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

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indenial
indenial Member Posts: 125

...can you chime in regarding what treatments you've done, how aggressively your onc has treated the mets, etc?

I just received the best news possible since being diagnosed with mets last month. It seems it hasn't spread to other organs and I only have a few small bone mets (no more than 3, and 2 might just be inflammation & didn't show on CT). Still having more testing but overall it seems quite favorable. My onc described it as "minimal metastasis" but didn't use the word "oligometastases" so I'm not sure if I qualify for that category. But regardless... right now I'm only doing AIs (possibly will add Ibrance and Zometa in a few weeks) and not sure if that's enough? Meeting with RO to discuss radiation as well. I guess I'm just curious how long-term survivors have managed to survive so long and what treatments seemed to be best? It would be so amazing if I could make it at least 10 more years to see my child graduate!!!

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  • Kandy
    Kandy Member Posts: 424
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    I was originally stage 3 in 09. I was on arimidex until Oct 2013. I was diagnosed with one met to the pelvis. I was switched to Faslodex and also get Zometa. I had stereotactic radiation to my met. I have stayed NED since. I have had pain in my pelvis and recently had surgery to make the pelvis stable. Best of luck to you.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    I am about to be 5 years out from my Mbc dx. I had a 2cm met to my upper femur. I had rads x15 to the femur, almost two years of Aredia and am on Femara. No progression and a virtual normal life. Never had chemo, but it's always there if I need it. My bc is a lazy grade 1

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
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    my dx was 5 years ago, stage 4 de novo.Two primary breast tumors, lymph activity and one distant met on my acetabulum. We were aggressive, even tho I was stage 4. I started with chemo, then bmx, then rads to bone and chest wall. Then oopherectomy. Three and a half years NED on faslodex and Exemestane. Then progression a year ago, two small bone mets (I was having multiple reconstructive surgeries and feel that provoked the progression. ) One we radiated because it was close to spinal cord in neck, the other is small and stable. Feeling good on my current tx. Lots of years ahead. One kid in high school, one just started college . I'm not going anywhere soon. No reason you shouldn't be around ten more years plus.

  • indenial
    indenial Member Posts: 125
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    Thank you, this is really helpful!! I am meeting with the RO in 2 weeks and thinking I do want the met(s) radiated, hoping she will agree! I already had chemo at stage 1 but obviously it didn't work... but neither did tamoxifen... hard to know what is the best course of treatment, even my onc seems kind of at a loss as to which options are best!


  • Fitztwins
    Fitztwins Member Posts: 144
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    I have minimal metastases, more than 4, most measuring in mm not cm, and only in the spine and lungs.

    I have been on herceptin pretty much for the last eight years, switching up with AIs. Take the easy treatments. Remember this is a marathon, the longer we can stay on a drug the better.

    I used to freak out about number and size. Now I decided just to freak out if they affect my quality of life. And right now, none of them (that I know of) are affecting me.

  • pwilmarth
    pwilmarth Member Posts: 138
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    I was de novo mets with one small spot on my rib that could be considered part of the primary tumor and two tiny spots on the liver - millimeter in size.

    They had just approved Herceptin and Perjeta as first line treatment in metastatic disease shortly before I was diagnosed. I was NED within 6 weeks of starting this protocol. By the time we got to radiation therapy, there was nothing to radiate but the lymph nodes, which we did.

    My oncologist has never used the word oligometastatic disease, but she has used the word cure, which I believe she thinks is possible because of the very limited metastasis on the initial PET scan. I choose to use the word remission.

    Regardless, my disease has been stable with every subsequent PET scan and the plan is to continue Herceptin and Perjeta indefinitely, since there's no data to support stopping it. It's not really an issue for me because I have very few side effects from the drugs.


  • TonyaB
    TonyaB Member Posts: 6
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    I do not have the same breast cancer as you but I wanted to share my story as encouragement. I am triple negative (limited options) with a single met deep in my chest wall. I have been on this journey for 9 years. I just saw my daughter graduate last Thursday. I never thought I would make it. Keep the faith.


