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Catching Mets Early? Docs say it doesnt matter?

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The sudden passing of a beloved member of bco raised a question for me.

I keep reading that the oncologists routinely don't scan for mets in breast cancer "survivors"....they say that catching mets "early" doesn't make a difference in survival rates.

So take the case of a recent member ... she starts having pain in her shoulder over a year after treatment...which they assume is SE's from chemo/mastectomy?..(many mastectomy patients deal with frozen shoulder).  Seven months later she's still doing physical therapy and trying to get answers from docs, when she suddenly develops a fever, can't walk, goes to the hospital and finds out she has full blown mets in most her bones and the liver.  (somebody please correct me if I have the info wrong)

So my question is....  had they discovered that her shoulder pain was truly mets from the beginning.....would she still be with us today?  She was too weak to take chemo by the time they found out.  Had they found the mets when she first complained of shoulder pain, she would have been strong enough to have chemo/radiation.    

I know the "survival" rate doesn't change if you find mets early or late...but it could make a difference in adding years to your life, right????  

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Comments

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited March 2012
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    A very, very good question.  I am interested in the input for this issue.

  • greenacres
    greenacres Member Posts: 12
    edited March 2012
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    I totally agree with you here......I think of this every day - what if?  What if I had mets?  What if they could test me now to see if I am at the beginning stages of mets what with all my aches and pains in my neck, back, shoulder?  Yes, it could be arthritis, but it could also be mets.  Yes indeed, a very very good question.  Sandra

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    ...and half the time the treatment  (chemo, tamoxifen, radiation, AI's, mastectomy) ends up giving us various pains that could easily be mets symptoms!  

    I just thought of another example.... I've read coolbreeze's blog.  I recall she didn't even have symptoms when they found her liver mets on accident.   They were found early enough for the docs to try a newer surgery to remove them ~ actually giving her the chance to be NED.  Had coolbreeze waited until she actually had symptoms, they probably would have been too large/numerous to do the surgery??

  • TifJ
    TifJ Member Posts: 804
    edited March 2012
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    Susansgarden- She and I often discussed our frozen shoulders. My onc immediately sent me to an orthopedist for x-rays to rule out mets (but even he said there could be micromets not seen on an X-ray). I never thought about it at the time, but I look back and think why wouldn't some kind of scan be ordered? When I complained of back pain several months later he immediately ordered a bone scan- so why not with shoulder pain?

    I do remember her posting that she had no insurance. I wonder if that contributed to her having a hard time getting in to a doctor- which is totally not acceptable, but probably true. At least an X-ray may have picked up the mets.

    I miss her.

  • TifJ
    TifJ Member Posts: 804
    edited March 2012
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    Susansgarden- She and I often discussed our frozen shoulders. My onc immediately sent me to an orthopedist for x-rays to rule out mets (but even he said there could be micromets not seen on an X-ray). I never thought about it at the time, but I look back and think why wouldn't some kind of scan be ordered? When I complained of back pain several months later he immediately ordered a bone scan- so why not with shoulder pain?

    I do remember her posting that she had no insurance. I wonder if that contributed to her having a hard time getting in to a doctor- which is totally not acceptable, but probably true. At least an X-ray may have picked up the mets.

    I miss her.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    I miss her too.  I was just looking back on the picture forum and she had left a sweet comment on my pic thread just not so long ago.  So surreal.  She was so helpful and positive.  I forgot about her not having insurance. :(

  • alesta29
    alesta29 Member Posts: 240
    edited March 2012
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    I think this is an interesting one. I was diagnosed last June, stage IV out of the box after routine screening age 49. I have mets to lung, liver, axilla and multiple bone mets. I had no symptoms and no breast lump that anyone could feel. (Less than 1cm on scan and buried deep).

    I sometimes wonder what would have happened if I hadn't have had that scan. Would I still be merrily going about my business or would it have impacted on my health?

