dfourer Posted August 3, 2008 Share Posted August 3, 2008 My relationship to my doctor is difficult. I have to remind myself that nothing about having stage 4 cancer is easy. So, I want to hear other people's stories about working with their oncologist. I feel that I don't get enough medical information from my doctor. Apparently she doesn't believe in talking about medical details with patients. Sometimes she apparently doesn't trust me to follow instructions. Sometimes I don't trust her--to tell me the whole truth about my condition and my treatments. She does seem to have respect for me and my ability to survive, and I have respect for her scientific expertise. She is assistant professor at the medical school. We've been "together 4 1/2 years now. If she can't get objective data on my side effects from a blood test or an image, she wants to cover it over with a pain pill. She can get furious if I question the long-term safety of a drug she wants me to take. She offers psychological counseling or mood-altering or psycho-active drugs that I always turn down. When I want more information about my condition, I have to pin her down with specific questions, and then she talks in medical abbreviations and scientific jargon that is hard to understand. She talks too fast. She never volunteers an explanation of a medical condition. I look everything up when I get home, or before going in for an appointment. I think she is good at science but not so good at reading a patient. The nurses are better at telling if what I feel is serious, or just uncomfortable. The nursers have this instinct, they can read a patient as well as a blood test. They also get to know me better. During the infusions, the nurses talk and listen and really get to know me. Actually, we laugh a lot. We need to because there is a lot of reason for tension. If I met the nurse on the street, I would definitely stop and talk and say if I'm feeling well. With the doctor, of course it would be a little strange. Sometimes we do a dance around treatment decisions. She wants me to do something and I have made another decision. It's very awkward. We communicate through the nurses or the resident doctor (a doctor getting certified in oncology, studying under my doctor.) She is "brainy" and not naturally social, as far as I can see. That's not all bad. She has a wild side of her personality that I don't see much of, but it's reassuring to me to think that she would be a difficult patient if she were one. I've heard that she has a lot of admirers, and I wonder, am I the only one who has this rough experience? I see people in the waiting room who have traveled a long way to get a 2nd opinion here, or get treatment. You may wonder why I didn't get a new doc long ago. I got 2nd and 3rd opinions some time early in the process, and saw the best known and most revered people in the field. I wondered how much time they can spend with an average patient, being so well know. They recommended my doctor and agreed with the treatment plan. Other factors. I get immediate attention when it's important. That may not happen often, but I know I won't be kept waiting when time can make a difference. Also, the clinic is run very efficiently. I always check to make sure I get the right medicines, but in 4 1/2 years I've never caught a mistake. I'm a long time survivor. Some right calls were made. Truth is, we face some impossible choices. We are going to be unhappy some times. Like I said at the beginning, nothing about this is easy. I value the connection I have with my doctor, such as it is. She has put up with me this long and knows what I am capable of (I'm the guy riding his bicycle an hour each way to chemo appointments.) I wonder what it's like being an oncologist. How do they cope with all the death and dying? How close can a doctor get, personally or emotionally? I hope this post is not too long, and look forward to reading your experiences. Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 3, 2008 Share Posted August 3, 2008 Can you get a copy of your record, tests results, xrays, history,progress notes. It's your record. Perhaps that will help you. Donna G Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 3, 2008 Share Posted August 3, 2008 hummmmm! I can answer one of your questions. The one on "how do Onc Doc's deal with death, etc," That one you will have to ask an Onc Doc. In most cases from Onc Doc's that I have worked and dealt with, they look at us patients as (cancer) and they seperate the human from the disease. It's there way of coping. But you could go and ask Dr. West that question. He's an Onc Doc. I faciliate a Lung Cancer Support Group and over the years 100's of people have said to me, " Connie, how do you run a LC Support Group knowing some of your members will die?" The answer to that for me is, I/We are doing this support group to offer support. When we lose a memeber/friend I cry I feel sad, I feel anger and yes it's hard. But without this