Almost A Year Has Past, Still Can't Work

dorothyt
dorothyt Member Posts: 103
edited March 2014 in Breast Cancer #1
On June 8, it will be a year since I worked. I was working two jobs. A high school substitute teacher since 2000, an a Personal Care Assitance since 2005. I miss not being at school, sometimes it was very stressful, but that comes with dealing with teenagers. I also miss not being to see to my patient. My major problem is my joint pains. That is why I do not post to much because my arms right shoulder is giving me problems. Than there is the sleepless nights, the confusion the muscle pain the hot flashes, anxiety, depression, dizziness.... And I also found out that I have something on my liver and the second CT scan shows no change, My ONC did not feel a need to tell me. Should a doctor hold information from their patient???

Comments

  • tgf
    tgf Member Posts: 950 Member
    #2
    Dorothy
    No ... a doctor should NOT withold information from their patient. It's your body and it's his job to tell you what's going on.

    I'm sorry you are still not feeling well enough to go back to work. You really need to talk to your doctor about all of these "side-effects" ... but if you are uncomfortable with the care he is/is not giving you .. it's time to change doctors.

    Take care ... and good luck. Let us know how things are going.

    hugs.
    teena
  • chenheart
    chenheart Member Posts: 5,159
    #3
    Bless your heart!
    I agree that it is your body, and as not "just" a patient, but a paying client, heck yeah you have a right to know the results of any tests! We are indeed our own best advocates, but by the same token unless we are medical professionals ourselves, how in the world do we always know just what questions to ask???? If no info is forthcoming from our physicians, what are we supposed to think? I suppose, to be on the safe side, when we have labs drawn, or any other tests, it is incumbant upon us to blanketly ask that ALL of the test results be given to us, no matter how mundane they may seem to be to our physicians.

    I also suggest you talk to your Dr about the lingering side affects, and what can be done to help you so that you can get on with your life in a meaningful, less pain-filled way. I know that the neuropathy I experienced gradually did leave, and though I have sensitivity still at the surgery site, it does not limit my activity. Perhaps you are in need of pain-management, or at the very least better coping skills. By that I mean you perhaps can be taught how to best find relief, be it meds, excercises, mind -over-matter, SOMETHING to help you be the vital woman we know you are!

    Keep us in the loop~ we care about you, Sister-Warrior-Survivor!

    Hugs,
    Claudia
  • zahalene
    zahalene Member Posts: 670
    #4
    There ought to be a law...
    During the last few months of my mother's life she struggled with several different medical issues and had 3 to 5 doctors dealing with her most of the time. She was diagnosed with senile dementia and NONE of the family was told. I found it out by accident when I was passing some written reports from one doctor to another. There was nothing to be done about it, medically speaking, but it sure would have made a difference in how the family coped with the way she was there at the last. None of us thought to ask about a specific mental diagnosis, supposing that her difficult mental state was the result of the many meds she was taking or the mental stress of her condition. We all felt so guilty because we couldn't make her feel better about things. Who knew that her mental capacities were not CAPABLE of raising her above it all, regardless of how hard we tried! There should be a full-disclosure law.
  • tasha_111
    tasha_111 Member Posts: 2,072
    #5
    zahalene said:

    There ought to be a law...
    During the last few months of my mother's life she struggled with several different medical issues and had 3 to 5 doctors dealing with her most of the time. She was diagnosed with senile dementia and NONE of the family was told. I found it out by accident when I was passing some written reports from one doctor to another. There was nothing to be done about it, medically speaking, but it sure would have made a difference in how the family coped with the way she was there at the last. None of us thought to ask about a specific mental diagnosis, supposing that her difficult mental state was the result of the many meds she was taking or the mental stress of her condition. We all felt so guilty because we couldn't make her feel better about things. Who knew that her mental capacities were not CAPABLE of raising her above it all, regardless of how hard we tried! There should be a full-disclosure law.

    Dreadful!
    Isn't it amazing that they feel they can tell you just what they think you need to know! If it hadn't been for my Peer Support worker on the phone once a fortnight...I would have thought that I was going completely mad. She explained to me about chemo brain, thank god she did, I was just about to sign out as having altzheimers..I knew I couldn't live with that! Good Luck Hun...Don't let the sods grind you down. Hugs J xxxxxxxx
  • seof
    seof Member Posts: 819 Member
    #6
    I agree that your Dr. should
    I agree that your Dr. should tell you what is going on, even if it is nothing, it beats finding out later! I also agree that you should ask about the side effects and see if anything can be done to improve your quality of life. If you are not happy about the communication between you and the Dr., it may be time to change Drs. to find one you can deal with.

