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Metastasis to bones ONLY, no other organs

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ItalianPainter
ItalianPainter Member Posts: 1

When I was diagnosed with breast cancer I was already stage IV. I have metastasis to my spine, pelvis. Sternum and some ribs. I have invasive lobular carcinoma. My oncologist told me that "with women who present with bone only metastasis, they live for years with ibrance and letrozole ". This is as near a quote as I recall it. Does anyone have similar experience? Can anyone point me to the literature that reinforces this information. I plan to ask my oncologist that question, too.

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  • sunnidays
    sunnidays Member Posts: 161
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    The oncologists might not have any exact literature to point you to they maybe be going to by their own experience in their practice, I was told by one of the doctors on the oncology team bone only Mets is the best of the worst outcome there are no guarantees though they don't always know why some patients do well and other do not.

  • candy-678
    candy-678 Member Posts: 4,144
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    Bone-only mets is the "better" of the mets. Each person is different and their course with the disease is different. But as an example, I have a "real" friend-- lives in my town-- that has bone-only. She has been stable for 9 years on Arimidex and Xgeva only. She just had progression and is looking at changing to Ibrance and Faslodex.

    We have a Bone Met Thread on here that you can read and post on for more information. I will post the link, but will have to copy and paste on my next post.

  • candy-678
    candy-678 Member Posts: 4,144
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  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
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    Italianpainter,

    I have a single bone met that was dx’ed 10 years ago. At that time drugs like Ibrance and Verzenio were still in trials so I have been on an AI, and nothing else, for 10 years. I did have rads x15 and two years of an older bone strengthener as well.

    This is just an anecdote and it’s certainly possible to have progression with any type of metastasis. Take good care.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Italianpainter, while I can't point to any studies, I'm sure there are some out there. However, as others have stated, the view of your MO is likely coming from experience. There are several on this forum who have bone only and have done well for many years. You'll find them on the Ibrance thread as well. In addition, while ILC can be sneaky, it seems to be a slower growing cancer.

    As was mentioned, there are no guarantees. All of our individual situations are somewhat unique as we don't know how the cancer will behave, what treatments we will respond to and which treatments we can tolerate. While I am not bone only, I am coming up to five years with MBC. Pushing for the next five years! I know it's tough at the beginning. Wishing you lots and lots of time.

  • olma61
    olma61 Member Posts: 1,026
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    Here is one study:

    https://bmccancer.biomedcentral.com/articles/10.1186/s12885-019-6311-z


    “Conclusion

    Stage IV breast cancer patients have different clinicopathological characteristics and survival outcomes according to different metastatic sites. Patients with bone metastasis have the best prognosis, and brain metastasis is the most aggressive subgroup."

    The researchers looked at MBC cases from 2010 to 2015 in the SEER database. (seer.cancer.gov in case the link doesn't work.)

    Johns Hopkins used to have a message board where the staff used to answer questions about cancer from patients, family and friends. Every time someone asked about bone-only metastatic breast cancer, they would consistently say “such patients could live ten years or more".

    No promises and no guarantees, but those of us who d stay bone-only do tend to have a better prognosis than some others.

    Welcome to the forum, sorry you've had to join us but we have a great group here

  • divinemrsm
    divinemrsm Member Posts: 6,204
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    Painter, when the oncologist walked into the room and told me I was dealing with metastatic breast cancer to the bone, she followed up by saying, “With treatment, you could live years."

    Looking her straight in the eye, I replied firmly, “Define 'years'."

    Because that is a subjective statement. Some doctors may think 5 is a good number of years, some 10. Me, as a patient being diagnosed in my early 50s with mbc had planned to live until I was at least 100. Seriously. So “years" to me meant at least 25 or more.

    My onc said, “Five….eight….I have a patient who's going on 15 years."

    That was early 2011. I've had some good responses to different treatment with stretches of stability along with ups and down with stuff that didn't work.

    A few more things: The 'bone mets only' can be a sensitive subject to those whose mets are elsewhere, so I try to be mindful of that. And mbc can still progress from bone to other organs in a short time, too. There's no certainty.

    I wish you the best.



  • AngieTexasHillCountry
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    Hi there. You and I are in the same MBC boat: I was diagnosed Invasive Lobular Carcinoma last month and just last week learned that I have mets to (many, many) bones, but no "soft organs." (Dang dense breast tissue!) I start treatment soon.

    My oncologist told me she's has patients live "many, many good years" but like a respondent above, I wondered what "many, many" meant to her. She followed it up with, " We have women who have lived 7, 8 and 9 good years."