    Tonya

  • jensgotthis
    jensgotthis Member Posts: 671
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    I was diagnosed in Dec 2015 and have o my two or three bone mets. My Onc is proceeding in an aggressive manner with curative intent but hasn't used oligiometastatic to describe me. My RO did though. I've done chemo, UMX, and rads to the two bone mets that showed up on my PET. Next up rads then Tamoxifan

  • Elpida
    Elpida Member Posts: 1
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    Hi there...I am wondering where you are being treated where they are proceeding with curative intent? I have one bone met and I have on my own accord decided to get aggressive with the hope that I may be curable. I am on a/c chemo right now and will be undergoing radiation at MD Andersen afterwards. This is opposite of what my New York-based oncologists wanted me to do, but I am going with my gut.

  • jensgotthis
    jensgotthis Member Posts: 671
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    I've heard that MD Anderson is excellent. I'm being treated at UCLA. While my MO said curative intent, I'm hoping for a long period of NED. I too wanted to be aggressive - I'm 41 with a 7 year old and want to see him grow up.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    Ladies,

    Though in the eyes of many, I am not going aggressive, butthe fact that the biopsy of my bone met showed it was grade 1 like my breast tumor, made me feel that AI's were the best course of tx for me. I will go on chemo if/when the situation merits and studies suggest that chemo may be more effective for the chemo naive.

    I have had 5 wonderful years. I walked my younger dd down the aisle, have seen the birth of two grandchildren, traveled and simply lived every day. My tx has had little to no impact on my life and that's fine with me.

  • indenial
    indenial Member Posts: 125
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    Thank you all for sharing!! <3 I am still trying to figure this out... turns out I have only ONE met (the other possible spots were just inflammation). This is awesome news, but also makes me question my treatment.

    I had my ovaries out and am now on Femara. I can add Ibrance and Xgeva if I want, but doctor isn't insisting, and I'm reluctant to be on a big cocktail of meds indefinitely, especially as I don't handle meds well. I hate the Femara as it affects me mentally -- I'd prefer purely physical side effects! But what I am really wondering is if I should be on chemo??? I did have chemo when I was early-stage, and obviously that didn't get all the cancer since it metastasized. So part of me understands that since I have a slow-growing cancer, chemo wouldn't be all that effective. But the other part of me thinks we should throw everything at it... That if I was stage 3, I'd certainly be having chemo, and one met can't be THAT much worse than stage 3??? I don't want to be over-treated and deal with more side effects, especially if it may not change my prognosis, but obviously I want to do everything possible to kick this!!

    I do know I want SBRT if possible to the one met (will be discussing later this week). But I don't know what is best for systemic therapy.

  • Kandy
    Kandy Member Posts: 424
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    Indenial, I really understand what you are saying because I was right in your shoes. Try to look at it this way. When you were stage 3, they were hoping that the buggers hadn't landed anywhere yet and they were cleaning up your blood to prevent that from happening. But the fact was, there were cells that had already landed in their new home. The cells stayed asleep until for some reason they woke up and formed together to make your met. The key is to put these cells back to sleep. Technically there is no cure once mets is found. Don't underestimate the power of hormonals. There are many that stay NED for years. As long as you get to NED, does it really matter how you got there? I think the better quality of life is better. If you are hormonal positive they can be just as powerful or even more powerful than chemo. Remember if chemo didn't kill it the first time, chances are it won't this time. Just get those cells back to sleep. Best wishes to you.

  • Nel
    Nel Member Posts: 597
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    I was dx with a spread to my adrenal gland almost 3 years ago.  Returned to Herceptin (had used in my initial treatments) and added tykerb.  Was NED within 8 weeks and remain so.  My onc's thought was let's begin with the treatment that will maintain quality of life, save the big guns for later.  So far so good. 

    The fact that cancer has returned doesn't mean chemo did not work initially.  They hope for a cure, but about 30 % of the time - some cells are hiding somewhere and will show up at some point.  We are now in this for the long haul - my goal - to remain NED or stable fro as long as possible with a focus on quality of life not quantity.  