    I hope things get better soon. seof
  • Jan_M
    Jan_M Member Posts: 116
    #7
    seof said:

    I agree that your Dr. should
    I agree that your Dr. should tell you what is going on, even if it is nothing, it beats finding out later! I also agree that you should ask about the side effects and see if anything can be done to improve your quality of life. If you are not happy about the communication between you and the Dr., it may be time to change Drs. to find one you can deal with.

    I hope things get better soon. seof

    I think if Drs. told us all
    I think if Drs. told us all the side effects we would get from treatment, few would go for treatment. But I do not think they have a right to withhold information from us about our bodies.

    I found out better information on these boards than I did from the Dr.

    I hope you feel better soon.
  • djteach
    djteach Member Posts: 273
    #8
    Hi Dorothy,
    I'm kind of new
    Hi Dorothy,
    I'm kind of new here, but not new to cancer. I was diagnosed with stage IV b/c with mets to the vertebra. The damage to my back was so severe that I will never be able to work again. I so sorry that you are having so much pain. Your onc had no right to withhold information from you for any reason, unless you told him to do so, and that doesn't sound like you.

    Maybe it's time for a second opinion? only you can make that decision. I wish you painless days and sleep filled nights. Know that you are in my thoughts and prayers.

    Love and Gentle Hugs,
    Donna
  • dorothyt
    dorothyt Member Posts: 103
    #9
    djteach said:

    Hi Dorothy,
    I'm kind of new
    Hi Dorothy,
    I'm kind of new here, but not new to cancer. I was diagnosed with stage IV b/c with mets to the vertebra. The damage to my back was so severe that I will never be able to work again. I so sorry that you are having so much pain. Your onc had no right to withhold information from you for any reason, unless you told him to do so, and that doesn't sound like you.

    Maybe it's time for a second opinion? only you can make that decision. I wish you painless days and sleep filled nights. Know that you are in my thoughts and prayers.

    Love and Gentle Hugs,
    Donna

    Thank's everyone, I have an
    Thank's everyone, I have an appointment in June to see my ONC. I will ask her why she did not tell me. I live in a rural area, I'm about 50 miles from the doctors that I'm seeing now so it is not easy to change doctors. May God Bless You All.
  • rjjj
    rjjj Member Posts: 1,822 Member
    #10
    dorothyt said:

    Thank's everyone, I have an
    Thank's everyone, I have an appointment in June to see my ONC. I will ask her why she did not tell me. I live in a rural area, I'm about 50 miles from the doctors that I'm seeing now so it is not easy to change doctors. May God Bless You All.

    dorothyt
    I am really sickened that they didn't feel the need to tell you! Let us know what she has to say. I know the frustration. I also live 40 miles from my hospital and will have to go 300 mi. for rads. I have only seen my onc. in person 3 times. The other times it was a tele-conference on the TV. We don't have much of a choice if we want to switch Dr.'s. But I would ask for copies from her of all tests and changes in your status in the future..and let her know you mean business. I am wishing you the best of luck.
    God bless
    Jackie
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #11
    Jan_M said:

    I think if Drs. told us all
    I think if Drs. told us all the side effects we would get from treatment, few would go for treatment. But I do not think they have a right to withhold information from us about our bodies.

    I found out better information on these boards than I did from the Dr.

    I hope you feel better soon.

    Amen, Jan_M!
    Prior to chemo, I had been informed to the point of being utterly overwhelmed (and probably needless to say, almost scared beyond my wits) by what to do/what to watch out for/possible side effects, etc. ... Even had 24/7 emergency phone #s for oncs "on call"... Both in person during "consultation" appointments and via REAMS of printed materials to read at home.

    Following my final treatment - I experienced something that absolutely blew my mind (and my poor husband's) because I didn't have a clue what was happening, nor why. When I challenged my onc: "Why didn't ANYBODY tell me this might happen???" - his response was something close to this: "Chemotherapy is understandably frightening. If we told each & every patient about each & every side effect that MIGHT happen, MORE people would refuse treatment (because some do); and, therefore, more patients would die." So, you are exactly correct in your assumption.

    However, there is a huge difference between information regarding POSSIBLE side effects and withholding information within test results.

    Kind regards, Susan
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #12
    dorothyt said:

    Thank's everyone, I have an
    Thank's everyone, I have an appointment in June to see my ONC. I will ask her why she did not tell me. I live in a rural area, I'm about 50 miles from the doctors that I'm seeing now so it is not easy to change doctors. May God Bless You All.

    Hello, dorothyt!
    First, you are an angel on earth via the ways in which you earn a living!

    And, I'm sorry you're still not feeling well enough to resume working. Please do speak openly about this issue, and any & all others you may be experiencing, at your next appointment with your doctor. I'll be hoping you'll get some answers & guidance.

    Although I fully realize that we're all different here, with different treatments & side effects - I am personally amazed by those who work DURING treatment, or return to work as soon as they've finished. My own experience has been very different. Like you, I'm still frustrated by my inability to return to work. I worked my entire life before BC - started at 16, and never stopped. I miss working. My pocketbook misses it even more!