    I think it's easier to deal with a few scattered small mets to my liver than it is to deal with multiple large ones - that's commonsense right?

    My onc did tell me that when I had the choice of chemo (EC x6 or FEC x3 and TAX x3) that it didn't really matter as it wouldn't affect overall survival - so having gentle (EC) Vs more aggressive (FEC / TAX) didn't really matter. It just meant that the second option would shrink them faster (except if didn't - sigh)

    Back to the river of D'Nile for me...

  • pip57
    pip57 Member Posts: 7,080
    edited March 2012
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    But then we hear of BC sisters who have clear scans and then 2 months later are full of mets.  

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    alesta29 ~ That's what I wonder too.... would I rather not know and go happily on my way?   So if aggressive vs. gentle chemo doesn't matter once mets show up... you live longer but feel crummy? I'm sorry you presented with Stage IV.  BC really is such a crap shoot.
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited March 2012
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    My bone met was asymptomatic and discovered by accident. I was treated ASAP but often wonder what my situation might be if it was found after I had symptoms.

    Caryn

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2012
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    OMG, of course it matters! Finding it early can mean many more years of life. Life, I'll take it over death every time. The callousness of some doctors is mind-boggling!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    Does your doc do routine scans without symptoms,  yorkiemom?
  • cheryl1946
    cheryl1946 Member Posts: 62
    edited March 2012
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    I think it just depends on your onc;some just say it's se's from treatment,while others test for mets.

    I was having thigh pain and my onc sent me for an xray to see if it was mets-it wasn't. It was muscle pain,I guess from the letrozole and zometa. 

    Every month when I go in for zometa,she examines me;runs her fist along my spine,presses all over my abdomen,etc. Plus,she always asks if I have aches,pains,etc.

    Okay,maybe survival rates don't improve,but I believe length of survibal does if mets are found early.

    My mets have been there for years,but are only in the bones so far.

    Not having insurance is a big problem for getting a doctor,nevermind having scans. In Massachusetts it's a law that you must have health insurance.

  • madpeacock
    madpeacock Member Posts: 216
    edited March 2012
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    And I just finished reading another thread about family/friends thinking early stage DX is "easy" and "you're over it", "cured", etc, etc. How does one explain feeling those aches and pains and wondering if something else is going on rather than your aging process, SEs from various treatments, or just plain stress? I've always been very strong and healthy and had the "easy" DX. In the last couple of months, though, I have a constant pain in the area of the liver and ribs on the right - opposite side - as well as strange pain in my shoulder that I never had before. What's this? Most likely it is dealing with my large, rambunctious puppy who "loves" me to death - or at least to bruising. I just passed seven months post DX, so it is still foremost in my mind, needless to say. 

  • scuttlers
    scuttlers Member Posts: 149
    edited March 2012
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    Finding mets earlier rather than later does make a HUGE difference. Mine was found by "accident". Absolutely no symptoms. This is a concern for earlier Stages. And I don't think it is standard to screen routinely for those earlier Stages who have "finished" treatment. I asked for a scan so I could feel comfortable with moving on with reconstruction. My onc understood and ordered it. And he was shocked that it came back with progression.



    Routine scans are normal now that I have metastatic cancer. They check often to make sure current treatments are continuing to work. It is standard to routinely screen those with Stage IV or metastasis.



    But for those at lower Stages, it is not the standard to screen routinely. Even with insurance it can be difficult to get routine scans approved. So they wait for symptoms. In Mary's case, her onc dropped the ball (in my opinion).