    I am slowly getting over the tidal wave of emotions of the last month and have read enough and prayed enough now to know how I want to go about my next X years: I'm counting on five-ish years and will live intentionally and joyfully as much as possible. If I get to 7 or 9 or 12 yrs, wouldn't that be great! I don't want to be macabre about it, but I do want to be realistic. With two sons in college now I want to show them how to live joyfully *today* regardless of what life (or their biology) throws at them.

  • candy-678
    candy-678 Member Posts: 4,144
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    Divine's comments make you think though---- "many" is 10 years. Not what we want to hear. This disease sucks.

  • divinemrsm
    divinemrsm Member Posts: 6,204
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    candy, your comment brings up another perspective. Some women are diagnosed with mbc at a young age and have small children. If a woman is in her 30s and has two kids under age five (or no children), is five or nine years going to sound like a lot? Hell no. Even 20 more years at that young age feels like you're getting robbed. For me diagnosed in my 50s, to get 20 good years wouldn't seem quite so bad.

    Angie, you have a really good outlook and I wish you well!


  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Divine, my MO said I would do well for a “good long time” but he has never wanted to be more specific, which I get. I’m now at just under five years but with progression to the liver, while hopeful, I remain realistic. Ten years sounded great but, as time slips away… I’m with Candy. This sucks…

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
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    I think divine brings up a good point regarding where one is in life. I was dx’ed at age 55 and my dd’s were both adults. Now that I’ve hit the ten year mark, I want ten more! I really try to focus on the present as I have no control over the future.

  • beth1965
    beth1965 Member Posts: 203
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    My doctor as well of not really defining her “it’s not a death sentence” so what is it then I think. Is it a “less life sentence”

    I know I have a lot of bone Mets and feel doctor thinks I will defeated before I really begin maybe if I knew exact amount how many Mets Hoping that’s means that my chances of longer life are still able to happen even with lots


  • olma61
    olma61 Member Posts: 1,026
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    yea I guess the best thing about the possibility of lasting ten years with MBC is that other thing that is often said to give us some hope - perhaps we can “last long enough for the cure to be developed “ or at least...more new lines of treatment, hopefully with fewer side effects

    I definitely wanted to (still want to) see my 70s in good enough condition to be fairly activeand that means lasting a bit longer than ten years


  • sunnidays
    sunnidays Member Posts: 161
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    I think the issue is even with all the scientific knowledge they have, they don't know why some do well and some do not. I am sure oncologists see patients who they think will do well and do poorley and conversely some patients who surprise them at how well they are doing.

    This is why the general consensus is that cancer is not currently curable but certain cancer treatments may cure cancer.

    I also suspect although I have no evidence, that some attributing long cancer control to a medication they have been prescribed it's actually that cancer has gone into remission which would have happened anyway.

    To sum up someone with a bone-only presentation should do well but there are no guarantees because oncologists and resseerches don't have a complete understanding of cancer.

  • Pabby1044
    Pabby1044 Member Posts: 3
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    I have just turned 77, and was diagnosed with MBC just a month ago. A shock….but am now on IBRANCE and Anastrozole…..but the Anastrozole seems to have created a lot of bone pain….so they had me stop it 3 days ago, and today am on my way to see my Oncologist and to have an infusion of Zometa. One of the things we will be discussing is the drug….and I am wondering how many of you have had that exact experience. I have invasive ductal carcinoma….and it’s spread to the pelvis, left femur, right humerus and a couple of ribs. Had a bone biopsy to the iliac right crest, and it seemed to be very little soreness for at least a week, but has been very painful since 5 days ago, while on Anastrozole…..and still is even after stopping that on Thursday. Arghhhh! 22 years ago, I had DCIS in the left breast, had a mastectomy and reconstruction (Tram flap)….and it’s that same breast that has the large tumor…..the breast imaging places won’t do a mammo on…..

    Anyway…..any hints on Anastrozole would be welcome!

  • olma61
    olma61 Member Posts: 1,026
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    I can say in my case, with HER2+ metastatic breast cancer, Stage IV de novo, my good response to treatment so far can definitely be attributed to the anti-HER2 drugs I'm on. Although not everyone who is HER2+ has the same response to first line treatment, the development of Herceptin (and now Perjeta and the new ADCs ). — has made a huge difference, not only for MBC but for early stage pts. And now, possibly for people who are HER2 low or with certain genetic mutations.

    Now, let’s see what happens with ERSO for hormone positive cancer. In ten years we will know if it is really the “cure” that Bayer hopes it will be

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
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    pabby,

    I have been on all three AIs and had joint and some bone pain with all three. I manage by trying to move around as much as possible, Aleve during the day, and cannabis in the evening. Stretching and yoga have been very helpful as well. I have had mbc with no progression since 2011. Since AIs have been my only tx, save for rads to the met on my femur, I am very motivated to keep taking them. Take care.

