Any tips on how to communicate with oncologists/staff??

pattic
pattic Member Posts: 23
edited March 2014 in Breast Cancer #1
I am beyond frustated with the nurse at my oncologist's. She just called me back to answer a few questions I had regarding Femara. She is very condensending in her tone and trys to passify me rather than answer what I consider to be valid concerns. I needed to know when I was to start the Femera, 4 weeks post-op (oopherectomy) or post last doctor visit, when and how will the bone density test be done, and could they add a vitamin D level check to my next blood draw. What I got from her on the bone density and vitamin D questions was that "I was fine", "I was going to be just fine" etc. I cry easily these days, but have always cried when I get angry, which was the case today. This of course lead her to believe I was just being emotional. I tried to explain through my tears that I was only trying to make sure I was doing what I could to make sure I would tolerate the Femara since I was unable to tolerate the Tamoxifen due to the bone and joint pain. Bottom line was that they won't do a vitamin D test, that maybe my PCP could request one, even though the oncologist had told me told me to 1) research the Femara so I would know what to expect as far as side effects, and 2) to start taking calcium and vitamin D (have been on both for years). Any tips would be greatly appreciated.

Comments

  • webbwife50
    webbwife50 Member Posts: 394
    #2
    One of the most important
    One of the most important things I have learned from my "cancer experience" is not to put up with medical professionals that don't answer my questions, or who don't want to do things the way I want. If they don't, I need a good reason. I would tell your onc the next opportunity you have, and ask who would be the best person for you to ask to speak with when you have questions in the future. Don't put up with any bull ****, you have enough on your plate. Sorry for the bs but I hate to hear about bc patients being treated with anything but kindness and respect. God bless and I hope that helped.
    alison
  • sea60
    sea60 Member Posts: 2,613
    #3
    webbwife50 said:

    One of the most important
    One of the most important things I have learned from my "cancer experience" is not to put up with medical professionals that don't answer my questions, or who don't want to do things the way I want. If they don't, I need a good reason. I would tell your onc the next opportunity you have, and ask who would be the best person for you to ask to speak with when you have questions in the future. Don't put up with any bull ****, you have enough on your plate. Sorry for the bs but I hate to hear about bc patients being treated with anything but kindness and respect. God bless and I hope that helped.
    alison

    I agree with Alison
    It really bakes my cookies when I here that type of treatment towards patients. You just want answers. I'm sorry you had to deal with that.

    You definitely need to bring it up with your Oncologist and ask from this point on who else you can talk to when you need answers or direction. I'm not saying to be rude but you can certainly relay what happened in a professional manner.

    It's your right.

    Hope it works out.

    Hugs,

    Sylvia
  • carkris
    carkris Member Posts: 4,553 Member
    #4
    sea60 said:

    I agree with Alison
    It really bakes my cookies when I here that type of treatment towards patients. You just want answers. I'm sorry you had to deal with that.

    You definitely need to bring it up with your Oncologist and ask from this point on who else you can talk to when you need answers or direction. I'm not saying to be rude but you can certainly relay what happened in a professional manner.

    It's your right.

    Hope it works out.

    Hugs,

    Sylvia

    I learned the hard way to
    I learned the hard way to call them on it. 'you tell me to look it up but when I ask questions you sound condescending" My onc has a way of getting off track, I just bring him back, and keep stating my point I also am quite honest and confident in how I feel. this came from hitting bottom, I also feel this board has helped. I now know when they act like they never heard of my symptoms that I am not crazy. Dont feel bad, they go home at night, you have to live with the consequences. they need to do their job! Tell them how frustrated you are!!
  • shy violet
    shy violet Member Posts: 167
    #5
    I have learned you must keep
    I have learned you must keep in charge of your tx plan...what I mean is read books and magazines and go to trusted websites. This will leave you less vulnerable to the frustration of not knowing. Stand your ground...if you don't understand tell them...also it is helpful to have someone with you at your appts...I had a patient navigator through the cancer center I went to. She is usually a healthcare professional who goes and also helps coordinate and make sure you are getting what you need. I had tremendous resistance when I said I didn't want reconstruction from my onc, my plastic surgeon, my onc surgeon, etc. I knew I was at high risk for recurrance, had heart damage from chemo, and my body would not do well with multiple surgeries...I stood with my decision and I did indeed have a recurrance, and my cardiologist said no to more surgery...Know your body, know what you want and seek help from an advocate...call your ACS office...they can help you with this...love, shy
  • 24242
    24242 Member Posts: 1,398 Member
    #6
    shy violet said:

