Lets Talk About Oncologists
What do you look for in an oncologist? What is it about your onc that you like?
Why I ask: My oncologist and her nurse are retiring soon. They've been with me for 10 years since I was first diagnosed. I got kinda spoiled, they were so good to work with in so many ways and I will miss them immensely. They are both over 70 and I have to say, they knew their stuff and I was always given the most current medical treatment options. The fact that I'm still here 10+ years later is of course due to many factors, but one of them most certainly is their medical guidance and support.
I saw them for the last time this month (tearful goodbyes, I'm still processing it). My oncologist said the cancer center has two other women oncologists. One is more experienced having been there longer and treats numerous types of cancer and one is younger but specializes in breast cancer. Retiring onc says it's either/or, she says they're both good.
For me, best case scenario would have been have an option for a more experienced onc who also specialized in bc. Since that wasn't available, I said I'd like to see the younger one who specializes in bc. (I am nervous with the change.)
This got me wondering what those of you on the boards would do.
How many of you see an onc who specializes in bc cases? Or do you see one who takes care of several different cancers?
If you had my choices, which would you pick?
I hadn't specifically mentioned I preferred a woman oncologist, yet I think do. Any thoughts on female/male oncologist differences, pros or cons?
What else do you look for in an oncologist?
I would love to hear your advice and insights. It will be three months until my next appt and I'll meet the new onc then.
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I have a female oncologist and she treats all types of cancers not just breast. I might look for speciality if I had a more complex case of breast cancer but I have to say my current MO is very thorough and on top of all facets of my health. I think that is what I appreciate the most about her, we discuss everything that is going on and she and her nurse are excellent at coordinating care. I am sorry the team that carried you through is retiring but sounds like you were so blessed to have seen them. I do like having a female oncologist because she is on top of all the challenges hormonal therapy presents and is genuinely concerned that I feel the best I possibly can.
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Divine, my MO from MD Anderson is in the Breast Center, so all of them specialize in BC, however my particular MO specializes in HER2+ and is very involved in Brain mets and related trials. That is very important to me but on a personal level, I need the MO to be part of my team, not a boss and firmly grounded in reality. My MO has never told me how much time I’m might have left, she knows that she doesn’t know, at least at this point as I am stable but she doesn’t sugar coat things either, which I prefer, I want honest but hopeful.
My MO is young, maybe 30, so she’s still very enthusiastic about research and possibilities and I need that attitude vs someone who’s been watching people die for the last 40+ years. The other thing I like about her is that when i discussed moving out of town, she asked me to please keep her as my primary MO and come back for quarterly scans, etc. as I seem to be a great fit for her professional interests by denovo, subtype and oligo mets locations. I don’t feel like a lab rat but I see that she’s keen on trying out the latest and greatest on me when appropriate.
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Divine, it is hard to make the change. And I don't really know what to say. Sometimes I think it is a crap shoot. You don't know who you are really going to get until you are with them and maybe have some progression or some bumps in the road to see what the new onc will be like.
My story-- My first MO was wonderful. Male. Never met him before, as there was no cancer history in my family, so no dealings with cancer doctors. He held my hand as he told me of the Stage 4. And sat with me for me to ask questions (though at the time I was not as well versed as I am now and didn't really know what questions to ask). When he announced he was moving from the area (1 year into my MBC) I hated it. There was a female onc in the same office so I moved my care to her. She was ok. Seemed smart. Not as great of a bedside manner. Then, when we had a disagreement about how to handle my low ANC, and she told me to stop reading and just do as she says, I knew I needed to change docs. I chose my current MO because I had went to her for a second opinion at the beginning of my diagnosis, so I had my records there from before. She is ok. Not a BC specialist, sees other cancers. She is an "Associate Professor"--says on her name badge. This is a larger cancer center 2 hours away from me. I go there because they have access to clinical trials, tumor board, more options. So, overall, I like my current MO, but more so I like the larger center that can offer more than my local, rural office. I have been with my current MO for 1 year and she is ok, but we do not have a close relationship. More just a business relationship. When I planned on moving my care to her, I did ask if I could be a partner in my care and would she be offended if I read and researched---- she said that was ok. That was the clincher for me.
For your situation, the older more experienced but not BC specialist OR the younger but BC specialist---- I think you have to decide what you want in an MO. What is important to you. So one is older and one younger. Older is good, more experience. Younger one may be willing to try the newer treatments or more up to date on the latest news. Think about what you want in your care. Can you meet with one of them and ask some questions then meet with the other one and ask them those same questions. Interview them. But, like I said, you may not really know if you got a good one until the test of progression or a complication arises.
Sorry I could not be of more help. Good luck and keep us informed.
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Thanks for sharing your experiences. I gave both the onc and nurse each a small gift and card with my sentiments. I definitely knew how fortunate it was to have had them and told them that. One thing I especially liked was they both had a way of delivering not so good news in a calm, unalarming manner which I appreciated. They always offered hope but never in a perky unrealistic way and survival times were never mentioned. I remember the day 10 years ago the onc gave me the metastatic breast cancer news and said "with treatment you could live for years". I have always loved her for that open-ended sentence.
Illimae, I like the idea of a younger onc having enthusiasm. Your comment about needing your onc to be part of your team and not a boss is a very good point, and I will ask for that kind of patient/doctor relationship when I see the new one. Candy, your post was very helpful even if you think it wasn't. You, too, mention partnering with your current onc and this will be important to me. Rah, coordination of care is important and I hope the new onc does that well.