    These are difficult decisions to make, focus on what is right for you and what your longterm goals are.  Many of us are here for a long time!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    indenial,

    I agree with Kandy. I know we are all different, but I am living (and living well!) evidence of the fact that more tx is not always better. I apologize if I missed this, but have you had a second opinion? That's what helped me feel comfortable with my decision to stick to AI's. Take care

  • indenial
    indenial Member Posts: 125
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    No, my insurance will only cover in state so I haven't gotten a second opinion from an NCI hospital and don't really see the point in a second opinion elsewhere. My oncologist did present it to tumor board...

    I think what is troubling me most is a study I read that said a small portion of those who are oligometastatic can be "cured." It sounds like some in this position are treated more aggressively and I'm afraid I'm missing out on a "cure," even though I do know that stage 4 is not considered curable. I'm just struggling to wrap my head around it all and understand why everyone else gets chemo and I don't. Also, I failed tamoxifen, so I'm scared I'll also fail the AIs.

    It feels like a life and death decision, and I'm scared I'm making the wrong one.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    indenial,

    Even if you can't get to an NCI center, a second opinion from the best mo you have access to can provide comfort and confidence with your choice of tx plan. I think this will go a long way toward helping you feel that you are making the best decision you can.

    Oligometastasis is a strange animal. Not all oncologists believe such a state exists. They feel that once the horse is out of the barn, that metastatic disease is metastatic disease, period.

    As for cure, no one is really certain why that happens in a very tiny percentage of patients. As I've said, Ihave never had chemo, and there are a few de novo stage IV ladies (and some who've had recurrences) on bco who haven't either. Also, even with chemo, the "cure" rate is only 1-2%.

    I know this feels like an impossible place to be, but once you find that you are as comfortable as can be with tx choice (knowing that there are no guarantees), you can focus on doing what is in your power and not be as stressed about all the "what ifs". You can have a good quality of life. It may be difficult to envision now, but when you start a tx that you feel confident with, then you focus on living, not dying

  • jensgotthis
    jensgotthis Member Posts: 671
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    I really echo what was said above. Be comfortable with whatever treatment you choose. That is really the most important job you have. You will find cases here where chemo was done and cases where it wasn't, and that highlights just how unique each of our cases are.

    I wonder too since you've already done chemo if that factors in to them not wanting to do it again.

  • Goodie16
    Goodie16 Member Posts: 297
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    indenial,

    If it helps ease your mind at all, I still haven't had chemo. I had only 1 met, to my brain, and it was removed surgically and treated with radiation. My only treatment has been hormonals. My oncologist didn't recommend chemo at the time of my stage 1 diagnosis because oncotype score was so low.
    I will echo the others, though, in that if you feel you aren't receiving enough/right treatment then seek a second opinion. I understand travel difficulties as I usually have to travel 2+ hours for my second opinions, but it has been worth it to put my mind (and my local oncologist's mind) at ease. Being comfortable with your treatment plan is vital.

  • zarovka
    zarovka Member Posts: 2,959
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    Indenial - First - having just one bone met is absolutely awesome fantastic news. How did they figure out that the other mets were inflammation? We're all quite tired of being freaked out by false positives in the radiology reports from our kind but overly conservative radiologists.

    Statistically and as a group, people with stable tumors and people who are NED have the same outcomes in terms of progression and survival. My (simplistic, evolving and possibly wrong) understanding is that metastasis happens when gangs of 10 to 100 cancer cells mutate into something mischievous then go off and colonize some tissue. These cells are not necessarily associated with tumors, particularly dormant tumors. Once you have metastasis the cells that might mutate and conspire in this way are everywhere, whether you have tumors or not. Scans don't pick up these trouble makers.

    If that is all true then having a stable bone met and being NED are not different and fighting aggressively with the objective of getting rid of that (stable) bone met isn't going to help.