    I have learned you must keep
    I have learned you must keep in charge of your tx plan...what I mean is read books and magazines and go to trusted websites. This will leave you less vulnerable to the frustration of not knowing. Stand your ground...if you don't understand tell them...also it is helpful to have someone with you at your appts...I had a patient navigator through the cancer center I went to. She is usually a healthcare professional who goes and also helps coordinate and make sure you are getting what you need. I had tremendous resistance when I said I didn't want reconstruction from my onc, my plastic surgeon, my onc surgeon, etc. I knew I was at high risk for recurrance, had heart damage from chemo, and my body would not do well with multiple surgeries...I stood with my decision and I did indeed have a recurrance, and my cardiologist said no to more surgery...Know your body, know what you want and seek help from an advocate...call your ACS office...they can help you with this...love, shy

    Mother a Nurse
    Doctors can be offended and telling them doesn't work very well.
    My mother said working in home care people got labeled even as nuttie and I can't imagine how helpful that would be.
    People do not like the way I talk because I am matter of fact and have a strong voice. But I tell you that is the only way I got diagnosed the last time because I wouldn't settle for two doctors opinions I moved on to the hospital Emergency in horrid pain and was having surgery in 2.5 weeks with stage 3 after just a fibrous cyst.
    Stand up and if you lack quality to your life that is all the indicater you need. I know the only reason I am feeling better is because I haven't been working since pain and work just drive me into the ground.
    I have been back seeing doctors since end of January and quite franklyl feel the quality of their care has gone down though there are less patients being seen at my facility. I also know that I had no choice but to go back to Cancer Clinic because they should still be there for me after all these years. Believe you me they know allot more about my cancer than they did back then not that I think that is helping me right now lolol.
    Tara
  • carkris
    carkris Member Posts: 4,553 Member
    #7
    24242 said:

    Mother a Nurse
    Doctors can be offended and telling them doesn't work very well.
    My mother said working in home care people got labeled even as nuttie and I can't imagine how helpful that would be.
    People do not like the way I talk because I am matter of fact and have a strong voice. But I tell you that is the only way I got diagnosed the last time because I wouldn't settle for two doctors opinions I moved on to the hospital Emergency in horrid pain and was having surgery in 2.5 weeks with stage 3 after just a fibrous cyst.
    Stand up and if you lack quality to your life that is all the indicater you need. I know the only reason I am feeling better is because I haven't been working since pain and work just drive me into the ground.
    I have been back seeing doctors since end of January and quite franklyl feel the quality of their care has gone down though there are less patients being seen at my facility. I also know that I had no choice but to go back to Cancer Clinic because they should still be there for me after all these years. Believe you me they know allot more about my cancer than they did back then not that I think that is helping me right now lolol.
    Tara

    I am a nurse too, and I see
    I am a nurse too, and I see how one can get caught up in the everydayness of the job. but one has to remember that this is your first time. I found that my providers were caring, but almost needed guidance from me. I think you have to teach people how to treat you. That you arent a number and one size does not fit all. This is an emotional thing, if you cry you deserve to. you arent crying about a hangnail. This is a life threatening, life altering disease. They should know this, but I think sometimes they forget and need to be reminded. I consider it a teaching moment, and also think it helps other patients when you speak up. Its always uncomfortable but you deserve to be treated with respect.
  • pattic
    pattic Member Posts: 23
    #8
    carkris said:

    I am a nurse too, and I see
    I am a nurse too, and I see how one can get caught up in the everydayness of the job. but one has to remember that this is your first time. I found that my providers were caring, but almost needed guidance from me. I think you have to teach people how to treat you. That you arent a number and one size does not fit all. This is an emotional thing, if you cry you deserve to. you arent crying about a hangnail. This is a life threatening, life altering disease. They should know this, but I think sometimes they forget and need to be reminded. I consider it a teaching moment, and also think it helps other patients when you speak up. Its always uncomfortable but you deserve to be treated with respect.