  • wren44
    wren44 Member Posts: 7,881
    edited March 2012
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    I've wondered about this also. I'm early stage and no other part of my body has been looked at. I'm not sure I'm comfortable without so much as a chest x-ray. I'm going to discuss it with my primary care physician since my onc is only interested in my (missing) breast.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    Thanks for joining in the conversation everyone.  It is interesting how different care can be depending on the doctor.   Cheryl1946 ~ that's what I'm thinking too... survival doesn't increase, but length of life does.  And treatment for mets doesn't necessarily have to be that aggressive, correct?  i.e... you could be taking hormonals for mets and feel "fine"?

    madpeacock ~ I go back and forth with..."BC was no big deal...I caught it early, had a mastectomy, doing 5 years of tamoxifen..then I'm movin' on!" ............ then something pops up and I think..."I had CANCER.  That is a big deal.  Life insurance sure thinks so!"   But what are ya gonna do?  Live in fear with every ache and pain?  I certainly don't want to.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    scuttlers ~ Wow...why did you insist on the scans?  Did your insurance fight you? I guess that's not a case where you are glad you get to say "I told you so" to your onc!  I like your signature line. Smile
  • pip57
    pip57 Member Posts: 7,080
    edited March 2012
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    Here is how it was explained to me.

    Treating mets is entirely different than treating the original tumour.  It is a different beast.  If you hit small mets early, yes it could be very effective.  However, it is more common for the cells to become immune to the tx and future cells that grow later will be less treatable. Basically, they want to save the big guns for when mets are causing symptoms or impairing health.  

    I believe it depends on your staging too.  If you are stage III they are more likely to wait for symptoms.  Of course, there is now concern that the scans themselves are waking up those little cells floating around.  This disease really is very complex and a one size treatment for all will never be the answer. 

    Edited to add that whenever I present with concerns or symptoms, I am always given the option of testing for mets.  However, I live in Canada and insurance companies do not dictate when tests are necessary...my doctor and I do. 

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2012
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    I had a bone and CT scan about one month after surgery. Although scans said NED,  I'm due for a follow-up CT next week. Then I don't know how routine the scans will be. One thing about having positive nodes is that you get looked at a lot more. I do believe if I asked my onc to check into symptoms she would scan me, but don't know that for sure. I would definitely be p.o'd if she didn't, especially if I were really concerned.

    I guess what angered me was the horrifying assumption by some docs that it doesn't matter whether mets are found early or when it's too late! If I ever got mets I would want to live as long as possible with them. One reason is that a cure may be on the horizon.  

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    It sounds like the docs base alot of it on benefit vs. costs?  Similiar to MRI being used for screenings.  We might catch more BC if everyone had a yearly MRI ...but not ENOUGH to make it worth the cost.  

    Maybe that's the same with scanning for mets?  We might catch some early mets by scanning everyone with BC....but not ENOUGH people to make it worth the costs of scanning.  

  • pip57
    pip57 Member Posts: 7,080
    edited March 2012
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    But if we know that we can't 'cure' mets because there will always be those rogue cells circulating, why would you want to make the ones left behind resistant to any further treatment before they are causing symptoms?  And keep in mind, that there are no scans or tests available that can 'see' micro mets. Many of us have them and they are just undetected and not causing health issues right now.  There is also the concern about exposure to so many scans are actually creating more problems.

  • lago
    lago Member Posts: 11,653
    edited March 2012
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    Susan that is exactly what the oncs mean. Once you have mets the likelihood of surviving them is very remote but… treating the mets before they get out of control will extend your life. I agree it is a shame what happened to our bc.org sister. She had been complaining for months.

    At the same time many of us who do not have mets (especially after 5 years) will not get them. We think it's happens more often than it does. 

    I know I have said this before but many people with high blood pressure or heart disease dodn't go around everyday thinking they need testing because they are going to have a stroke or heart attack.They are enjoying their lives.

    I will admit that I have a high tolerance to pain. A little ache will be easily missed (or dismissed) by me. I'm trying to be a bit more aware just in case but so far it's just stiff muscles and joints from the estrogen sucking drug. I'm looking forward to the 3 & 5 year NED mark. 2 years coming up August 31st.