    However, as you have read, doctors studying oligometastatic disease found that the removal of the mets at an early stage DOES increase survival. They have the statistics to support this. The University of Chicago folks are getting those results on people whose cancer expresses a certain microRNA.

    I expect that this is a complicated space where the outcomes depend on the characteristic of the cancer. Can you write to the folks at U of Chicago and see if they have any collaborators in your state? Would they work with your doctor to test how well your cancer might respond to this experimental oligmetastatic treatments? I don't think a random second opinion will help here as this is a research area. You really need someone working on treating oligometastatic breast cancer with mets to the bone. They may or may not be associated with an NCI research center.

    You need to know you are doing the best for yourself because this is life or death issue. However, what we all want is to be cured in the sense that we don't have to take drugs or worry that the cancer will progress. The oligometastatic treatments are interesting, but they don't get you to that mental state. They often work but not always. In that sense you are not missing out on a "cure".

    Your scans strongly suggest you have a winnable fight with a lot of good options. Those good options do include not doing much. Keep pulling the string until you are comfortable with your treatment.

    >Z<

  • eelder
    eelder Member Posts: 152
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    Does oligometastasis mean you have 4 or less mets? I have 3 - all on my liver. Does size matter? What are the criteria they use to determine this? My oncologist never discussed this with me, nor did Stanford or the individual at UCSF whom I spoke to. Two of my mets are about 1 cm and 1 met is about 2 cm. I was told by all these are "small." I am on ibrance and letrozole and getting lupron shots every 3 months. I was told by many this was the first line of treatment for people in my case. But am I doing enough? I'm told ibrance is wonderful and can do remarkable things which is why I guess I'm on this, but hearing "curable intent" makes me excited and confused because no one said that to me. I've only been told my goal is remission (also completely fine with me!).

    Related, I hate how scared I feel some days. Some days I am hopeful, optimistic, and feel so strong. Other days I am crippled with worry. I have two boys - 8 and 5. The thought of leaving them and my husband is too much to bear some days. And then other days I feel such deep convinction that I will be around to see them graduate high school and beyond. The bouncing around of emotions is just too much sometimes.... sigh.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    Hi eelder,

    Oligometastasis seems to be a status that is not always clearly defined, and is not universally accepted in the world of oncology. In general, most define it as less than 3-5 mets to the same organ, or bone only. However, there are probably other factors involved, such as size of mets and grade, etc. You have been to two excellent facilities, so it sounds as if you've gotten sound tx plans in place.

    Are you doing enough? What is enough? Is getting the harshest tx enough? Remember, there is no guarantee at stage IV so do you want to forsake QOL for quality time? My point is, more doesn't equal better. Curative intent? I find that an odd term since the cure rate for stage IV remains dismally low (1-2%) and no one is sure why it even happens to those lucky few.

    I believe we live in the same geographical area. My primary tx is at Kaiser Santa Clara and my second opinion mo is at Stanford. I have a single low grade bone met. It was radiated 5 years ago and I have also been on an AI the entire time. No progression, NED and a virtually normal life. Am I doing enough? Well, given my present state and the fact that I have lived a full and happy life since dx, I would say "yes"!

    Might have chemo or harsher tx "cured" me? I will never know and wouldn't have traded the past 5 "normal " years for harsher tx and a minuscule chance of cure. I have nothing against those tx BTW. They will always be there when I need them and I would not hesitate to go that route if necessary.

    I know how scared you are, as the beginning is the hardest, especially with young children. As you become confident about your tx plan, it will get easier and time does help. See if you can add your dx and other particulars to your signature line. This will allow others with similar dx to chime in. And of course, feel free to ask anything or even pm me since we're "neighbors". Take care

    Caryn

    PS: This thread on oligomets is worth a read:

    https://community.breastcancer.org/forum/8/topics/...


