bone scans before pain of bone mets

jeancmici
jeancmici Member Posts: 665 Member
edited March 2014 in Breast Cancer #1
http://www.curetoday.com/currentissue/departments/facingchallenge/index.html

This is the article in the current CURE magazinr and after reading it I am angry all over again with the surgeon, oncologists, and myself. The last sentence says we must be our own advocate.

Damn! that is so annoying and maddening. The specialists should be looking out for our best interests instead of all of us having to do the homework along with being sick, worried, and often unknowing of a lot of things that the god-doctors know but wait for us to holler.

I am not a complainer and really had no idea how serious HER2neu is so having had osteoarthritis for years just did not pay close enuf attention to back discomfort. Add the fact that I do not have a pain threshold low like some people who pop a pill at the slightest twinge, I had a grand case of bone mets before *I* hollered - and even the first time I mentioned what seemed like more pain, it was not really listened to.

Why am i mad at myself? Well, why did I not even consider bone mets when I had bone pain - why did I think it was the vacuuming or awkward movement mot remembered that was causing it. How DUMB can one get????? Me, who had a medical library of books long before computers were common and drug books with pictures and side effects - the whole scoop. I was so informed but so dumb when this was going on.

Forgive me for ranting on - getting it off my chest to whoever will read this.

How many of you had bone scans at the time of diagnosis or after treatment was completed? How I wish I were in that group!

Appreciate any responses - maybe it does not pay to go to a comprehensive cancer institute affiliated with the NCI as I did.

My thoughts and prayers are with all of us in this BIG boat.
Jean

Comments

  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    This is my point exactly Jean, we have to be our own advocates because NO ONE ELSE is doing it! I had a bone scan at diagnosis because I asked for one. A year later I had muscle pain in my right shoulder, thought I had strained my rotator cuff. Fortunately, for me, I had also requested routine CEA testing. CEA started rising same time shoulder hurt, doc ordered mammo/CT of lung and abdomen. I called back and asked for a bone scan, they said no, you don't have bone pain. I said tell him I'm ADAMENT I want a bone scan. Got it and there it was, a tumor in my right arm! My saving grace was knowing breast cancer metastasizes to BBLL brain, bone, liver and lung. What do people do who don't have a medical background?
    It's the pitts! It really ticks me off!
    More to come, gotta go right now. God bless you sweetie, luv hummer.
  • jake10
    jake10 Member Posts: 202
    Jean, be kinder to yourself. Why didn't the doctors ask if you had any bone pain? With positive Her2 you would think they would do a full assessment.
    I blame doctors seeing too many patients per day. And we all know this is because of the costs of running a practice grows by leaps and bounds each year. With new and increasingly burdensom regulations and liability coverage and all.......I don't know the solution.
    I am a nurse and I would not have asked for the bone scan at diagnosis or at the end of therapy. God, I had never heard of HER2 until I got to this site. No one even mentioned my status. So I got a copy of my pathology to assure it had been tested and the results had been negative. Thank God they were.
    God Bless You, Beth
  • jeancmici
    jeancmici Member Posts: 665 Member
    jake10 said:

    Jean, be kinder to yourself. Why didn't the doctors ask if you had any bone pain? With positive Her2 you would think they would do a full assessment.
    I blame doctors seeing too many patients per day. And we all know this is because of the costs of running a practice grows by leaps and bounds each year. With new and increasingly burdensom regulations and liability coverage and all.......I don't know the solution.
    I am a nurse and I would not have asked for the bone scan at diagnosis or at the end of therapy. God, I had never heard of HER2 until I got to this site. No one even mentioned my status. So I got a copy of my pathology to assure it had been tested and the results had been negative. Thank God they were.
    God Bless You, Beth

    >>Jean, be kinder to yourself.

    Thanks Beth!

    I did ask about a bone scan just for check-up in Oct 2002 and was refused because of no pain (should have lied)- there again I was remiss in not going to my primary doctor and asking and she would have done so.

    What if - if - if - yes, could drive myself nuts. You know I feel so mean that I will stay with this oncologist just so he can be reminded every time he sees me which is every appt. now of HIS slip-ups!!! He did say the last time that he hoped I would some day again trust him!

