Early mets diagnosis doesn't improve survival?

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muska
muska Member Posts: 1,195
edited March 2016 in Stage III Breast Cancer

We have all been told that early mets diagnosis doesn't improve survival and this is why the current standard of care does not recommend frequent post-treatment tests unless or until clinical symptoms appear. There was an interesting discussion on another thread recently - about bio markers if I am not mistaken - that prompted some folks to dig deeper and look at the sources for standard of care guidelines (thank you, BarredOwl !) It appears that the conclusion about early mets diagnosis not improving survival is based on research that is 20+ or 30+ years old or uses data that is 20 or more years old. If that is indeed what the current guidelines are based on, were AIs used when the research data were collected? Or were they used long enough to impact the research data? Is there any more recent research on this topic? How can we base standard of care on something that does not take into account current available treatments?

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    18 months after asking for routine brain scans (I had never had one) due to my her2 status, two large brain tumors were found. They were fortunately able to be removed and pathology showed a low ki67 score. So these were not particularly aggressive or fast growing tumors (thank god).

    I absolutely believe they had been growing for awhile and I am lucky that they were found and removed before they caused me real damage.

    I think it matters for brain mets, spine mets (could leave someone paralyzed), liver mets (if your liver gets too bad you can't get chemo). But mets in general? I'm uncertain about that.

    Elizabeth Edwards had mets that started in her rib and she died just three years later. Holley Kitchen started with just bone mets and I believed died of lung mets. Then there are people on the Stage IV board diagnosed with extensive mets initially and are still here many years later.

    I'm glad I got the brain scan and found the tumors when we did. But I don't regret not spending my time in "remission" in and out of scanners.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2016

    Hi Muska:

    As I recall, in response to a question about post-treatment follow-up, I posted a recent guideline for information only, which included certain follow-up recommendations from ASCO and ACS outside of the metastatic setting. See Recommendation 1.3 and Clinical Interpretation, and references cited therein, regarding use of tumor markers and scans (other than mammography):

    http://jco.ascopubs.org/content/early/2015/12/07/J...

    Muska and others raised good questions about the age of the underlying data (some studies initiated in late 1980's). I posted links to some of the cited support, but that thread and my posts (and work) are gone and inaccessible.

    The use of tumor markers for monitoring in that setting is an area where there are differences in individual practice. Although my management for Stage IA disease is consistent with the guideline (no scans, no tumor marker testing), please note that I have not studied this in any reasonable detail and have no position regarding the merits of this particular recommendation (which is population-based, does not mandate individual treatment, and incorporates multiple considerations), the underlying studies, or the question at hand, which is an important one.

    BarredOwl

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2016

    TectonicShift, how and why do they monitor your bone marrow?

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • funthing42
    funthing42 Member Posts: 418
    edited March 2016

    Hi I'm pretty much crying every hour on the hour.

    I just received a Pet scan due to my tumor markers being up. Results given to me today. They showed a lymph node in axilla region. Totally confusing.

    Started 2009. 40 yrs old See dx below. I had it come back each year there after. Every time I think I'm good it hits me again.

    Crap!!!!!!

    Age 40.

    2009 -Stage 1 0.8 cm estrogen + Progesterone + her 2 -

    Lumpectomy and Rads/ Tamoxifen then Arimadex

    4 years later and 1 negative stereotactic biopsies.

    2014

    It came back in my scar line. 1.0 cm no nodes estrogen + progesterone - slightly her 2 + - nodes . So off with the breast and chemo and Aromasin . One month after chemo it's back.

    2015

    This time in my skin locally So option more Rads in the same area. No reconstruction possible.

    2016

    March elavated Tumor markers so PET SCAN.



    There was a less than 4% it would come back .

    Very sad . Sorry. I need some encouragement. What's worng with me. Lol.

    Now I need to have the lymph node removed pet scan showed no other area whoopie. Hopefully a word auto correct seems confused. Happy

    Any suggestions for surgeons. Places to go people to meet. I've been to Boston ,Sloan and locally her in NJ.

    Help me please cracking up. I feel like my options for survival are zero no matter if I started with a tiny bump or a blazing whopper of a lump.

    I found it all from a fall on a space heater. Regret is setting in.

    Not sure how to approach this.

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  • muska
    muska Member Posts: 1,195
    edited March 2016

    Dear Funthing, I am so sorry to hear about your recurrence. If I understand correctly, earlier recurrences were limited to breast and it's the first time they suspect cancer in lymph nodes. Please try looking at the "positives": lymph node is the only place that lit up on PET scan, correct? I was told or read somewhere that lymph nodes are there for that exact purpose: to catch "bad stuff" before it goes any further. Once they biopsy it they will know better what can be done.

    Please pull your strength together and focus your energy on getting access to the best specialists. In Boston, I would recommend Dana Farber and MGH. If you need names please PM.

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  • McClure77
    McClure77 Member Posts: 55
    edited March 2016

    I've wondered this exact same thing as well. I don't think I get tested for any tumor markers or anything. And the only "routine" scans I will have are mammogram and MRI alternating every 6 months. But given that breast cancer is less likely to come back in your other breast than somewhere else with my diagnosis, why would we only be watching the breasts? I understand that the costs are probably the true factor in whether or not to give us all routine PET scans. However, I also agree that catching a met earlier is logically way better than catching it after it has had a chance to do enough damage to cause symptoms. I think like most of us, I feel frustrated that you're almost just waiting for something to be found again. I tell people it's like being in a relationship with someone who has cheated on you. No matter how hard you try, every time they are late, or don't call, or whatever, your mind leaps to the conclusion that they are cheating on you again. Normally, you'd end up leaving them once the trust is broken because it is SO hard to repair and most couples don't make it through that. Only, we can't leave now, can we? We've only got the one body and we just have to hope this time it stays faithful! ;)


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