Patient Communication

It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals. It is important that we have a common understanding of what hospice care is before answering this question. Hospice provides care for a patient who has a terminal diagnosis, with expectation of a prognosis of 6 months or less, and is usually no longer seeking curative treatment. Hospice focuses on relieving symptoms and supporting patients and is provided in the home, in a residential setting, or in the hospital. Another way of looking at it, is that hospice care provides palliative care for those approaching the last stages of life. I find that the best first step in addressing discussions about hospice with patients and families is to first understand what they know about their underlying diagnosis, their treatment options and how their illness is impacting their quality of life. I want to also understand what is most important to a patient and family when the prognosis is limited. Once I know what a patient and family hope to achieve and what is most important to them I can best help to guide treatment and make use of hospice services to help maximize their quality of life and help them to achieve their goals.

Before any chemotherapy treatment a nurse must discussed with a patient potential complications that may occur when receiving an infusion. The nurse must do it in a manner that it is not alarming to the patient, but the patient is aware that they must seek the nurse’s attention if something should occur.

I tell my patients, if they feel different while they are receiving the infusion, they must tell someone, before the infusion progresses. Do not assume that the feelings that they are having are normal. Let the nurse make the nursing judgment.

I explain to my patient’s if they feel:
• Uneasiness or agitation
• Abdominal cramping
• Itching
• Chest tightness
• Light headed or dizziness’
• Chills
• Back pain
• Face turning red-flushed
• Nausea
• Difficulty speaking
• Burning or an uncomfortable feeling at the infusion site.

During the infusion, the nurse also must observe and ask the patient “How are you feeling?” while they are receiving the chemotherapy for potential reactions to the chemotherapy infusion as well.
Before any chemotherapy treatment a nurse must discussed with a patient potential complications that may occur when receiving an infusion. The nurse must do it in a manner that it is not alarming to the patient, but the patient is aware that they must seek the nurse’s attention if something should occur.

I tell my patients, if they feel different while they are receiving the infusion, they must tell someone, before the infusion progresses. Do not assume that the feelings that they are having are normal. Let the nurse make the nursing judgment.

I explain to my patient’s if they feel:
• Uneasiness or agitation
• Abdominal cramping
• Itching
• Chest tightness
• Light headed or dizziness’
• Chills
• Back pain
• Face turning red-flushed
• Nausea
• Difficulty speaking
• Burning or an uncomfortable feeling at the infusion site.

During the infusion, the nurse also must observe and ask the patient “How are you feeling?” while they are receiving the chemotherapy for potential reactions to the chemotherapy infusion as well.

I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful. I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful.

First of all, I would like to say that - of course - every patient has the right to choose her own treatment for breast cancer. And, furthermore, stopping in the middle of treatment is a personal decision. However, with that said, I fully understand why your radiation oncologist was frustrated by your choice.

Because you work in a cancer hospital, I assume that you are aware of the fact that if a woman chooses mastectomy, she does NOT require radiation after tumor removal. However, with lumpectomy, radiation is indeed the standard of care, and for good reason: no matter what the surgical margins are, no doctor can guarantee that microscopic cancer cells do NOT remain at the site. For this reason, without radiation therapy to kill any remaining cancer cells, local recurrence becomes a significantly higher risk.

As a survivor of invasive breast cancer-not DCIS-I chose to complete all recommended treatment to minimize my chances for local OR distant recurrences. And, knowing that I completed treatment has given me peace of mind as I have moved forward in my life after my diagnosis. Without that knowledge, I don't feel my emotional/psychological well-being could be where it is today.

Since you made a different choice, I would advise you to continue screening your breasts with regularity since local recurrence will always be a possibility. Also, please make sure your current gynecologist and internist are aware of your history so they can follow you closely to catch anything irregular before it is too late.
First of all, I would like to say that - of course - every patient has the right to choose her own treatment for breast cancer. And, furthermore, stopping in the middle of treatment is a personal decision. However, with that said, I fully understand why your radiation oncologist was frustrated by your choice.

Because you work in a cancer hospital, I assume that you are aware of the fact that if a woman chooses mastectomy, she does NOT require radiation after tumor removal. However, with lumpectomy, radiation is indeed the standard of care, and for good reason: no matter what the surgical margins are, no doctor can guarantee that microscopic cancer cells do NOT remain at the site. For this reason, without radiation therapy to kill any remaining cancer cells, local recurrence becomes a significantly higher risk.

As a survivor of invasive breast cancer-not DCIS-I chose to complete all recommended treatment to minimize my chances for local OR distant recurrences. And, knowing that I completed treatment has given me peace of mind as I have moved forward in my life after my diagnosis. Without that knowledge, I don't feel my emotional/psychological well-being could be where it is today.

Since you made a different choice, I would advise you to continue screening your breasts with regularity since local recurrence will always be a possibility. Also, please make sure your current gynecologist and internist are aware of your history so they can follow you closely to catch anything irregular before it is too late.

I love this question too! Thank you!