    And no overhead costs for him - he works for the hospital - on salary - actually I seldom saw him - only nurse practitioner who thought she knew everything. but i agree, he is too busy - too many scheduled patients.

    Later he said ( after she was gone and I had complained about the bone scan refusal as I sat with major mets confirmed ) well, Sharon did have a tendency to be glib! Can you imagine - I wonder if she was asked to leave?

    I had resigned myself to just dealing with what is now - until I read the CURE article - then got all emotional and angry AGAIN!

    Thanks again - to you and hummer for your responses.

    Jean
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    jeancmici said:

    >>Jean, be kinder to yourself.

    Thanks Beth!

    I did ask about a bone scan just for check-up in Oct 2002 and was refused because of no pain (should have lied)- there again I was remiss in not going to my primary doctor and asking and she would have done so.

    What if - if - if - yes, could drive myself nuts. You know I feel so mean that I will stay with this oncologist just so he can be reminded every time he sees me which is every appt. now of HIS slip-ups!!! He did say the last time that he hoped I would some day again trust him!

    And no overhead costs for him - he works for the hospital - on salary - actually I seldom saw him - only nurse practitioner who thought she knew everything. but i agree, he is too busy - too many scheduled patients.

    Later he said ( after she was gone and I had complained about the bone scan refusal as I sat with major mets confirmed ) well, Sharon did have a tendency to be glib! Can you imagine - I wonder if she was asked to leave?

    I had resigned myself to just dealing with what is now - until I read the CURE article - then got all emotional and angry AGAIN!

    Thanks again - to you and hummer for your responses.

    Jean

    Jean, dear, you can't change the past. What happens sucks, but girl you got to get rid of that anger! Wrath is mine saith the Lord. Let go and let God take care of it. One thing I do know, anger will eat you up on the inside. People make mistakes, we make mistakes, focus on getting well first THEN use your knowledge to help others DEFEAT CANCER!
    The power of prayer, this all happened for a reason, make it a positive one, from the GITGO.
    luv you, hummer
  • 24242
    24242 Member Posts: 1,398
    I guess this is why I still hang here. I for one don't think much of the CURE when risk factors are so much higher for the same cancer as well as others. How many women actually know what cancers they are at risk for next after one kind? My experience is that most women more intent on the cure than being their own advicates. If the doctor says they are cured and cancer free that is enough and the end for most. I have seen far too many women with bone cancer now because they had a false sense of security, I for one am not one of those. I had no chance for early detection due to short sightedness of specialist, thinking I was too young, too healthy and too well built for my lump to be cancerous. Now I take what they say with a grain of salt. I have had to watch my family believe the doctors are all knowing while our mother is suffering at the end of her life. Finally doctors listened and finally got the methadone needle form out instead of all the pills she was trying to keep down. Inform yourselves and you be able to help yourself more than you would ever think. Jean I understand your anger but that will only eat you alive not helping you keep your energy for your fight at hand. You are close at heart and in my thoughts.
    Be good to yourself and don't be hard on yourself it is about what you have control over and what you don't. Doctors seem to be the ones with all the control.
    Tara
  • blossomtime
    blossomtime Member Posts: 98
    My heart goes out to you, what you are going through is our worst fears come true. I had a bone scan before the start of chemo only because my liver function tests elevated after surgery. At that time they decided they should do full workup, bone scan, abd ct,etc. This was even after knowing I had 6 positive nodes and am her 2 pos, 3+. But since they have been very vigilant. I have had another bone scan a brain ct and an MRI. I am 18 months out from diagnosis. But I feel that with this disease I will never stop worrying. That 5 yr mark is a nothing more than a 5 yr date. It might be 1yr,2,5,10,15 or never. One just doesnt know so I am trying to move on with living every day. I bought a house while finishing treatment and take great joy in making improvements. I understand the guilt feeling. When I was diagnosed I was 4 months late on my mammogram, ironically the first time I have ever been late and was never very good about self exams. My tumor was 4.2x4.5 cm. Boy did I beat myself up over that for a long time. But I had to move on, whats done is done. Even though I can understand your anger at your drs, try to move on for your own well being. We are here for you to vent. I will keep you in my prayers. Sharon
  • inkblot
    inkblot Member Posts: 698 Member
    Hi Jean:

    Sorry you've been going through an angry period.
    Sometimes though, just giving the anger expression is purging. No sense in pretending it doesn't exist when you're in the throes of it.

