Follow-Up; not OK

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    Percy....I don't mind your ranting.  You have a right to rant.  All of us do.  However, I think you are misplacing your anger.  We all want better prevention, screening, treatments, and a cure.  May I suggest that you read Otis Brawley, MD's book, How We Do Harm.  Dr. Brawley is the chief medical officer for The American Cancer Society.  If you don't get his book, check out the YouTube video of him speaking at the annual meeting of professional health writers' association.   He received a standing ovation for his speech which covers the material in the book.  So what got everyone on their feet? He explores the state of our current system of delivery of care and says the system is broken.  We don't need rationing of care. We need "rational" care.  More care does NOT necessarily equate with better care.  Early doesn't mean better either. For us, early might give us more options, but for some, with aggressive disease and aggressive treatment, STILL might not end up being better either.  We can only hope and pray that early means better.....

    Once things quiet down for you, I hope you can ponder these thoughts. Perhaps talk to your team about what I am telling you.  Then, maybe you will feel better and come up with the best plan for you going forward.

    You see, I come from a different place from you because having mammography AND sonograms already having failed me AND others, I don't get relief like others do when they get the "all clear" from their providers.  My husband too, has had MANY times what they call "false negatives" when he has cardiac stress tests.  So, you can give the DH and me as much screening and testing as you like, but that will NEVER convince me that we are receiving BETTER care.

    Please think about what I'm saying.....We need rational care.

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  • jenjenl
    jenjenl Member Posts: 948
    edited July 2014

    Oh man this is like deja vu for me.  I was in the same position, that since i was stage 2, triple negative, very young (33 at dx) and brca1+ I was pissed when my MO wouldn't be offering me annual scans or tumor markers or anything else other than a verbal and light physical review.  Oh man we went rounds that usually ended with me storming out of his office crying like a maniac. I couldn't understand why he wouldn't want to do anything preventative but really all of those tests don't prevent recurrence they just tell you you did and in the end I finally understood that whether I had one spot light up or lit up like a xmas tree the treatment would "probably" be the same.  And then I finished treatment and was so happy that it was over...I decided for a period of time to go with his approach and breast cancer faded from my daily routine.  BUT then I had some issues and I went in for an abdominal scan (to which he ordered a scan immediately which surprised me) and I got false positives and have to wait through a week or 2 of figuring out what it was...it was TERRIFYING! 

    So basically, I love that you are a fighter that you are determined to get what you feel is the right level of preventative care.  Go get it girl...get what you need to feel comfortable.  What I suspect you will need to do will be to switch MO offices.  

    My last comment is try not to let this fight and cancer take over your day to day life to "win" bc you have life so you've won :)

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  • percy4
    percy4 Member Posts: 477
    edited July 2014


    Thanks, jenjenl.  And, thanks, too voraciousre.  I do appreciate all your info and input.  I do get that early detection is no gaurantee, depending on the aggressiveness of the cancer, etc.  I know a lovely woman at the gym who found her BC from her yearly mammo and was Stage IV from the beginning.  Awful.  And I do understand those women often don't like the "early detection" thing.  I can see why. But I do also know that there are many women whose BCs are found through US, when not seen on mammo, and, with dense breasts, I simply want to have the further screening that MAY help me, if there's a next time.  It may not catch everything, but there is a better chance, with my dense breasts, that more can be seen.  Possibly.  I think for me, with them telling me that my density means less than half of BCs can be seen on mammo, that is rational care.

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  • april485
    april485 Member Posts: 3,257
    edited July 2014

    Percy, soon enough the point may be moot although not definitely as some women remain dense throughout the years. As we age, for most of us, our breast density declines. My breasts were dense for a long time and then in 2013, they no longer met the definition for dense anymore. Try hard not to let this stress you out and just keep seeking what you need and sooner or later I am sure you will find what works for you and for your doctors. See below for something that may interest you. Hugs!

    http://health.yahoo.net/experts/dayinhealth/single-greatest-cancer-risk-youve-never-heard

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    Percy..as I mentioned in my first post, you can ask for an external review.  Or you might find a radiologist and MO who will advocate for sonograms until your breasts become less dense or research develops better screening tools.

    I am getting the feeling that you are now understanding that early detection may not mean it insures better choices and better outcomes.  I also am getting the feeling that from our experiences and from the experiences you noted, you are beginning your journey with more knowledge.  By all means inquire more and advocate more until you are comfortable with your future screening and treatment.  But try hard to understand that you might not agree with the Standard of Care, but it is in place to protect you.  Also remember, if you read the NCCN guidelines over the next few years, you will notice both big and small changes in the Standard of Care.  So, as they say...nothing is written in stone.  Hang in there and don't let the medical establishment and insurance companies get you upset.  Direct your energy toward finding a medical provider whom you trust and then let your journey unfold.  Once you find that person and then YOU find the strength to LET GO, then the journey should grow easier.  THAT IS THE HARDEST PART.  Not easy....but one you let go, you will feel stronger and eventually happier.

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  • deb1973
    deb1973 Member Posts: 96
    edited July 2014

    Percy,

    I'm glad you are sticking up for yourself.  Yes, it does suck that more patient-centric protocols aren't already in place, but maybe you can help pave the way to make the road easier for someone else who follows in your footsteps.

    To answer your question, I'm not entirely sure what a lack of calcium receptors means.  That was (I believe) the terminology that Dr. Lagios used when I talked to him during our phone consultation. Basically, my DCIS was ER negative and did not show up on a mammogram the way many are detected as a calcification.  I took it to mean that I didn't have calcifications, but I should probably research that more thoroughly.  

    Anyhow, it annyoys me too when doctors take a "one size fits all approach" to DCIS and think that just because they are following a protocol that might be sufficient for one person's cancer, they are meeting the standard of care.  Good for you for sticking up for yourself.  Do what you need to do to be heard.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    Just a little follow up to what April was saying, I learned on these boards that taking Tamoxifen can actually make your breasts less dense and easier to read. FWIW.

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