east coast doctors

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  • Momine
    Momine Member Posts: 7,859
    edited October 2013


    Roses, thanks for posting that. Food for thought.

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    the 1990 s were long time ago. things have changed a lot. was it just the one stufy? people live a lot longer in stage 4 now. i just dont buy into there thinking. i have seen lower stages get more surveillance than me. and our reccurrance rates are so much higher.

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited October 2013


    The 90's were a long time ago and thank God we have the treatments we have now. And I hope when my daughter is my age, if she or someone she knows has to fight this same fight, I hope to God they'll be able to be thankful treatments are that much improved from what we have in 2013.


    For what it's worth, the guidelines are backed by 3 articles, the most recent one from 2006. But the ASCO (it was an ASCO guideline study that they reference from 2006) continues to assess the guidelines based on studies and they stood by the recommendation as recently as last March ( http://www.asco.org/institute-quality/breast-cancer-follow-and-management-after-primary-treatment-american-society ).

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    Well, I think my QOL would suffer if I found out I had mets that were not fully treatable due to their waiting for symptoms. I also feel that women in lower stages, two examples where I work, are getting more surveillance than me. They were Stage 0 but since one has one breast remaining and the other two, they get MRIs. And I was told by my Onc that I would not qualify for an MRI on my "good" breast. What gives? I don't know.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2013


    Roses, yes, I also noted the recent updating etc. It is quite interesting. I also noted that they keep emphasizing the importance of a careful history at each visit. This sounds wise. Sometimes docs get a little too jiggy with the scans and forget about basic doctoring, like feeling up the liver and asking about bowel health.


    One thing, though, still sort of puzzles me. These guide lines appear to be for follow-up of ALL "early stage" cancers, so basically everything from 0-3C. It would seem to me that the wisdom and usefulness of blood panels, scans or ultrasounds would vary some depending on stage. I dunno. Maybe I will see if my doc has anything intelligent to say about it, since I am seeing him next week.

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    momine does yours palpate the liver?

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  • Momine
    Momine Member Posts: 7,859
    edited October 2013


    Fred, yes, and it feels really weird. Greek docs tend to be fairly hands on, literally. It is quite a different medical culture, for better and also for worse in some contexts ( still common to lie to cancer patients, for example).

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  • kar123
    kar123 Member Posts: 273
    edited October 2013


    I have heard that the no scans unless symptoms is because whether mets is found sooner or later it will either respond to treatments or it won't. Meaning if you have one small bone spot or many large bone spots the treatment will take care of them the same. My thing is, if it jumps to organs or the brain does that rule still ring true? I don't know and I haven't the courage to ask my onc. She does do blood work, but I haven't asked her what it's for. Sometimes I enjoy being in the dark.

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  • Kat-ski
    Kat-ski Member Posts: 212
    edited October 2013


    I want a total complete blood work panel done. Anyone know a good lab? Michigan seems to use the same one. I just want to know where I stand with my health. Thanks. Kat

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    Momine--you hit the nail right on the head. This protocol or standard of care is being applied to all of us, whether Stage 0 or IIIc, here in the U.S. It makes no sense that those who had lymph node involvement should be treated the same. No sense to me whatsoever.

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    https://twitter.com/healthyliving/status/388708130248749056


    Look at this tweet and it will take you to a link on Huffington Post saying that a blood test for cancer is on the market. Also some reactions with the "don't know if anyone would do better if they knew earlier." I simply don't understand why the patient's feelings would not be taken into account. Unbelievable.

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    And here's the order form. Can't find anything about the price. Am going to fill it out and see what response I get.


    http://www.cynvenio.com/order-clearid.php

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    let me know what you find mary.

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  • peacestrength
    peacestrength Member Posts: 690
    edited October 2013


    Very interesting, Mary. Thanks for the info.

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  • lexie5
    lexie5 Member Posts: 32
    edited October 2013
    ClearID is $1500 per test. Currently insurance does not cover. I'm waiting for my packet to arrive.  Correction: I just got a call from ClearID and they are combining the 2 tests so the price will be different.  Sorry about posting in the stage 3 area.  I was just searching for info on ClearID and didn't notice.
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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    found something interesting today.


    while waiting to pick up films, my hosp was advertising low dose ct scans yearly for high risk lung cancer pts.


    this is people that dont even have cancer. they can get scans. then i have taken care of several pts with other type cancers that get yearly pet scans


    maybe we should complain to the medical board that makes these guidelines

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2013


    All I can do is groan.

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013


    i am going to big time complain tommy MO s. this is so not fair

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013

    i know these docs are getting kickbacks from insurance companies.

    i just got back from texas for my scans and TM

    wasnt good. small amout of bone mets.

    if your doc wont do theses texts, just lie and make up symptoms.  if i had waited my mets would have been bigger

    i also had no idea there was such tests as caris report and CTC.

    looks like i will be filing complaint with medical board again.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited October 2013


    Fran....I am sorry to hear this, my thoughts and prayers are with you sweetie.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2013


    Fran, I saw your bad news on another thread and I am very sorry. I am glad you took action.

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  • Karina121293
    Karina121293 Member Posts: 370
    edited October 2013

    Fran, I am sorry for the news. Prayers coming your way. Hope you beat this hated disease again and be there for your kids for many many years. Good luck with the treatment and stay hopeful sister.

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  • Mgster
    Mgster Member Posts: 91
    edited October 2013


    East Coaster here also and I have awesome doctors...both breast and plastic surgeons.

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  • peacestrength
    peacestrength Member Posts: 690
    edited October 2013

    Fran - I'm sorry and many prayers to you.  

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited October 2013

    Fran my prayers are with you. Try to focus on treatment and getting well. Hugs

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  • hopefour
    hopefour Member Posts: 459
    edited October 2013


    Fran...I am so sorry, but you have such spunk you'll be NED soon again! I remember Dr. Block telling me many live long lives with bone mets and MD Anderson just told me a few weeks ago that many live beyond 10 years with bone mets. Please stay with us and keep us posted on how you're doing..we all care!

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013

    i sure as hell hope i am here in ten years!

    i am going to be writing letters to medical board ,govener etc. i shouldnt have to travel to texas for scans and TM and tx.

    this is ridiculas

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  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited October 2013


    Fran


    What is your treatment plan? I'm glad you posted and hope you'll cont to let us know how you are feeling


    Elizabeth

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I think the scans are something important so that if there is progression it is found out and also the extent of the progression.

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2013

    they call my first part fumap. not exactly sure how it is. m is mititocin

    as soon as my caris report is back  he will give me drugs that target. i think i will get herceptin, as he told me i was her positive. guess he looked at my slides. 

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