  • HLB
    HLB Member Posts: 740
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    There is a rad onc studying this issue at U of FL Shands hospital in Gainesville FL. His name is Paul Okunieff. He will look at your records and decide if you are candidate for sbrt or the VERO machine which is at their Jacksonville location. He treated 3 of my spinal mets but unfortunately a bunch more popped up a few months later. Oh well it was worth a go. He is a wonderful Dr and my hero. There's also someone doing a similar TX for limited mets at MD A but I forget his name.

  • eelder
    eelder Member Posts: 152
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    exbrnxgrl.... THANK YOU.... your response helped. I always thought this line of treatment was enough, but reading the phrase "curable intent" got me all anxious thinking, "Wait - so we can CURE this? I didn't think we could." Here's how I view Stage IV breast cancer based on talking to several docs in what I feel is a very medically competent region: We know a lot. We know more now than we did 3 years ago and we're going to know more still in 3 years. Ibrance (what I'm on) was rushed through the FDA and made available in Feb 2015! It's still so new! And they continue to come out with new things all the time. The Stanford doc even said to me, "Every 6 months we are changing things, learning things, developing new treatments.... it's hard for us doctors to keep up." Call me delusional, but that is GREAT news. I was told by some doctors you can almost view Stage IV breast cancer as a chronic disease. We don't have a cure, but we have many tools and treatment options to keep people alive for many, many years. Obviously every case is unique and every cancer behaves slightly differently, but it's not like we've got 1 or 2 chances to get to NED. While I want those liver mets gone (psychologically more than anything), so long as I can live a productive life (which I'm more than doing currently) then I need to be content with that. This will be something I have to manage for the rest of my life, but I am okay with that. I hear Stanford has a trial using antibodies (immunotherapy) for ER+/Her2- Luminal B. The doctor told me in April the results are promising so far. If ibrance/let doesn't work or stops working I might head to Stanford to do this. I believe in my heart they are figuring things out as I type this. I hate that we have to worry and have it consume our lives the way it does, but I believe every year more and more options will become available. I hope others of you reading this feel like I do.


  • pwilmarth
    pwilmarth Member Posts: 138
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    So this idea of "curable" and "treatable" often gets us confused. We want "cure" because it, wistfully, gives us hope that the battle is over. But treatable isn't a bad thing. We associate cancer with death, and complications that alter the quality of our lives.

    But there are other diseases that are not "curable", but they are treatable. They have predictable courses with complications and decreased quality of life. The number one disease that comes to mind is Diabetes. It's not curable, but it is treatable. Because high blood sugars are damaging to circulation, every part of the body is at risk for complications. And people do experience these complications. Yet, they live productive lives for a long time. As the disease progresses, they deal with many things including loss of vision, amputations due to poor circulation, peripheral neuropathy, and kidney failure requiring dialysis.

    Personally, I don't focus on the idea of cure. I focus on managing the disease and maintaining a good quality of life for as long as I can. But I am closing in on 62. If it's not cancer, it will be one of the other diseases of old age - heart disease, stroke, diabetes (which I don't have). We just use different tools to try to control these diseases.

    Our treatment is aimed at controlling the disease and keeping the damages to a minimum. The frequent scans we do are just one of the tools in the doctor's bag. The drugs are just one of the tools. We're better at controlling this disease today than we were 20 years ago. And we'll be better at it 5 years and 10 years from now.

  • eelder
    eelder Member Posts: 152
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    I share your view pwilmarth. Thank you. While I would LOVE a cure, I'm okay with treating this and living life. I know many with diabetes and the strides they've made with that disease are exceptional. Doctors tell me the same with breast cancer. Yes, there are some BC's that are more complicated and trickier to treat than others, but we are learning SO MUCH every day. I choose to focus on this as much as I can. It makes me happier, gives me hope, and allows me to live my life with more peace rather than focusing on what the statistics say or what *could* happen. I still place my bets on immunotherapy :) I feel in my heart that will be the ticket for many of us in the coming years.... they're working on it NOW. Sending good energy to that!

  • zarovka
    zarovka Member Posts: 2,959
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    Long term survival for stage IV breast cancer hasn't change much for decades, but I do sense that the statistics will improve with our cohort. It is scary to be in this transitional group making life or death decisions with limited information. But also exciting and interesting ... and very hopeful.