During my post surgical complications, I knew I could not continue healing at my best in my current state of mind. I also knew that I could not change my surgeon and how he interacted with me. The only change I could create was in myself and how I chose to engage with him and his staff. With the help of author Caroline Myss, (Defy Gravity), I meditated and focused on reinventing my relationship with my surgeon (and my life). I surrendered to the situation and flipped my state of mind from one of fear and anger to love and trust. I genuinely fell in love with my surgeon. I had to in order to be authentic to my new path. I softened and relaxed ………,and he did too. He slowed down and got to know and care about me as a person. This was an amazing gift that I really did not appreciate the signifiacance of at first. Actally being a person that mattered rather than one of many patients was critical to my "survival" (primitively speaking).
Needless to say, my reconstruction surgery went very well and I am continueing to heal with full appreciation for my new life that seems to be brimming with grace and opportunities. I love this question too! Thank you!

During my post surgical complications, I knew I could not continue healing at my best in my current state of mind. I also knew that I could not change my surgeon and how he interacted with me. The only change I could create was in myself and how I chose to engage with him and his staff. With the help of author Caroline Myss, (Defy Gravity), I meditated and focused on reinventing my relationship with my surgeon (and my life). I surrendered to the situation and flipped my state of mind from one of fear and anger to love and trust. I genuinely fell in love with my surgeon. I had to in order to be authentic to my new path. I softened and relaxed ………,and he did too. He slowed down and got to know and care about me as a person. This was an amazing gift that I really did not appreciate the signifiacance of at first. Actally being a person that mattered rather than one of many patients was critical to my "survival" (primitively speaking).
Needless to say, my reconstruction surgery went very well and I am continueing to heal with full appreciation for my new life that seems to be brimming with grace and opportunities.

My mother is 87 and yesterday we were at her docs. Now she was brought up to think of docs as "gods" and authority figures that are never to be argued with or questioned or even to converse normally with. The docs were doing them a favor by taking care of their medical concerns. I saw this attitude with her yesterday, nodding and smiling and agreeing with whatever the doc said. This is not how to have a conversation with a doc! Luckily, her doc questioned her more thoroughly to elicit the type of information she needed to address my mother's current medical condition.

Being diagnosed with and treated for cancer as Beth above mentioned, makes one more comfortable with docs and other medical personnel. Once diagnosed I insisted on a second opinion and received one. I must say that experience was eye-opening! I had never been treated so shoddily by any doc, young or old, male or female. He was AWFUL, patronizing, cloying, with an attitude of "I'll tell you, you will not question me". I high- tailed it out of there and ran back to my original oncologist. As with any professional, respect should be showed by the patient to the doc but also the other way around! The doc should also show the patient respect and if she/he does not, then find another doc! Good customer service is expected wherever you go for whatever service you need. Medical care is no different. You and/or your insurance company is paying the bill for your medical treatment. If you are not shown respect and treated professionally, find someplace else to go! If you went to get your car fixed and the service people had a bad attitude and treated you and your car inappropriately, wouldn't you not find another car repair shop? As the old saying goes, "(s)he who holds the dollar makes the rules". You or your insurance co. holds this particular dollar, so if your needs are not being met find someone who will meet ALL your medical needs, including the need for humanity and respect.

Providing patients with information and encouraging conversation and exchange of ideas and thoughts and treating them with kindness and empathy would go a long way to encouraging them to ask and question. That starts with the medical personnel other than the doc. Having a pleasant and caring person taking vitals and other things that have to be accomplished in a medical office goes a long way in making a patient feel comfortable enough to participate in their own treatment, recovery and healing. I think if there is more discussion about this matter the general public will eventually demand more than medical information from their medical personnel. My mother is 87 and yesterday we were at her docs. Now she was brought up to think of docs as "gods" and authority figures that are never to be argued with or questioned or even to converse normally with. The docs were doing them a favor by taking care of their medical concerns. I saw this attitude with her yesterday, nodding and smiling and agreeing with whatever the doc said. This is not how to have a conversation with a doc! Luckily, her doc questioned her more thoroughly to elicit the type of information she needed to address my mother's current medical condition.

Being diagnosed with and treated for cancer as Beth above mentioned, makes one more comfortable with docs and other medical personnel. Once diagnosed I insisted on a second opinion and received one. I must say that experience was eye-opening! I had never been treated so shoddily by any doc, young or old, male or female. He was AWFUL, patronizing, cloying, with an attitude of "I'll tell you, you will not question me". I high- tailed it out of there and ran back to my original oncologist. As with any professional, respect should be showed by the patient to the doc but also the other way around! The doc should also show the patient respect and if she/he does not, then find another doc! Good customer service is expected wherever you go for whatever service you need. Medical care is no different. You and/or your insurance company is paying the bill for your medical treatment. If you are not shown respect and treated professionally, find someplace else to go! If you went to get your car fixed and the service people had a bad attitude and treated you and your car inappropriately, wouldn't you not find another car repair shop? As the old saying goes, "(s)he who holds the dollar makes the rules". You or your insurance co. holds this particular dollar, so if your needs are not being met find someone who will meet ALL your medical needs, including the need for humanity and respect.