group where would so many of them be that need support and want some comfort from other survivors. I have lost MANY WONDERFUL Friends and Family to this disgusting disease, but as the saying goes, It's a hell of a job, but someone has to do it! I've had members that have passed and said to me, don't ever let this support group go away. So as long as I'm still walking, I will make sure my/our support group is still up and running. As for your doctor, you have to decide do you want a Doctor with a personality or do you want a doctor that has scientific expertise or do you want a good looking doctor, etc.,etc,? There are many doc's that have it all, but some of them don't. You need to pick what works for you. If it were me, I would find a doctor I can work with and we would be a team together. I want them to be a GOOD & SMART & AGGRESSIVE DOCTOR as well as nice and easy to talk too. I don't like having to make a job out of getting proper care. I just want to keep it honest and simple. In my case, I've had them all over the years. Some good, some not so good, some very poor. When I find one that hits my comfort zone I make my choice. I gotta say, from what you say about your doc, she and I wouldn't make it to first base. But, that's just me! As far as treatment choices, most Cancer Clinic's and doc's offer the same kinds of treatments. That is if you qualify for them. Most of the treatments today are the same, it's just a matter of finding which one works for you. Good luck. Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 3, 2008 Share Posted August 3, 2008 FRom my point of View.... A caregiver survivor! I had no qualms about our Oncologist and his back up Doctor is one of top 20 in US! we got along great and I respected his ideas and opinions. He always answered all of our questions in plain English that we had. Made time for us when he could. I have no regrets about his care for my late Wife Deb. HE was a s shocked as I was at her passing! I believe that as patients we do have to hold our doctors responsible for OUR care. We usually have one specialist and that specialist has a lot more patients.. Not neccesarily PATIENCE though!! we have to seek our doctor based ion how comfortable we are with their care of us. Not like Connie said Looks or popularity or anything else. OUR LIVES ARE IN THEIR HANDS!!!!!!!! Stirring things up is good for the soul and the mind. Sometimes being a sheep is not the best thing to do. Question everything and get answers and do not follow along with the usual lines that doctors give us or answers you do not understand. Make them explain things so you do understand them! I must say that I do remember you also and has been a while since we have heard anything. THat is ok though I still remember you and thats the important thing. I admire you for riding a bike an hour each way to chemo treatments each way. I would be happpy for a half of that and am getting there I have to add. Thoughts and Prayers and Keep us posted on things. Oh, And NEver apologize for any writinggs Here! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 4, 2008 Share Posted August 4, 2008 David, Interesting post, challenging to think about and respond to. Would I be with my doctor based on our clinical interactions almost ten months down the line if in the beginning people working with her hadn't told me how great she is? I was told she is the head of medical oncology at MDACC in Orlando and completed a fellowship at MDACC in Houston (Time magazine named MDACC in Houston the #1 cancer clinic in the country three years in a row). Her resume that can be found online is impressive. Everyone you say her name to at MDACC describes her in glowing terms. Our relationship isn't perfect but she does most everything right. She gave me six rounds of carbo/taxel/avastin and talked me into avastin maintenance. After the 6 + 2 rounds, I was in remission. When I have scans, she sees me the same day and sits and explains it with the CD in computer giving me the visuals. She waits until I ask the hard questions before giving me information that is difficult to digest. She respects my feelings, when I said "You don't understand, come November I'm going to want more than a six-week break." Her reply (even though I know she'll be happy if I decided to stay on Avastin maintenance) was, "well, if you're talking about the Fall, I'm o.k. with that." Damn, I was impressed. So far I guess she sounds about perfect and in many ways she is. But she is very reserved and I am definitely not. She sent me to Dr Mary once because Dr Mary is an oncologist with more experience with Avastin's blood pressure issue that I was suffering from big time. When I was a counselor, people used to tell me it wasn't like going to a shrink. It was like sitting in a livingroom chatting with a friend. That's how I felt with Dr Mary. Dr Tseng is kind and caring but not real warm and fuzzy and doesn't appear very comfortable socially with patients. She also tends to say little when I'm bristling about something--I'm sure getting into a conflict situation with your cancer patient isn't a good idea anyway! Boy David, I realize now that a relationship with an oncologist is a complicated one. Bottom line for me, I guess, is that I trust her with my life. If you're still with yours after 4 1/2 years, my guess is you trust her with your life too. Isn't that what's important. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Yorktown Linda Posted August 4, 2008 Share Posted August 4, 2008 David, My oncologist is the best I could hope for. If you ever move to Westchester County, NY let me know. He also has a practice in NYC. I was introduced to him in the hospital by my first surgeon. My then internist didn't think I needed an oncologist before the surgery. She is an ex-doc as she mostly treats lyme and didn't do much follow-up on my cancer. My onc came to see me every day while I was in the hospital. He said he was going to call Memorial Sloan Kettering (MSKCC) to ask some questions as he doesn't see much lung cancer, mostly breast. He then called me the next day to say that he hadn't reached the man he wanted to speak with but didn't want me to think that he got bad news and was avoiding telling me! The first time I went to his office, my immediate feeling was how calming it was. A lot of thought went into the design and furnishings. My husband and daughter who accompanied me had the same reaction. I saw Dr. Schneider every 3 weeks for over a year without being billed. As I was not on chemo, he said he wasn't treating me and therefore wouldn't bill me. He did spend lots of time with me. He gives me copies of all my blood test results and Cat scans. He also enters them into the computer at MSKCC -- he volunteers there once a week -- and brings me copies of their pathology reports, etc. My second surgery was at MSKCC and he also visited every day. Once I was out of the hospital, he fully discussed his proposed chemo with me, told me what the doctors at MSKCC were saying, and showed me their email interactions. My doctor flew to Italy for a cruise the day after my 3rd chemo. He called me from Italy to make sure I was doing okay! I can't enough about how great he is. Medical knowlege is good and that's what I get from MSKCC -- 2nd surgeon was there and I have consulted their oncologist in person at my dr's suggestion. However, I can't imagine making this journey without my wonderful oncologist. It's not just the medical expertise I need, but also his warmth and caring. I feel like I am a person to him and not just a woman with cancer. Hope you can find someone like that. Linda Quote Link to comment Share on other sites More sharing options...
dfourer Posted August 4, 2008 Author Share Posted August 4, 2008 "Yorktown Linda"]David,My oncologist is the best I could hope for. Hope you can find someone like that. Linda I like reading about people who get along well with their doctor and feel that they are getting everything they need. My own situation is a work in progress. Keep the comments coming. Thanks. Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 4, 2008 Share Posted August 4, 2008 Questions and debates are stimulating for The Mind, David!! Hang in there! Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 5, 2008 Share Posted August 5, 2008 Excellent topic for a post. I think being a medical oncologist has to be one of the more difficult jobs there is . My job is a wussy job compared to that. They are all different as are their patients and they dance a fine line in determining how to relate to a patient effectively. I count myself lucky that I have an excellent relationship with mine and wouldn't trade her for the world. She puts up with all my questions and kookiness and I actually have some fun when I visit her. She actually "gets" me which I think is so important. Having a good doctor/patient relationship is so important but probably not 100% achievable in all cases. Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 5, 2008 Share Posted August 5, 2008 David- My first onc was such a sweetheart. He used to tease me and call me his "high maintenace patient" because I couldn't wait for my scan results. He would, on his own, call me from his cell phone on the way home from work the day I got my scan and tell me the results so I wouldn't have to wait till the next day!! I could tease him and I made him blush a couple of time but he was a sweetheart. When he moved to Texas, he gave the choice of two oncs at the Clinic. I picked Dr. Mekhail who is the Chief, Lung Oncologist there rather than the other doc because the other doc had a PA who I had fired and refused to see again. Dr. K had warned me that Dr. Mekhail would not have the time to spend with me that either he or the other doc had. And it was true. Hes a really nice guy and very personable but he just is so rushed all the time. I feel like a number. I only see him every third or fourth chemo - the other