I totally understand where you are coming from. It is very difficult to put trust in others opinions on your treatment when you know it is critical to your life. I am hoping and praying that you find some peace in your treatment plan soon. Wishing you the best.

  • minxie
    minxie Member Posts: 239
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    I was diagnosed with TNBC in the right breast 7.5 years ago, did BMX and ACT chemo, then had a local recurrence 3 years later, did lumpectomy and radiation. This April a mass was discovered in my left lung. June 13th I had a thoractomy and am now recovering at home.

    I had my first followup yesterday since my thoracotomy with my oncologist. The path report says they got the tumor, clean margins (since they took the whole lung lobe), but 2 out of 11 lymph nodes tested had cancer. He is classifying me as Stage 4 NED. He outlined 3 options for treatments. 1) Do nothing for now 2) start a chemo - Xeloda was suggested since I really don't want to lose my hair, and there are studies where Xeloda was used to "mop up" TNBC after traditional ACT and surgery 3) Possibility of trying an immunotherapy trial - but that would involve Taxol.

    He says my case is unusual with TNBC, both because of the length of time to metastasis (7.5 years) and because it's a single isolated metastasis. There's no real clear cut treatment to follow here. He's going to consult with Dr Carey in NC (TNBC specialist), who I saw after my first local recurrence 4 years ago. He also wants to do PET scans every 3 months to check progression. Problem is my insurance, Cigna, will deny the scan as "surveillance" - he says it happens all the time with them.

    I'm trying to figure out how to pay on my own for a PET, but at 8K for each one, that's impossible. Anyone do GoFundMe? I hate to ask for money, but... I'm going to see my oncologist at the end of next month and see how we want to proceed - he wanted the PET done before the visit but it doesn't look like I can make that happen right now unless CIGNA surprises us. Any advice on how to proceed with TX, scans, anything appreciated!

  • jensgotthis
    jensgotthis Member Posts: 671
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    Have you asked about a cash rate for the PET Scan? I've heard others mention this and the rates are way more reasonable than the what insurance is billed for. Just a thought. I'm sure others will chime in with good advice

  • Goodie16
    Goodie16 Member Posts: 297
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    Minxie, my insurance also denies my PETs (every 6 months) as not necessary when "other testing is available." Once my hospital gets the insurance denial, they send a bill for the cash rate. I pay around $650 per PET.

  • indenial
    indenial Member Posts: 125
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    Call your doc, they should be able to order an alternative test that hopefully your insurance would cover. My onc actually prefers bone scan plus CT instead of PET scan, but I'm sure it depends on the way your mets show.

  • Goodie16
    Goodie16 Member Posts: 297
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    My doc has been fighting with my insurance company since they started refusing the PETs last year. I'm just thankful for the semi-affordable cash rate for the PETs from my hospital. We've done CT/MRI scans in the past and then insurance started to take issue with those as well. I swear half of the frustration of having cancer is fighting with the insurance company!

  • minxie
    minxie Member Posts: 239
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    Thanks so much for the cash rate suggestion! I called the hospital and they do indeed offer this option, but they won't tell me the amount until I actually register for the scan. But I'm sure its significantly less than 8k. Great idea, thanks again

  • donsuzbee
    donsuzbee Member Posts: 43
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    met at left adren gland. SBRT used as treatment. Am now NED 2 1/2 years. Still on A/A therapy due to spinal Mets.

  • heidihill
    heidihill Member Posts: 1,856
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    My then 7-year old is now 16, so chemo was worth it for me, independent of whether it was the best for me. There are way more options now than then though and it probably is important to have a doctor or have a second opinion from a doctor who is able to confer with colleagues involved in the forefront of different aspects of research pertinent to you. I don't think it would be a wild goose chase at all.

    Are you still progesterone receptor positive? If not, this may be a marker of aggressiveness and would speak for chemo. Mine was barely positive.

  • Foxanne
    Foxanne Member Posts: 11
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    Are you doing ok ? Minxie

  • indenial
    indenial Member Posts: 125
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    Hi Foxanne! Wow, I haven't even logged into this site in 3 years, but I saw your comment and wanted to respond! I ended up having SBRT 2 years ago to my rib met, which was very effective. I have been basically stable for the last 3 years on just letrozole & Xgeva - no new mets and the rib met is barely visible on scans. I'm feeling OK, just tired all the time. I have osteoporosis from treatment and brain fog and other treatment-related side effects, and I struggle to keep up with housework or have any energy for hobbies, but my quality of life is still quite good. I couldn't even have imagined this back when I got the stage 4 diagnosis - I thought that was it, that even if I lived a long time it would be with poor quality of life and constant medical intervention. I go for scans 2-3 times a year and see my oncologist every 6-8 weeks, but other than that I'm living a pretty normal (though low-energy) life. :)

  • anotherone
    anotherone Member Posts: 550
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    thank you for checking in. Any idea about eelder?

  • aprilgirl1
    aprilgirl1 Member Posts: 787
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    Hi there, this is an interesting topic to me because i am newly diagnosed stage 4, all my mets are in lymph nodes (superclavical and mediastinal) . None under my arm and nothing in my breasts. When I asked my oncologist how many lymph nodes she said "too many to count". In addition, the mediastinal lymph nodes seem to have broken open and there is tissue below them that is either mets or inflammation, but not attached to anything. This was shown on CT and Pet Scans with contrast. I have no other areas of concern show up and my mammograms and blood work have been perfect. My onc told me that technically I am stage 4 but it seems to be all contained in these lymph nodes and possibly in the tissue below the mediastinal nodes. I will tell you that shortly after my first Fulverstrant injection on 11/22 i felt some symptoms go away. I have been complaining to my general practitioner and my oncology PA that I couldn't take a deep breath and felt like I had bronchitis or something. I was told by all doctors it was a virus and my lungs were clear and pulse oxygen perfect. 3 months later, we find the mediastinal nodes are pressing on my windpipe, which created a weird pressure , especially when lying down. That has gone away - makes me hope the Fulvestrant and Ibrance have shrunk these nodes a bit. Will find out in February.


  • BevJen
    BevJen Member Posts: 2,341
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    Aprilgirl1,

    I started fulvestrant/faslodex in June prior to Ibrance (started in late July/early August). My L side had been very lumpy, and we always attributed it to scar tissue on that side. But there was so much scar tissue (two reconstructions, rads, etc.) that we were never sure. Sure enough, after I started fulvestrant, that side felt softer and less lumpy. I am sure that those first couple of shots did something. So you are probably on to something.

    Good luck.

  • amontro
    amontro Member Posts: 185
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    I've had Stage IV since 2008 with mets to one lung and my spine which haven't changed in all this time. I'm still having the same treatments, except for radiation in 2008, on Herceptin and armidex. I don't concern myself with my diagnosis. I have more problems with side effects from other meds through the years to this day. Until a few days ago when I ranted about Zometa, I haven't posted on this board since 2016, when I retired, and I am now using the library once or twice a week. I'm feeling better than I have over the last 11 years; side effects be damned!