Providing patients with information and encouraging conversation and exchange of ideas and thoughts and treating them with kindness and empathy would go a long way to encouraging them to ask and question. That starts with the medical personnel other than the doc. Having a pleasant and caring person taking vitals and other things that have to be accomplished in a medical office goes a long way in making a patient feel comfortable enough to participate in their own treatment, recovery and healing. I think if there is more discussion about this matter the general public will eventually demand more than medical information from their medical personnel.

Absolutely need to take along an advocate. Clear thinking is almost impossible when your defenses are down and fear takes over. A family member with experience is great; if not, a cancer coach can be quite helpful to ensure the questions are asked and the patient heard. Too often patients leave with many unresolved questions and feel pushed into a treatment they are not comfortable with or do not completely understand.

It is important that patients receive educational materials specific to their problem so that they can fully understand their disease and treatment options. Patient can record the conversation during their visit so that they can listen again to the discussion. Providing the opportunity for patients to speak with “experienced” patients is extremely helpful to be certain that all questions are answered. Open access via email so that additional questions can be answered is also valuable.

Absolutely. I often tell my patients that variations of this question are why I have a job. It is incredibly hard for people to to watch someone they love suffer. Most of us have the impulse to try to "fix," to make it better, to take some kind of concrete step to deal with the problem. And this impulse can mean that we actually totally fail to do the most helpful thing, which is to listen in a kind and compassionate way. I wrote a blog post about this issue a while back, so feel free to point loved ones over there for some coaching on compassionate listening: http://bit.ly/ozyxg2 I specifically deal with the tendency to try to fix. However, here are a few steps to deal with someone who is not listening.
1. Does your family or friend network have a "key communicator?" That's the person who always manages to keep everyone else in the loop, who coordinates family time. If so (and if that person isn't you), I'd encourage you to sit down with that person and outline your needs. Specifically, I'd be explicit about the fact that one of the things you need most is for people to allow you to express your feelings without trying to fix the situation. Then, I'd ask that person to spread the word.
2. Sometimes, being direct is the best way to get our needs met. This won't work with everyone, but some family members will respond well to hearing, "I can hear how much you want to help me, and I know it's hard for you to watch me go through this hard stuff. The most loving, supportive help that you can give me right this minute is to let me just empty this out of my head, so that I can set it down for a while."
3. If you're noticing that you have a lot of tough feelings that you need to process, it might be appropriate to take that to a therapist (or a pastor, or another neutral party). I know that I mention this in most of my answers, but there can be a huge relief in knowing that you're allowed to say whatever you need to without having to censor yourself.
I hope that is enough to get you started. Please feel free to ask me a follow-up with a new question if you'd like more details. Absolutely. I often tell my patients that variations of this question are why I have a job. It is incredibly hard for people to to watch someone they love suffer. Most of us have the impulse to try to "fix," to make it better, to take some kind of concrete step to deal with the problem. And this impulse can mean that we actually totally fail to do the most helpful thing, which is to listen in a kind and compassionate way. I wrote a blog post about this issue a while back, so feel free to point loved ones over there for some coaching on compassionate listening: http://bit.ly/ozyxg2 I specifically deal with the tendency to try to fix. However, here are a few steps to deal with someone who is not listening.
1. Does your family or friend network have a "key communicator?" That's the person who always manages to keep everyone else in the loop, who coordinates family time. If so (and if that person isn't you), I'd encourage you to sit down with that person and outline your needs. Specifically, I'd be explicit about the fact that one of the things you need most is for people to allow you to express your feelings without trying to fix the situation. Then, I'd ask that person to spread the word.
2. Sometimes, being direct is the best way to get our needs met. This won't work with everyone, but some family members will respond well to hearing, "I can hear how much you want to help me, and I know it's hard for you to watch me go through this hard stuff. The most loving, supportive help that you can give me right this minute is to let me just empty this out of my head, so that I can set it down for a while."
3. If you're noticing that you have a lot of tough feelings that you need to process, it might be appropriate to take that to a therapist (or a pastor, or another neutral party). I know that I mention this in most of my answers, but there can be a huge relief in knowing that you're allowed to say whatever you need to without having to censor yourself.
I hope that is enough to get you started. Please feel free to ask me a follow-up with a new question if you'd like more details.

I think this is a difficult choice for many women faced with this decision. Historically, mastectomy was the only operation available for breast cancer, and when the early clinical trials were conducted comparing mastectomy to lumpectomy, the surgeons and researchers faced a lot of criticism as it was a widely held belief that a radical operation was necessary if there was any chance of cure.

We now know thanks to that research, that there is no difference in the overall survival if a woman undergoes a mastectomy or a lumpectomy. However lumpectomy alone will result in a higher rate of the cancer returning in the breast, so radiation therapy after lumpectomy is necessary.

Absolute contraindications to breast conservation are multifocal cancer (cancer in multiple quadrants of the breast), inability to achieve an acceptable cosmetic result, and contraindications to radiation therapy (certain collagen-vascular diseases such as scleroderma). A history of prior radiation therapy to the breast is often a contraindication to breast conservation as well, but several clinical trials are examining the safety and effectiveness of limited radiation therapy in patients who have previously undergone whole-breast radiation.