    Thank you all...
    I truely appreciate all of your thoughts and direction. My therapist advised me to write a letter to my oncologist regarding the exchange. At first I was reluctant, I didn't want to get anyone in trouble. However, after some thought, I decided to go ahead and write the letter. It was wrong how I was treated. I have valid questions and concerns, and I deserve to be treated with consideration and respect. And more than that, if this helps another patient avoid this type of treatment it will be well worthwhile. Thanks again, your caring words have lifted my spirit!
  • shelbyhome
    shelbyhome Member Posts: 145
    #9
    When I was diagnoised I was
    When I was diagnoised I was in Florida and the onc. I saw there I really liked and when I came back home to Michigan the one I have I'm not really fond of, he will say things like oh just enjoy life or he gave my husband a script to take me to red lobster to get calcium..... I am trying to figure out how I can just see the one in Florida, I just don't feel like he is listening to me and taking me seriously. The nurse he has is great she listens and address's all my questions and concerns. I wish you luck in whatever you do, just stand up for yourself it is our lives that we are dealing with and we are in control. As a friend of mine says "you aren't the boss of me" Hugs
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #10
    unresponsive doc and nurse
    That just sucks and really leaves you with only a few choices: 1) see a new doctor as the one you are seeing is not listening to you 2) keep seeing the same doc but have your pcp do the vit d level and, if it is really low, ask for a referral to an endocrinologist (which is exactly what I did)3) when all else fails, bring some kind of baked goods to your next appt and, after you get them in a good mood, ask again. Sometimes food works when nothing else does ;-).
  • pattic
    pattic Member Posts: 23
    #11
    CypressCynthia said:

    unresponsive doc and nurse
    That just sucks and really leaves you with only a few choices: 1) see a new doctor as the one you are seeing is not listening to you 2) keep seeing the same doc but have your pcp do the vit d level and, if it is really low, ask for a referral to an endocrinologist (which is exactly what I did)3) when all else fails, bring some kind of baked goods to your next appt and, after you get them in a good mood, ask again. Sometimes food works when nothing else does ;-).

    Dear CypressCynthia...
    Please excuse my ignorance, but what exactly does an endocrinologist do? I was able to get the lab order for the vitamin D levels from my PCP, who is awesomely wonderful!

    Thanks for the support and advice!
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #12
    pattic said:

    Dear CypressCynthia...
    Please excuse my ignorance, but what exactly does an endocrinologist do? I was able to get the lab order for the vitamin D levels from my PCP, who is awesomely wonderful!

    Thanks for the support and advice!

    Bascially they optimize our
    Bascially they optimize our bodies and keep it regulated so its finely tuned. There the unsung heroes and often misunderstood but their training is highly respected.


    An endocrinologist is a specially trained doctor. Endocrinologists diagnose diseases that affect your glands. They know how to treat conditions that are often complex and involve many systems within your body. Your primary care doctor refers you to an endocrinologist when you have a problem with your endocrine system.

    What is the endocrine system?
    The endocrine system is a complex group of glands. Glands are organs that make hormones. These are substances that help to control activities in your body. Different types of hormones control reproduction, metabolism (food burning and waste elimination), and growth and development. Hormones also control the way you respond to your surroundings, and they help to provide the proper amount of energy and nutrition your body needs to function. The glands that make up the endocrine system include the thyroid, parathyroid, pancreas, ovaries, testes, adrenal, pituitary and hypothalamus.

    What do endocrinologists do?
    Endocrinologists are trained to diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in your system. They take care of many conditions including:

    •diabetes
    •thyroid diseases
    •metabolic disorders
    •over or under production of hormones
    •menopause
    •osteoporosis
    •hypertension
    •cholesterol (lipid) disorders
    •infertility
    •lack of growth (short stature)
    •
    Endocrinologists also conduct basic research to learn the way glands work, and clinical research to learn the best methods to treat patients with a hormone imbalance. Through research, endocrinologists develop new drugs and treatments for hormone problems.

    What type of medical training do endocrinologists receive?
    Endocrinologists finish four years of medical school and then spend three or four years in an internship and residency program. These specialty programs cover internal medicine, pediatrics, or obstetrics and gynecology. They spend two or three more years learning how to diagnose and treat hormone conditions. Overall, an endocrinologist's training will take more than 10 years.