times I see his PA.But - since things are going good for me - I guess I will keep him!! As far as how can an onc be an onc - when I was first diagnosed, my g/f Liz who takes me to my chemos asked Dr. K. how the heck can you do this because you lose so many patients. He said he also works with colon cancer patients and that even 5-10 years ago, you really didn't have much of a chance. But with new medicines and technology, he said "I am actually saving lives, too". Makes sense if you think about it!! I agree about the part of nurses being a great asset. My cousin is one of my chemo nurses and they are all great and actually give me more info sometimes than I get from the doc or the PA. Wishing you continued good luck - Stage 4 and over 4 years - WOW!!! You are my hero!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Muriel Posted August 5, 2008 Share Posted August 5, 2008 When I was dx'd, we lived in northern VA. My surgeon (for both surgeries) was highly respected, but really unlikeable. The pulmonary specialist was ok. I thought the Onc was great. However, it would have been helpful if he had told us he was watching something in the upper lobe of my left lung. A month and a half before we were planning to move to central FL - and after selling our Fairfax home and buying one here - I had my last CT before moving. Within 3 weeks I had surgery and the move went on as planned. Difficult, tho. Now I'm on my 3rd Onc and 3rd pulmonologist here. The first just strung us along without any answers re: chemo. I did finally start chemo with him and 6 weeks later was looking for a new Onc. Went to one my friend here recommended. She had really liked him. We soon started calling him "Dr. Gloom and Doom." After 15 months or so, he was concerned about a PET scan with a SUV of <2. Ordered a CT scan and then was very, very slow to give me the results. While waiting I realized that if it had returned, I couldn't do chemo with that group. So, I got the results, gave him a bad time about waiting so long to tell me and said good-bye. Three people in this group did/do go to my current Onc at MDACC-Orlando (Judy in KW, WendyR's husband, and Laban's husband). I agree with Judy's description of her. I'm confident that she is very knowledgeable, ethical, etc. so I feel ok about seeing her. With each Onc change, I also got a new pulmonologist. The one in VA was ok. Hated the first one here. The 2nd one I liked, but he moved to the far side of the other side of town. People this far east of Orlando just don't go that far southwest. I like the one at MDACC. I asked my PCP how close I was to running out of Onc.s here and he said there are still a few groups that he could recommend if needed. Muriel Quote Link to comment Share on other sites More sharing options...
sunnyside Posted August 6, 2008 Share Posted August 6, 2008 First, to your question about how close a doctor can get, I think I can speak to that as a doctor. Professional detachment is a very important quality of any physician. This doesn't mean a physician shouldn't be empathetic, but it is impossible to make good, objective decisions about someone you are emotionally close to. You will always under or overtreat because you are invested emotionally in what happens with that person. It's why no doctor worth their salt will treat themselves or their loved ones. Professional detachment is also the way that oncologists deal with death and dying. Even more than that, there is a lot to be said for the ability to help someone achieve a death with peace and dignity. When I was practicing internal medicine it was one of the more gratifying aspects of my practice. My oncologist has only been my oncologist for 5 months but so far I am very satisfied with our relationship. I am not the easiest patient in the world. Most times he caves to my requests - like the time that I asked him to go ahead with chemo even though I had a temp of 100.3 because I was sure it was a viral infection and not bacterial or the fact that he orders my liver function tests every 3 weeks just because I want him to. I couldn't argue him into going ahead with my chemo when my white count was low. He speaks to me in doctor jargon because that's my language, too, so I don't know how he does with other patients on that front. Early on he was happy to speak to an old friend of mine who is an oncologist where I trained and to my second opinion oncologist at Memorial Sloan Kettering - no ego issues there which is very important to me. Although he has given me any information I've asked for, I believe that patients do best when they become the world's #1 expert in their own disease and so I have spent a lot of time reading so most of what we discuss at this point is nuances - those things about which you might get 5 different opinions from 5 different oncologists. Overall I want my physician to be smart and well-trained, keeping up with the current science, not too impressed with him/herself and respectful enough