Other than that, for most women with early-stage breast cancer, they do have choices. We tend to think having options is a good thing, but many women do struggle tremendously with this decision. I think this is a difficult choice for many women faced with this decision. Historically, mastectomy was the only operation available for breast cancer, and when the early clinical trials were conducted comparing mastectomy to lumpectomy, the surgeons and researchers faced a lot of criticism as it was a widely held belief that a radical operation was necessary if there was any chance of cure.

We now know thanks to that research, that there is no difference in the overall survival if a woman undergoes a mastectomy or a lumpectomy. However lumpectomy alone will result in a higher rate of the cancer returning in the breast, so radiation therapy after lumpectomy is necessary.

Absolute contraindications to breast conservation are multifocal cancer (cancer in multiple quadrants of the breast), inability to achieve an acceptable cosmetic result, and contraindications to radiation therapy (certain collagen-vascular diseases such as scleroderma). A history of prior radiation therapy to the breast is often a contraindication to breast conservation as well, but several clinical trials are examining the safety and effectiveness of limited radiation therapy in patients who have previously undergone whole-breast radiation.

Other than that, for most women with early-stage breast cancer, they do have choices. We tend to think having options is a good thing, but many women do struggle tremendously with this decision.

Thank You ... I really appreciate this. The one's who use tough love are very close to me ... husband and daughter. I learned a month ago I have stage 2 breast cancer. The good news is it did not attach itself to the nodes. I am struggling with not really knowing IF I have cancer. I had the tumor removed last week and have an appointment with the doctor to go over the results and start treatments. If I am asking whether or not I have cancer, then I think they might be asking the same thing.

It's hard on all of us. No one knows what to say really. And I don't know how to express my needs without breaking down. I have said that tough love is not what I need right now. I tell them both that I need tenderness and understanding.

I feel like I am caught in a wind tunnel and I am being spun around with no escape.

I wish I could please everyone and help them with the feelings they have too. They are just as confused as I am and I wish they didn't have to go through this at all. It's almost like I feel guilty for doing this to them.

It's such a vicious circle. I don't know what to do ... Oh, that is always a difficult scenario. Obviously, I don't know the specifics of your situation, or the closeness of the relationship you're asking about, so my suggestions are going to be pretty general. The most important thing to do (and this is _hard_--so be sure you're getting some support) is to clearly define your own needs and boundaries. The fact that you're asking the question suggests that "tough love" doesn't feel helpful right now--in fact it may feel like it's dismissing your struggle or even making things worse. Once you understand your own needs, the next step is to give yourself permission to have those needs. All too often, we minimize our needs because we feel like we "don't want to be trouble," or we "don't deserve special treatment" or, or, or. We have to give ourselves permission to have our needs before we can set good boundaries for others. After defining needs and giving yourself permission to have them, the next step is to communicate your needs/boundaries to others. So, in the case of the "tough love" advocate, you might try several approaches. Ideally, it would be enough to simply say, "I know you're trying to support me, and I'm so grateful for that. Facing this illness is really taking all my energy right now, so I don't have much left over to "get tough."" If the direct approach doesn't work (and this isn't a partner or other member of your direct household), you may need to create some space from them for a while. Finally, if you have a good advocate among your friends and family, you might ask her/him to run interference for you. I know that this is a very short look at what may be a complex problem, but I hope that you found some useful & supportive suggestions. Please feel free to ask for clarification.

My son was 2 years old at the time I got diagnosed, so for me it was very important not to upset our daily life and routines. I also felt it was really important to include him in every step of my journey,especially when my hair started falling out. After a week of it falling out all over the place I decided to go to the barber and shave the rest down. I took him with me so he could see mommy getting a haircut instead of shocking him and coming home with no hair. He thought it was cool and when I was finished he said "I like your haircut mommy,now you look just like me." Through it all he noticed changes especially because some days instead of playing outside we may have played in bed, but he knew mommy was still mommy. My family and friends took the news much harder than I did and I found myself comforting them when they probably should have been comforting me. However, when they saw how I handled everything and that I was determined to get through this it eased their fears. I got up each and every day with a smile on my face and they quickly realized that 1. I was going to be just fine and 2. Cancer was not going to get the best of me or change me. My son was 2 years old at the time I got diagnosed, so for me it was very important not to upset our daily life and routines. I also felt it was really important to include him in every step of my journey,especially when my hair started falling out. After a week of it falling out all over the place I decided to go to the barber and shave the rest down. I took him with me so he could see mommy getting a haircut instead of shocking him and coming home with no hair. He thought it was cool and when I was finished he said "I like your haircut mommy,now you look just like me." Through it all he noticed changes especially because some days instead of playing outside we may have played in bed, but he knew mommy was still mommy. My family and friends took the news much harder than I did and I found myself comforting them when they probably should have been comforting me. However, when they saw how I handled everything and that I was determined to get through this it eased their fears. I got up each and every day with a smile on my face and they quickly realized that 1. I was going to be just fine and 2. Cancer was not going to get the best of me or change me.