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2012
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    Susan, I believe MBJ's situation (which I think is the one to which you're referring) was complicated by the fact that she didn't have health insurance and may have been waiting for whatever uninsured program she could get into after her move from CA to KY.  (I'm assuming this because she didn't have insurance in CA, and was a wonderful resource for someone I knew who found herself in the same situation when she was dx'd a week after her Cobra coverage expired.)

    The way I understand future screening is that scanning without a specific symptom can cause all sorts of unnecessary worries and biopsies.  And for early stage bc, the odds are so in our favor that we're not going to have a "secret" recurrence, although, of course, that can happen, and is always especially shocking when it does, constant screening just doesn't make sense.  OTOH, my BS expects me to report any pain that hasn't gone away within 3 weeks, so that she can check it out.  And that's where I think MBJ slipped through the cracks -- by not having health insurance and a BS or onc who knew her and who would have taken her shoulder pain seriously. That's what's so disturbing to me about her situation -- that a lack of insurance put her behind in regular followup care, especially for someone who had TNBC.      Deanna

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    Good article, lago.  Though I'm one of those ER+ cases that tend to get no "benefit" from the 5 year mark...more likely to recur later.  So I suppose I should really live it up these next four years! Tongue out

    I honestly am not fretting about it...mostly just curious/fascinated by this whole BC thing.  I've read the History of Cancer, Bathsheba's Breast, etc....seems like the more we know... the more we find out we don't know.

  • Nel
    Nel Member Posts: 597
    edited March 2012
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    Hi All,

    Great topic.  I am about 6 months out from DX and still in treatment, but looking to the end. When I saw my Onc last week I asked for scans every day.  LOL.  We joked,but right now that is where my head is.  I think while we are in active treatment it is difficult in some ways and easier in others.  At least for me.  I keep worrying about the wayward cell that escaped my initial round of chemo.  I will be interested to follow this topic. 

    Gentle day

    Nel 

  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2012
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    hillck and dlb823 ~ I wonder if Mary was able to get diagnosed with mets earlier...would she have been able to get chemo being uninsured? I know chemo isn't cheap. I know the healthcare debate is a hot issue... but it does seem inhumane to not have access to standard medical care if you are not in a position to be able to afford it.

  • lrr4993
    lrr4993 Member Posts: 504
    edited March 2012
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    This is an interesting question.  I am no expert, but here is how I view it:

    * In the great majority of cases, finding mets early does not improve survival.

    * In some cases, finding mets early will improve LENGTH of survival.

    * In some cases, finding mets early will not improve length of survival (i.e. chemo resistant mets), but you have more time left before death.

    My onco also takes the "no scans unless you have symptoms" approach.  A part of me likes this as I do not know if I could handle the stress of routine scans.  My prechemo PET just about caused a nervous breakdown.  That said, if my days are limited, I sort of want to know so I can get to my bucket list.  I would hate to spend my time working every day and going through the motions, just to find out I have advanced mets once symptoms show up, at which point I am too sick and have too little time left to enjoy the life I have left.  I am debating asking for a scan or having some symptoms so one is ordered in the next year for this very reason. 

  • TifJ
    TifJ Member Posts: 804
    edited March 2012
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    I totally agree with Susansgarden that BC is a crapshoot. It can affect each of us differently even if we have the same diagnosis. Insurance is just another hinderance to having BC. I was denied a PET between surgery and chemo because I am Stage 1. Even with a plea from my onc, insurance still said no. I think it sucks that my life may depend on what my insurance company says is right for me! I think if the doctor orders it- it should happen!

    I am 15 months PFC and still have lots of aches and pains so I, of course, worry about mets. I think an occasional scan would give me peace of mind, but are frequent scans good for me? It all just makes me want to scream!!

  • pip57
    pip57 Member Posts: 7,080
    edited March 2012
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    The fact that she did have symptoms and didn't get checked out is horrible.  That is completely different from discussing  getting routinely scanned without having any symptoms being beneficial.