to speak truth to me. I know from my own personal experience how little time they have with each patient and so I always have my questions lined up when I go in so he can zip right through them. I don't need emotional support from my doctor - that's what my family are for - but I don't want my doctor to be cold and unapproachable. I view my doctor as a business partner and expect that I'll be treated with the respect and competence typical of that sort of relationship. Regarding your situation about the dance around treatment decisions - that's always a tough one when the patient comes to a different conclusion than their doctor. The doctor has made a recommendation that they feel is the single best way to achieve the best results for the patient and having the patient decide on something else makes them nervous that that best result might not be achieved. There may also be ego issues involved. When I'm not on exactly the same page as my oncologist I make sure he understands my issues and priorities and ask him to work through WITH ME intellectually the points where we differ. We have always been able to come to a mutually agreeable place. Again, it's important to me that I feel like he is a partner to me in this process so I give him the same respect and deference I want for myself. Overall, it sounds like you've had a pretty good experience with both your doctor and the clinic and you've certainly gotten results that many of us are crossing our fingers and hoping for with all our hearts. Quote Link to comment Share on other sites More sharing options...
dfourer Posted August 6, 2008 Author Share Posted August 6, 2008 When I'm not on exactly the same page as my oncologist I make sure he understands my issues and priorities and ask him to work through WITH ME intellectually the points where we differ. We have always been able to come to a mutually agreeable place. This is one of my biggest contentions. I want my doctor to discuss with me intellectually, logically, the points where we differ. She brushes me off. I actaully have a pretty deep knowledge of biology and medicine, and getting better. That has helped me, especially when I really have to dissagree. We usually, almost always, agree, but the dissagreements don't get resolved in any sense. I have a BS degree in biology. I did a lot of background reading when I was diagnosed. I prepare well for doctor's appointments, often obtaining copies of peer-review publications on relevent topics. Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 6, 2008 Share Posted August 6, 2008 You know what the problem might be my dear, you might be more prepared then she is when you go for your appointments. Some doc's are intimidated with patients that know to much! I sure am glad I had an Onc Doc and now ALL my doc's that I can work with and talk with and be on the same page. It sure gives me great comfort to have doctor's like that. I wish the same for you. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted August 7, 2008 Share Posted August 7, 2008 David: My med onc and I get along splendidly and have from the beginning. In my opinion the main reason for this is that I think he's brilliant and the feeling is mutual. Seriously though, I agree with Connie; i.e., it's my guess that your own "brilliant" med onc is probably intimidated by the fact that you're also "brilliant" (you are well read and have researched the subject of your condition and various treatments so thoroughly that you have valid, logical responses to her recommendations). I have also been told by a number of med oncs that most patients don't want to make their own decisions, and basically just hand over all decision-making to their docs. These are the same patients who don't read about their condition (they don't need to if they're going to let their doc decide everything). That is, of course, the other end of the spectrum, with most patients falling anywhere and everywhere in between. These same med oncs have also told me that one of the most difficult (and important) diagnoses they have to make initially is the determination of what each patient "really" wants in the way of knowledge and decision-making. Clearly, this determination by the med onc must be accurate in order to develop a positive and effective relationship with the patient, and it seems to me that no matter how "brilliiant" your med onc may be otherwise, she suffers from a real gap in her education in this area. Affectionately, Carole Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 7, 2008 Share Posted August 7, 2008 Once again, Carole cut to the very center of the issue -- Connie, too. But David, this relationship has survived 4 1/2 years, and you can't argue with success. I think all the positives you listed outweigh this one negative, which, for all I know, could be spurring you both on and contributing to that success! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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