I wish that my physician (who is no longer my physician) had explained the relationship between steroids (the reason for pre-medicating with steroids) and the chemo drugs. I am the type of person that wants to know the reason behind everything. It is important to me to understand why I am taking a medication. I like to know as much as possible about the medication and the possible side effects. (I.e., I am probably a pain in the butt for a patient).



What I feel I missed out on was having an understanding about the purpose of the steroids (to allow my body to take the chemotherapy drugs without having an allergic response).


When I had my first chemo round I was told what doses of the steroids to take prior to my first infusion. I followed the directions carefully and exactly. I did pretty well with the Herceptin and not too bad with the Carboplatin. But, when I started getting Taxotere (Docetaxel) I began to experience pain in my chest and a lot of tightness in my chest. I also began to feel hot all over. Since it was my first infusion, I was being watched pretty closely for any reactions. My nurse slowed the rate of infusion and administered additional steroids (solumedrol was one of them). This improved my situation and I was able to complete the first chemo round.


My nurse (who was fabulous through all of my treatments) told me that because I had a reaction to Taxotere - I would need to have my doctor change the premedication doses prior to my next chemo round. I am sure she made note of this in my file as well. But, she told me to follow up with my doctor about it.


So, I did. I kept asking about the premedication dose, that I was told it needed to be different for the next chemo round. When I finally heard back (you will see why I fired my first oncologist) I was told not to take any pre-medications (other than the emend - anti-emetic - the morning of chemo). So, being the good patient I was (and sadly, not understanding what the steroids were used for) I followed the directions given by my doctor and did not take any steroids prior to my second chemo round.


My nurse administered steroids just prior to my infusion (as they had done before) but, I did not have the proper pre-medications (the steroid pre-medication dose should have been increased, not eliminated based upon my reaction to Taxotere during my first chemo round). I got through the Herceptin okay and also the Carboplatin. But, very quickly after Taxotere was administered, I went into anaphylactic shock and stopped breathing. It was horrifying.


It happened so fast. One second I was feeling okay, the next I felt that same pain coming on and heat and then very quickly I could no longer speak or breathe. I was in a semi-private room, with one other patient. No one else. The other patient was listening to music with ear phones and so I could not get her attention. But, incredibly, her daughter came back into the room (she had gone on a Starbucks run for her mom). And, even more luck, she just happened to be a chemo nurse as her profession. She saw me in distress and quickly got my amazing nurse who literally saved my life. They stopped the chemo fast, administered a lot of steroids and luckily I came out of it. I never saw people move so fast and work so fast. I am so incredibly grateful for the fact that my nurse was so very competent and talented. She truly saved my life.


So, I wish the reason for steroids had been explained to me. If it had, I would have known that decreasing the dose (to zero) the day preceding chemo was a mistake.


When I met with my oncologist (the one who i later fired) my first impression was that he felt I was taking up too much of his time and that my questions were annoying to him.


I also did not like the answers I was getting. I did not like the fact that he made me feel like my questions were somehow irritating to him and that he felt I should just trust him and not question him about why I would be taking one thing versus another. But, I really wanted to understand what I was going to go through.


As a result, I started seeing an oncologist out of pocket up at UCLA. She is amazing. After the anaphylactic shock incident, my insurance offered to pay for the oncologist of my choice (at UCLA) and allow me to continue treatment locally in Orange County under her supervision.


After that I felt prepared and informed about my treatment. I was one of those patients that seemed to react to everything. I had to have very slow chemo infusions as my body just wouldn't tolerate it. So I know that I was not/am not the typical patient with the typical reactions to drugs. But, I really wish I had been informed of the reason WHY I was taking the steroids. If I had, I would have realized that I needed an increase, not a decrease, in the steroid dose prior to the second chemo round. It would have been nice to have avoided the anaphylactic shock experience :)


Fortunately that is past. But, it taught me a huge lesson - to ask questions, even if your doctor doesn't seem to be in the mood for it that day. You are the only person in your body and the only person experiencing what is going on in your own body. You have to listen to that.


My current oncologist is excellent. She relies on me for information about my symptoms and she treats our relationship almost like it is a team effort (and, it truly is a team effort: patients have to cooperate, listen and ask questions and doctors need to listen to their patients and be responsive). I am fortunate now to have the right kind of doctor-patient relationship.


I am still struggling with Tamoxifen. I had a hard time adjusting to taking it. But, I feel that I was well informed about the drug and about other possible options (lupron and arimidex).


I hope this (very long winded) answer is helpful.


Incidentally, I found my pharmacist to be the most helpful when it came to explaining medications, interactions and side effects. I loved my pharmacist! She was so helpful to me! I wish that my physician (who is no longer my physician) had explained the relationship between steroids (the reason for pre-medicating with steroids) and the chemo drugs. I am the type of person that wants to know the reason behind everything. It is important to me to understand why I am taking a medication. I like to know as much as possible about the medication and the possible side effects. (I.e., I am probably a pain in the butt for a patient).



What I feel I missed out on was having an understanding about the purpose of the steroids (to allow my body to take the chemotherapy drugs without having an allergic response).