  • beth1965
    beth1965 Member Posts: 203
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    olma61 I new nothing about erso just reading up on it now

    It would be nice if it turns out to be as promising as they think it will be


  • moth
    moth Member Posts: 3,293
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    ItalianPainter, the best study on that topic that I've been able to find is this one. Table 3 demonstrates quite well how outcomes vary on hormone receptor status and location of mets.

    It is based on data from 2010-2015 and these would be de novo pts. On one hand, de novo tends to do better so those with recurrent might want to mentally adjust those curves left a bit. On the other hand, we've had A LOT of new treatments which are adding many OS (overall survival) months for all subtypes (ADCs for HER2, cdk4/6 inhibitors & new endocrine blockers for ER+, immunotherpy and ADC for triple negs) so that would nudge the curves to the right....

    Ultimately we cannot predict very well where on the curve each individual will end up. We all hope to be "exceptional responders" of course

    https://bmccancer.biomedcentral.com/articles/10.11...


  • olma61
    olma61 Member Posts: 1,026
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    beth1965 - yes it sure will. They’ve bet quite a bit of money on it...let’s hope they know what they’re doing

  • katyblu
    katyblu Member Posts: 221
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    I agree with all that “many, many years” is a very subjective term. I was dx’d 2 months ago at age 41 with innumerable lesions to my skull, jaw, ribs, spine, and pelvis. My MO told me that MBC was no longer a death sentence and the bone mets are the best of a bad situation. He told me he’s seen patients with a good quality of life for 10-15 years. And that was just hard to take…. It may sound like a long time, but that means I’ll likely never make it to 60. I’ll be lucky to make it to 55. But, as my DH says, they are making strides. So hopefully this “many, many years” can get us to better treatment which will extend that time period.

    Italian Painter, I hope your treatment goes well and you have “many, many years” x2!

  • beth1965
    beth1965 Member Posts: 203
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    if the amount of years we get is at least long enough to get us a possible cure that’s I guess what we try for

    And hopefully Olma the Erso drug is going to be our life saver I have not come to the part about all the money spending yet just making my way through info them spending lots of money makes me hopeful if they feel so positive


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
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    katyblu,

    I think mo's have a fine line to walk when giving a prognosis to stage IV patients. Since they truly have no idea how long someone will live they just use vague terms that are pretty open ended. I was dx'ed 10 years ago and have been fortunate to have lived a fairly normal life. I am not a worrier by nature so never spent much time thinking too much about the future (I was 55 at the time) until I hit the ten year mark. Now it feels like the clock of doom is ticking down for me. I am working hard to fight that feeling, but this disease messes with the mind in innumerable ways.
    On another note, I do remain hopeful about treatment advances. When I was dx'ed, Ibrance, Verzenio, and Kisqali were still in trials. I watched them gain approval and become common treatments for so many and that does give me hope for the future! Oh my, my optimism bounced back quickly 😂.

  • sunnidays
    sunnidays Member Posts: 161
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    An oncologist might be very warey because they are afraid of being sued by the patient's family if they give numbers they give don't work out, also oncologists probably learn to read their patients so the same information might be presented differently to different patients.

  • gailmary
    gailmary Member Posts: 449
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    To continue this thread, I will add what my MO said. I never asked, but at my second visit, after the pet scan showing I had 1 met to head of humerus he said I could go 25 yrs. Then after glancing at my age on my chart, quickly backed that down to 20 yrs. Good chance I'll die of something else. I'm not dumb. I know there's a good chance I won't be that lucky. But it certainly gives one hope and we all need that. I do question what my quality of life will be with possible wicked SE.

    This is the same MO that at the first visit looked at me like he had to tell me to go home and plan my funeral. I chewed him out real good at that 2nd appointment for that look on his face.

    I'm assuming all of you with bone only Mets are/were on a bone drug. Have you had more bone Mets develop while on those drugs?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,052
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    gailmary,

    I was on Aredia, an older bone strengthener for about three years. This drug is not commonly used anymore but is in the bisphosphonate family. My mo took me off of it because of concern over spontaneous femur fractures with long term use. That means I have been off bone strengtheners for seven years.

  • mozuke1
    mozuke1 Member Posts: 40
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    I’m following this thread with interest as I was diagnosed last month. I'm 49 and had planned on at least 30 more years! I’ve just received a blow last week as I was initially considered oligometastatic, but an MRI done in prep for a bone biopsy showed many mets to my pelvis, not just the one visible on my PET scan. This takes the focused radiation on what were thought to be my few mets off the table. My dr still recommended sticking with the chemo I started since my breast tumor is shrinking and I am tolerating it well.

    Hi Caryn, I’m the knitter from Monday’s support group meeting!😁

    Maureen