    As you know, I too was strongly Her/2neu but want to remind you that there is no standardized test for Her2. You can get different numbers at different laboratories. Too, we have to realize that Her2 was around during our Grandmother's time...scientists just weren't aware of it and had no way of recognizing it. Many women, even today, are not tested for it. I had my own tests repeated at different facility and still came up with a 3+. Do I trust that 100%? Of course not.
    Yet I don't dwell on it. We still have ordinary aches and pains. Pulled muscles can take weeks to heal well. Arthritis still plagues people. Tendonitis still besets people as does the flu and other maladies. It isn't easy after having had cancer to figure out when we need to have some speicalized testing done. We can only listen to our bodies, which we know better than anyone else ever will, and follow our instincts.
    Which is what you did. Doctor's don't have a crystal ball either. Yet if they don't order tests when you intuitively know that you need one, then it's time to bid that doctor goodbye. We cannot advocate for ourselves if our doctor's don't truly listen to us, since we don't have the authority to write a script for a test or drug.
    So, try to lighten up on blaming yourself Jean.

    Following my dx, I had a big go with anger. During that time, I blamed everything I could think of and then some. I was on a tear about it big time! I just had to let it go and sling left and right and get it out I suppose. I didn't feel ashamed about feeling angry either. I surmised that I had the right. It dissipated, as I recall, after about a week of rolling round in it. Just something I had to go through I guess.

    The best we can do is decide how we're going to manage what we truly can manage, adopt an attitude which serves us well and go with it. Full speed ahead. I'm with you on the no looking back and no backtracking. Forward is the only way to go.

    Self blame or system blame doesn't net us much. We CAN choose to "fire" our docs though when they are not providing the level of care we need and deserve.

    Factually, women who are strongly Her2/neu positive and those who are negative, both get mets/recurrences. I've yet to see anything supporting that Her2/neu women get mets, recurrences any sooner or more often than non-Her/2neu women. There's no rhyme or reason. For what it's worth, my doctor says that doing "routine" scans, MRI's, etc. doesn't really help them to find mets any sooner. Typically, a "search" is based upon patient pain and/or complaints. Otherwise, one could have a bone scan and be told everything is fine, only to have a metastasis ongoing in the lung, liver or elsewhere. My doctor as well as the doctor's of some friends with bc, say that neither tumor marker tests, scans or anything else really helps them find a met any sooner than they typically find it on symptomology. The nature of cancer is one big grey area as best anyone can seem to determine. And as difficult as the drugs are to take, as arduous as radiation can be, it's the only thing we've got available and we must be grateful for it. We have to make our choices and carry on, hoping for the best. As for advocacy...well, ACS is a self proclaimed advocate, as are so many other organizations. All of them, however, can only provide info to us that already exists. As for the money...All that fund raising has to end up somewhere and so it goes into research, programs for those diagnosed, undergoing treatment, etc.. Some of it, of course, also goes to salaries as well as to policical lobbying efforts, etc.. Cancer is a multi billion dollar business and although we don't like that fact much, we have to accept that this is part of the equation. Without the "fringes" and profitability, research would come to a screeching halt. No one would be exploring anything new, innovative or promising. It's a big wheel and those of us with cancer are just one spoke in it. The quality of our lives only matter in the aggregate to researchers, drug manufacturer's, politician's and on a certain level, even to our personal physician's. They all expound "stats", which we all know are meaningless when applied to any individual. Just makes it even more important that we take the initiative and DEMAND when we need to, if that's what's required to get the medical attention/treatments we need.

    A real "cure" is probably out there, somewhere, but in the meantime, we must focus upon prevention as much as possible and take the best care we can of ourselves and those we love. Share info about health hazards in our food, air and water, clothing, cosmetics, OTC drugs, household fabrics, factories and farms and thereby, hope to keep ourselves informed, so that we can take steps to avoid all that we logically can, in order to try to stay healthier.

    I'm so happy that you're feeling better! That's what really counts in the right here, right now scheme of things. A day with less pain, a day with more joy, a greater sense of spirit and knowing that we can share it all with not only our loved one's and friends, but here, with our sisters.

    Hang in and trust me, "venting" is good!

    Love, light and laughter,
    Ink