When I had my first chemo round I was told what doses of the steroids to take prior to my first infusion. I followed the directions carefully and exactly. I did pretty well with the Herceptin and not too bad with the Carboplatin. But, when I started getting Taxotere (Docetaxel) I began to experience pain in my chest and a lot of tightness in my chest. I also began to feel hot all over. Since it was my first infusion, I was being watched pretty closely for any reactions. My nurse slowed the rate of infusion and administered additional steroids (solumedrol was one of them). This improved my situation and I was able to complete the first chemo round.


My nurse (who was fabulous through all of my treatments) told me that because I had a reaction to Taxotere - I would need to have my doctor change the premedication doses prior to my next chemo round. I am sure she made note of this in my file as well. But, she told me to follow up with my doctor about it.


So, I did. I kept asking about the premedication dose, that I was told it needed to be different for the next chemo round. When I finally heard back (you will see why I fired my first oncologist) I was told not to take any pre-medications (other than the emend - anti-emetic - the morning of chemo). So, being the good patient I was (and sadly, not understanding what the steroids were used for) I followed the directions given by my doctor and did not take any steroids prior to my second chemo round.


My nurse administered steroids just prior to my infusion (as they had done before) but, I did not have the proper pre-medications (the steroid pre-medication dose should have been increased, not eliminated based upon my reaction to Taxotere during my first chemo round). I got through the Herceptin okay and also the Carboplatin. But, very quickly after Taxotere was administered, I went into anaphylactic shock and stopped breathing. It was horrifying.


It happened so fast. One second I was feeling okay, the next I felt that same pain coming on and heat and then very quickly I could no longer speak or breathe. I was in a semi-private room, with one other patient. No one else. The other patient was listening to music with ear phones and so I could not get her attention. But, incredibly, her daughter came back into the room (she had gone on a Starbucks run for her mom). And, even more luck, she just happened to be a chemo nurse as her profession. She saw me in distress and quickly got my amazing nurse who literally saved my life. They stopped the chemo fast, administered a lot of steroids and luckily I came out of it. I never saw people move so fast and work so fast. I am so incredibly grateful for the fact that my nurse was so very competent and talented. She truly saved my life.


So, I wish the reason for steroids had been explained to me. If it had, I would have known that decreasing the dose (to zero) the day preceding chemo was a mistake.


When I met with my oncologist (the one who i later fired) my first impression was that he felt I was taking up too much of his time and that my questions were annoying to him.


I also did not like the answers I was getting. I did not like the fact that he made me feel like my questions were somehow irritating to him and that he felt I should just trust him and not question him about why I would be taking one thing versus another. But, I really wanted to understand what I was going to go through.


As a result, I started seeing an oncologist out of pocket up at UCLA. She is amazing. After the anaphylactic shock incident, my insurance offered to pay for the oncologist of my choice (at UCLA) and allow me to continue treatment locally in Orange County under her supervision.


After that I felt prepared and informed about my treatment. I was one of those patients that seemed to react to everything. I had to have very slow chemo infusions as my body just wouldn't tolerate it. So I know that I was not/am not the typical patient with the typical reactions to drugs. But, I really wish I had been informed of the reason WHY I was taking the steroids. If I had, I would have realized that I needed an increase, not a decrease, in the steroid dose prior to the second chemo round. It would have been nice to have avoided the anaphylactic shock experience :)


Fortunately that is past. But, it taught me a huge lesson - to ask questions, even if your doctor doesn't seem to be in the mood for it that day. You are the only person in your body and the only person experiencing what is going on in your own body. You have to listen to that.


My current oncologist is excellent. She relies on me for information about my symptoms and she treats our relationship almost like it is a team effort (and, it truly is a team effort: patients have to cooperate, listen and ask questions and doctors need to listen to their patients and be responsive). I am fortunate now to have the right kind of doctor-patient relationship.


I am still struggling with Tamoxifen. I had a hard time adjusting to taking it. But, I feel that I was well informed about the drug and about other possible options (lupron and arimidex).


I hope this (very long winded) answer is helpful.


Incidentally, I found my pharmacist to be the most helpful when it came to explaining medications, interactions and side effects. I loved my pharmacist! She was so helpful to me!

The first thing a loved one needs to realize is that they are no longer dealing with the same person they have known and loved their whole relationship. Once someone has been diagnosed with a life-threatening illness, their entire personification can change. They are no longer able to sort information as before. I am sure it is a coping mechanism, but the brain seems to check out. So everyone involved will have to relearn how to relate to this new person.

If you are the main caregiver, you need to be prepared to take over the role of eyes and ears. Bring a notebook with you to doctor's appointments. If you don't understand what is being said to you or your loved one, don't hesitate to ask for clarification. Write down everything because what your loved one hears and what you hear will be totally different. Patients really can only process bits and pieces and because most people are going to be dealing with terms they have never heard before, it is extremely important in those first few visitations with physicians to understand what is being said. Again, write it down and then you will always have it as a reference.