    I also intend to do everything I can to make it, but it doesn't mean doing everything at once. And we have a lot of options.

    >Z<

  • indenial
    indenial Member Posts: 125
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    Zarovka - they figured those other spots to be inflammation (or something like that) because they didn't show up on CT, MRI, or bone scan -- only on PET, which I hear is notorious for false positives.

    I guess the difference between stage 4 BC and diabetes is that diabetes does not have a 22% 5-year survival rate! I know the stats are outdated and I know treatments are rapidly improving but at this point in time, the majority of us do not seem to be living many many years with this.

    I'm 33 years old. I have a 7-year-old child with some special needs. I can't even imagine not being here for him. I feel like if there's even the slightest chance I can get more years, even if they are poor quality, I'd want that!!

    The term "curative intent" is definitely what's throwing me off. I am worried that if I am treated without curative intent then I may be less likely to be here longer. Maybe that's not true -- maybe those who live long lives with this just luck out -- maybe it's not their treatment choices but some biological feature of their cancer.

    I'm on a roller coaster for sure. Some days I can feel completely confident that I'll be here for a long time still. Other days I feel like my time is limited, but I feel at peace with it. Then there are the darkest days where I feel I am running out of time and I can't find that peace I normally feel. Overall I'm doing OK, but those days can be tough.

    In my heart I know chemo isn't the right choice right now. It's my mind that seems to be getting in the way. I do think SBRT makes sense (and sounds way less invasive than surgically removing my rib!!!) and maybe once I get the doc on board with that and have a plan, I'll feel better?

    I'm afraid it sounds like I'm completely panicky and hopeless. I am not -- not at all. I just feel like there is so much I don't know about cancer and so much even the doctors don't know -- and particularly this subset of us who may be oligometastatic. So much research is being done on that very issue right now but I don't feel like I have access to that research yet. I'd love a second opinion from MD Anderson. I feel like they might have the answers I need, but I cannot possibly afford to fly all the way across the country on what I do realize may be a wild goose chase.


  • eelder
    eelder Member Posts: 152
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    indenial... I hear what you're saying and can totally relate. No, it's not the same as diabetes, but compared to 10 years ago we know a LOT more about BC now. We have many options to choose from. We're learning how to keep people alive by managing this and that is how it kind of relates. I am on ibrance which was only made available in Feb 2015. It's so new and it's such a promising drug. I do believe the stats are out of date.... my oncologist said to not even look at those. As hard as it is some days (and believe me.... I have those days too) we need to keep hope alive that we will respond to treatment.... that options remain for us.... and that they continue to discover more and more. We need to believe. Our children need us to believe. I know someone in my town diagnosed with Stage 4 BC (3 mets to the liver like me) 18 years ago.... STILL HERE and STILL IN REMISSION. There are other stories like this. But I just need one. One story to tell me it's possible. I am 40. I have too much to live for too. We need to believe. Sorry for the dramatic post.... I feel the mind can be powerful and I try to stay optimistic.

  • zarovka
    zarovka Member Posts: 2,959
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    Indenial -

    I am 50 and have an 8 year old who is ready to take the car move out and get her own place, but it just makes me even more determined to find out what she becomes. We're going to make it, but not by sitting on our thumbs.

    The SBRT is an interesting option for you. I think it's caught your attention for a reason. The path to investigating SBRT treatment is not completely obvious right now given the limitations of your insurance. However you are a good writer. If you write some emails and poke around you may find options to investigate that treatment in your state. You may be able to talk your way into someones research program.

    My sternum lit up, a bit, on the last PET scan but nothing shows on a CT/bone scan only 2 months before. Radiologist and oncologist say it is likely metastasis. My hunch has been that it is nothing. I declined a biopsy and asked to monitor it instead. Ibrance, which I am already on, would be the treatment anyway. Next scan will be CT/Bone, I think.

    >Z<