    I asked my surgeon: how long until my body has completely healed from surgery? He said: "about a year..."
    Next, I asked my medical oncologist: how long until my body has completely healed from chemotherapy? He said: "about a year..."
    Then, I asked my radiation oncologist: how long until my body has completely healed from radiation therapy? She said (you guessed it!): "about a year..."

    So, about a year after completion of rads - I felt like a loser! Asking myself: Why don't I feel "all better" - it's been A YEAR! Well, dummy I was... 1 year + 1 year + 1 year = 3 YEARS!!!

    I sincerely hope this won't be so for you. Good luck with that next appointment; and, please keep us posted.

    Kind regards, Susan
  • Kaymc
    Kaymc Member Posts: 19
    #13
    dorothyt said:

    Thank's everyone, I have an
    Thank's everyone, I have an appointment in June to see my ONC. I will ask her why she did not tell me. I live in a rural area, I'm about 50 miles from the doctors that I'm seeing now so it is not easy to change doctors. May God Bless You All.

    I hope you let your doc know
    I hope you let your doc know that you are to be told everything. It is terrible when "they" do things "for your own good" or because they "forget". Anyway. I guess I have been a lucky one. I went back to work 7 weeks after my surgery. I have had some nerve pain and found a chiropractor that has helped alot. Also massage seems to help too. Bless you on your journey and keep your spirits up. Kaymc
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #14
    Dorothy, I know it feels
    Dorothy, I know it feels like it's going on forever. It's been 2 yrs since my last chemo and I'm still only working part time. I hope when you see your doc next they can help you out with all these ongoing problems. I definitely agree with others that your doc should have told you about the spot on your liver. Personally I would can him immediately as he can't be trusted to tell you the true nature of your cancer. My mother-in-law who has passed away from BC found out by accident that she was palliative. I can't tell you how shocked she was. And my father-in-law developed emphysema from working in a steel plant for 40yrs and he too found out by accident that he had emphysema. They let him continue working in that environment without him knowing the damage it was causing.

    I do hope you find your answers and get this worked out.

    jan
  • tommaseena
    tommaseena Member Posts: 1,769
    #15
    phoenixrising said:

    Dorothy, I know it feels
    Dorothy, I know it feels like it's going on forever. It's been 2 yrs since my last chemo and I'm still only working part time. I hope when you see your doc next they can help you out with all these ongoing problems. I definitely agree with others that your doc should have told you about the spot on your liver. Personally I would can him immediately as he can't be trusted to tell you the true nature of your cancer. My mother-in-law who has passed away from BC found out by accident that she was palliative. I can't tell you how shocked she was. And my father-in-law developed emphysema from working in a steel plant for 40yrs and he too found out by accident that he had emphysema. They let him continue working in that environment without him knowing the damage it was causing.

    I do hope you find your answers and get this worked out.

    jan

    Work
    I went back to work 4 wks after my surgery and am still working full time everyday except the day I have chemo treatment then I either work 1/2 a day or not at all depending on what time my chemo treatment is.

    Your doctor should have told you the results found--it is your body and not theirs---we all have a right to know what is going on with our bodies.

    Best wishes,
    Margo
  • Lelana
    Lelana Member Posts: 32
    #16
    discloser !
    Hello Dorothyt,
    My name is Tom and my wifes name is Loni.
    It took two different scans, a catscan and a petscan to find a spot on Loni's liver before the doctor told us about it. it's my feeling that he just wanted to be sure of the results before doing anything about it. In fact after those scans he had a consultation with the radioligist to be sure about the results. There is no use scaring the patiant, it's counter- productive. I wouldn't jump to conclusions about your doctor, but discuss everything on your mind with (her or him). Your doctor more than likely is looking out for you. My wife is the kind of person that gets scared very easily, and does not want to know, just do what has to be done! I on the other hand have to know everything there is to know, and only tell Loni what to expect when the time comes. It upsets me to no end that we are not told everything, but I have come to understand what the doctors have to deal with. Everyone is different and the doctors can't be sure how a patiant will respond to news about their condition. So they want to be sure of what they are telling you, and what they can do for you. I hope your doctor is as good as ours is. Do ask everything about yourself and your condition though, and have faith in your doctor and God will do the rest.
    At least that's what we are doing, and I do ask everything !
    I do the research on the computer also, so I can keep informed. Somethings I find have to be ignored though, like all the side affects are not going to be yours. Although the last drug Loni had everyone and had to be taken off that drug. It does happen, but not all the time!
    Loni and I wish you the best and can get the answers you seek from your doctor !
    Call you doctor anytime you feel and ask want you want to know, they will tell you, but you sometimes have to ask!
    Tom and Loni

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