Also, a caregiver is going to find that their loved one will be more irritable than before. They will probably take their frustration out on you because you are their safety net. They know you will be there for them no matter what, so you are going to get the brunt of the emotions. When you feel that you are being overly put upon, give yourself permission to retreat. Bring in a friend to help for a day and take some time off. You can't be of help to the patient if you are too stressed too. All this lashing out comes from fear of the unknown. There are emotional stages to a cancer diagnosis, just as in a death, because in a lot of ways, it is like a death in that the patient has lost their reality as they knew it. You have too and there will be no time to categorize how to deal with it. I strongly recommend Elizabeth Kubler's "The Five Stages of Grief." It will be a roadmap to the emotional journey everyone involved will be taking.

If you are not the main caregiver, there are still plenty of ways to help. First, be a support system for the main caregiver. They are going through as many emotions as the patient and they are asked to carry the sometimes impossible burden of juggling their own responsibilities with the newfound ones from the diagnosis. They also need to vent and if they do, sometimes it seems like they are unfeeling or unsympathetic, but nothing is further from the truth. They are human and need to express their frustration, just as the patient does. Be that shoulder for them and let them know they have a safe place to fall if they need to.

Additionally, and I can't stress this enough, be supportive of whatever decision a patient may make about their care. You have not walked in their shoes and so you cannot say what is the right or wrong thing to do. Whatever you feel about it, unless it is supportive, keep it to yourself.
The first thing a loved one needs to realize is that they are no longer dealing with the same person they have known and loved their whole relationship. Once someone has been diagnosed with a life-threatening illness, their entire personification can change. They are no longer able to sort information as before. I am sure it is a coping mechanism, but the brain seems to check out. So everyone involved will have to relearn how to relate to this new person.

If you are the main caregiver, you need to be prepared to take over the role of eyes and ears. Bring a notebook with you to doctor's appointments. If you don't understand what is being said to you or your loved one, don't hesitate to ask for clarification. Write down everything because what your loved one hears and what you hear will be totally different. Patients really can only process bits and pieces and because most people are going to be dealing with terms they have never heard before, it is extremely important in those first few visitations with physicians to understand what is being said. Again, write it down and then you will always have it as a reference.

Also, a caregiver is going to find that their loved one will be more irritable than before. They will probably take their frustration out on you because you are their safety net. They know you will be there for them no matter what, so you are going to get the brunt of the emotions. When you feel that you are being overly put upon, give yourself permission to retreat. Bring in a friend to help for a day and take some time off. You can't be of help to the patient if you are too stressed too. All this lashing out comes from fear of the unknown. There are emotional stages to a cancer diagnosis, just as in a death, because in a lot of ways, it is like a death in that the patient has lost their reality as they knew it. You have too and there will be no time to categorize how to deal with it. I strongly recommend Elizabeth Kubler's "The Five Stages of Grief." It will be a roadmap to the emotional journey everyone involved will be taking.

If you are not the main caregiver, there are still plenty of ways to help. First, be a support system for the main caregiver. They are going through as many emotions as the patient and they are asked to carry the sometimes impossible burden of juggling their own responsibilities with the newfound ones from the diagnosis. They also need to vent and if they do, sometimes it seems like they are unfeeling or unsympathetic, but nothing is further from the truth. They are human and need to express their frustration, just as the patient does. Be that shoulder for them and let them know they have a safe place to fall if they need to.

Additionally, and I can't stress this enough, be supportive of whatever decision a patient may make about their care. You have not walked in their shoes and so you cannot say what is the right or wrong thing to do. Whatever you feel about it, unless it is supportive, keep it to yourself.

Statistics should be given to a patient when they are making treatment choices, ie... if you do lumpectomy with radiation as opposed to mastectomy, your chance of recurrence is X. There are SO many choices when dx'd in most cases thanks to early detection. All medically sound options should be presented with the statistically differences so the patient can make the best decision for themselves. (chemo or not, too) To start quoting survival rates for a specific stage of cancer or a rarer type of BC, not unless pressed by the patient for information. My two cents! AnneMarie Statistics should be given to a patient when they are making treatment choices, ie... if you do lumpectomy with radiation as opposed to mastectomy, your chance of recurrence is X. There are SO many choices when dx'd in most cases thanks to early detection. All medically sound options should be presented with the statistically differences so the patient can make the best decision for themselves. (chemo or not, too) To start quoting survival rates for a specific stage of cancer or a rarer type of BC, not unless pressed by the patient for information. My two cents! AnneMarie

don't be a good patient which is a submissive sufferer. be a respant or responsible participant. and on my web site read immune competent personality. www.berniesiegelmd.com don't be a good patient which is a submissive sufferer. be a respant or responsible participant. and on my web site read immune competent personality. www.berniesiegelmd.com

PreparedPatient your answer was excellent advice, and I think the article is a very helpful resource. I'd add that as physicians, we're used to hearing personal, intimate and embarrassing information - if you can't ask your doctor, who can you ask? We're here to give support and advice, not to judge. It's important to get answers to your questions. And I agree - if you don't feel comfortable opening up to your doctor, it's probably time to find a new one! It can be hard to talk to doctors about our symptoms if they’re embarrassing or deeply personal, if they are about sexual activities or concerns, or if you fear you may be judged or criticized. But doctors deal with intimate personal information all the time. Whatever your problem is, the doctor has probably seen or heard it before. If you really can’t talk to your doctor about your problem, it’s probably time to think about finding a new doctor who you can trust.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm

Be clear and persistent! A recent report in the New England Journal of Medicine found numerous studies showing that doctors often downgrade the severity of patients' self-reported symptoms, particularly when it comes to medication side effects. This is case when keeping a symptom diary can come in handy—specific data can help both you and your health care team.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm
There are a couople of things I might add to this, having been a nurse.