    What are the most common endocrine diseases and disorders?
    Diseases and disorders of the endocrine system can be grouped into several different areas. Some endocrinologists focus on one or two endocrine system diseases, such as diabetes, pediatric disorders, thyroid, or reproductive and menstrual disorders. Others work in all areas of endocrinology. The major areas of endocrinology are described below.

    Diabetes
    Patients with diabetes have too much sugar in their blood. Recent studies have found that controlling blood sugar helps prevent serious problems that can be caused by diabetes. These can include problems with the eyes, kidneys and nerves, which can lead to blindness, dialysis, or amputation. Endocrinologists treat diabetes with diet and medications, including insulin. They also work closely with patients to control blood sugar and monitor them so they can prevent health problems.

    Thyroid
    Patients with thyroid conditions often have problems with their energy levels. They may also have problems with muscle strength, emotions, weight control, and tolerating heat or cold. Endocrinologists treat patients with too much or too little thyroid hormone (conditions respectively caused by either an overactive or underactive thyroid). They help patients reach a hormone balance by replacing or blocking thyroid hormone. Endocrinologists also receive special training to manage patients with thyroid nodules or thyroid cancer, and enlarged thyroid glands.

    Bone
    Osteomalacia (rickets), which causes bones to soften, and osteoporosis are bone diseases that endocrinologists diagnose and treat. Osteoporosis is a disease that weakens your skeleton. Certain hormones act to protect bone tissue. When hormone levels are abnormal, bones can lose calcium and weaken. Menopause, in women, and loss of testicle function, in men, and aging may put you at risk for bone fractures. Endocrinologists treat other disorders that can affect bones, such as too much parathyroid hormone and long term use of steroids like prednisone.

    Reproduction/Infertility
    About one in ten American couples are infertile. Endocrine research has helped thousands of couples to have children. Endocrinologists diagnose and treat hormone imbalances that can cause infertility, and also assess and treat patients with reproductive problems. They work with patients who need hormone replacement. Problems treated by endocrinologists specializing in reproductive endocrinology include menopause symptoms, irregular periods, endometriosis, polycystic ovary syndrome (PCOS), premenstrual syndrome, and impotence.

    Obesity and Overweight
    Endocrinologists treat patients who are overweight or obese, sometimes because of metabolic and hormonal problems. When someone is obese they have too much body fat. Thyroid, adrenal, ovarian, and pituitary disorders can cause obesity. Endocrinologists also identify factors linked with obesity, such as insulin resistance and genetic problems.

    Pituitary Gland
    The pituitary is often called the master gland of the body because it controls other glands. The pituitary makes several important hormones. Over - or under - production of pituitary hormones can cause a hormone imbalance that can lead to infertility, menstrual disorders, growth disorders (acromegaly or short stature) and too much cortisol production (Cushing's syndrome). Endocrinologists control these conditions with medications and refer patients who need surgery.

    Growth
    Children and adults can have effects from not making enough growth hormone. Pediatric endocrinologists treat children who suffer from endocrine problems that cause short stature and other growth disorders. Adults with growth hormone deficiency can experience emotional distress and fatigue. Safe and effective growth hormone replacement therapy is available for people with growth hormone imbalance.

    Hypertension
    Hypertension is high blood pressure, and it is a risk factor for heart disease. Up to 10% of people have hypertension because of too much aldosterone, a hormone produced in the adrenal glands. About half of these cases are caused by growths that can be removed with surgery. Conditions such as the metabolic syndrome or a rare adrenal growth called a pheochromocytoma also may cause a hormone imbalance that leads to hypertension. These conditions also can be treated successfully.

    Lipid Disorders
    Patients with lipid disorders have trouble maintaining normal levels of body fats. One of the most common lipid disorders is hyperlipidemia - high levels of total cholesterol, low-density lipoprotein cholesterol (known as "bad" cholesterol), and/or triglycerides in the blood. High levels of these fats are linked to heart (coronary) disease, strokes, and peripheral vascular disease (problems with circulation in the legs). Endocrinologists are trained to detect factors that may be related to lipid disorders, such as hypothyroidism (a hormone imbalance caused by thyroid conditions), drug use (such as steroids), or genetic or metabolic conditions. Lipid disorders can be found in several conditions that require special management, including the metabolic syndrome, polycystic ovary syndrome (PCOS), and obesity. Special diets, exercise, and medications may be prescribed to manage hyperlipidemia and other lipid disorders.

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