1. Ask yourself how you will know when the doctor IS taking your symptoms seriously. What will you see or experience when that happens? Are you concerned you aren't getting proper treatment or enough treatment, or are you wishing for some compassion and emotional support from your doctor? Expect that you may not get 100% relief from all of your symptoms all of the time, but don't suffer in silence because you fear your doctor's wrath if you tell him about that pain or nausea again.

2. Doctors and nurses have a hard time quantifying how much a symptom is affecting a patient. That's why there is a scale for pain, for example, that runs from 0 to 10. Health Care professionals use this to try to create a level playing ground on which to communicate. Be as descriptive of the symptoms as you can be and let the health care professional know how the symptom is impacting you. "The pain is so bad I can't cook dinner for my family." "I'm so dizzy I can't walk down the hall when I need to urinate." These sorts of descriptions will let the professional know that it isn't just an annoyance, it's impairing your ability to function.

3. Not every symptom is related to what the health care professional may be treating you for. Sadly, our medical system is structured into silos; oncology, family medicine, internal medicine, gastro-intestinal, proctology... you get the idea. Specializations are great from the standpoint of getting expert care, but they don't help when patients have symptoms that might be outside a treating specialist's area. In cases like this you may need to ask, "Do you think this is related to what you are treating me for, or do I need to see a different sort of doctor?"

4. When people become anxious (which many people experiencing cancer diagnosis and treatment often times can), they may become hypersenstitive to what the body and mind tell them is going on. This is a natural effect of the fight/flight response that can be triggered by an accumulation of stress. Not to say that you don't experience the symptoms, but they may not be an indicator to the doctor of an urgent problem that needs to be treated. It might also be that treating a particular symptom might interfere with other treatment that is more urgent. Tell the doctor about your symptoms and then tell him what you just understood his response to be. Then ask if together you should alter the care you are receiving.

"Doctor, I feel pressure and pain at about an 8, especially when lifting. It's making it difficult to pick something up and move it."

"Well, I don't think that's anything to be concerned about. You should be resting. I'll see you next week."

"Doctor, I understand that you don't feel it's anything to be concerned about, but I brought it up because I AM concerned. Now, do you think there is some way we can decrease the pain without interfering with my treatment? I'd really like to be able to do as much as I can around the house. It helps me to feel normal."

5. Doctors, like any other experts, sometimes forget that their patients don't have the same level of knowledge about their conditions and need to be clued in to what they can expect and what may be "normal" symptoms/side-effects that are experienced during treatment. Keep asking and consider approaching other health professionals until you get an answer that puts your mind at ease. But be careful you don't end up doctor shopping until someone gives you a prescription. "Too many cooks spoils the broth." All your health care providers need to be aware of your medications and other treating physicians so that they don't end up over medicating you or prescribing treatment that is contra-indicated for another health problem.

• Try using descriptive words. Is your pain dull, throbbing or piercing?
• Be specific about how your symptoms affect your daily life. Rather than “I’m tired all the time,” try “I’m too tired to walk to the mailbox” or “I’m sleeping for 12 hours a day.”
• Keeping a diary of your symptoms can help you to be specific and accurate about the frequency of your symptoms.
• Talk about what you’re feeling, not what you think your diagnosis is.
• Try talking about your symptoms in different ways. Not everyone describes symptoms the same way, and you may have to try several times to get your story across.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm
• Try using descriptive words. Is your pain dull, throbbing or piercing?
• Be specific about how your symptoms affect your daily life. Rather than “I’m tired all the time,” try “I’m too tired to walk to the mailbox” or “I’m sleeping for 12 hours a day.”
• Keeping a diary of your symptoms can help you to be specific and accurate about the frequency of your symptoms.
• Talk about what you’re feeling, not what you think your diagnosis is.
• Try talking about your symptoms in different ways. Not everyone describes symptoms the same way, and you may have to try several times to get your story across.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm

• Share a basic description of your problem—one to two sentences is ideal.
• Tell them when you experience symptoms and how often they occur.
• Let them know if anything makes the symptoms better or worse.
• Tell them if you have ever experienced the symptoms before, and under what circumstances.
• Tell them if anyone else in your family or workplace is experiencing the same symptoms.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm
• Share a basic description of your problem—one to two sentences is ideal.
• Tell them when you experience symptoms and how often they occur.
• Let them know if anything makes the symptoms better or worse.
• Tell them if you have ever experienced the symptoms before, and under what circumstances.
• Tell them if anyone else in your family or workplace is experiencing the same symptoms.

For more advice about talking to your providers about symptoms, see our full-length feature article: http://www.cfah.org/hbns/preparedpatient/Vol3/Prepared-Patient-Vol3-Issue8.cfm