My retiring onc was married to a surgeon and was the mother of three boys before she ever went to medical school. She had confidence she could do it and her husband encouraged her to go for it. At the cancer center, she and her nurse have been a team for over 21 years.
Would you give any credence to online reviews of oncologists?
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For online reviews, I find them useful if the comments are factual and not just feelings. The onc or the reviewer could be having a bad day, so I take that into account.
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Divine, I can imagine this is an unsettling time. It's the 20th anniversary for my oncologist and I. But staggering really and I know I would be gutted if he decided to retire or move away. Thankfully I think he is a couple of years younger than me so too young to retire just yet.
You've received some good advice. My MO also shies away from any discussion of how much time I have. In our initial conversation he said he expected me to do well for a good long time. Bit vague but I've learned not to ask. He doesn't know and is doing his darnedest to keep me going.
I do feel we have a partnership. He is completely open to me sending him research articles or flipping him questions at any time. If he doesn't have the answer he is very quick to refer me to someone who does so he also does a good job of ensuring I have coordinated care. I think one additional question for you to ask is with regards to accessibility. My MO provided me with his email address so that I have direct access at all times. I am careful not to overuse that privilege but am ever so grateful to have the ability to reach out directly rather than going through “the system".
Ultimately, I feel my MO and I have built a strong relationship based on mutual respect. For me, that's the key.
Edited to add, my MO specializes in BC and multiple myeloma.
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When I went Onc Shopping I had a pretty wide choice but my requirements were to be associated with a research hospital, to have research/publications interests, to be breast cancer focused, and even better, to be MBC focused. I could have gone with the number 1 breast MO in the UK but instead I chose a female colleague of his (she is also hormone cancer focused, so I mean, really getting into the hyperspecialisms here). Originally I wasn't bothered one way or another about male vs female, but when it came down to the choice I figured, as others above, there is something inherent a woman would understand about this that a man just isn't going to get, I don't care how long they have been doing this. Also, the big gun doctor types may not be as accessible and since this isn't super complicated right now, I figured a close colleague working in the same research lab would be able to knock some thoughts around so indirectly I would benefit anyway, if that makes sense?
I know there are some cancers where I believe they are somewhat similar to BC, especially for research purposes, so you will have some oncologists pick up multiple cancers. The first MO I was assigned was actually a glioblastoma researcher, but working under the head honcho for TNBC.
Overall I think its turned out pretty well - I really like my breast nurse(s) (I still haven't seen everyone's full face yet and can't remember what all the different dress colors and belts mean for status), they are both actively encouraging me to call in if I have any questions or issues, and MO is an excellent listener and picks up on what I am saying and follows through. It definitely feels like a partnership and I have been very pleased with the switch (other than the usual timing mess at clinic but that can't be helped). Frankly I think she likes my more scientific questions and that I am an active participant in my treatment.
With your choice I would probably go for the younger enthusiastic BC-focused doctor. She may be more willing to try things "off the books" and away from flowcharts and diagrams, or to reach out to colleagues with questions, stay abreast of changes and trials.
Could you split the difference a few ways? For example, chat with both of them for a personality fit first? Or,if you want to select the younger doctor anyway, potentially get a second opinion doc/location identified in advance?
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Divine,
I can only imagine how tough it was to say goodbye to them. I’m fortunate in that the MO who was involved in my first diagnosis is still my MO. He was the one who I reached out to when I started having issues with neuropathy and felt like my PCP was giving me the run around. He took me seriously, ordered the MRI and found my bone mets and tumor pressing on my spinal column (thus the neuropathy). The neurosurgeon told me if they had waited 1 more week to operate, I would have lost the ability to walk.
I appreciate that my MO takes me seriously. He has known me for several years and knows I’m not a patient just looking for pills. He told me that when I reached out to him about my neuropathy concerns, he knew something was up because I am not one to complain.
Aside from bedside manner and treating our relationship as a team, I would look for any potential MO to have a relationship/access with a major cancer center or teaching hospital so that I would have access to specialists and/or clinical trials if the need arises. The relationships these MOs develop with others in the firlcan be invaluable to those of us dealing with stage iv.
Age/experience wouldn’t mean as much to me as a genuine love for their work and a desire to overturn every rock for all/any treatments that might help me fight this beast.
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I switched mo’s early on. My first mo was experienced, up to date on matters and the head of the oncology department. Unfortunately, he didn’t seem to acknowledge that I was an information gather who asked questions and wanted more than superficial answers. He was actually a bit dismissive so I knew, despite his considerable expertise, that we were not a good match. My ro recommended a new mo and even set up an appointment on the spot (I belong to an all inclusive HMO so doctors can see all of your records and make appointments with a few clicks). She turned out to be a great fit and I saw her for 9 years before she had the nerve to move back to Hong Kong to care for her elderly parents (I’m joking. I know she needs to be with them). I have only seen my new mo once but so far so good. For me, assuming profesional qualifications are good, being able to develop a relationship of mutual respect is very important to me because we will have a closer relationship with our mo’s than we do with most of our doctors.
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I was in your shoes about 5 years ago when my oncologist a woman who was 70 yo but looked 50 had the nerve to retire to Florida from Minnesota. My husband was a professor at the University of Minnesota responsible for teaching 2nd year med students. My oncologist stood out to him, so we met and she has been a good fit for me.
I do think she can get a little nervous if my now-retired-husband comes along to appointments. She is quick to ask him, what do you think? But I think she lacks confidence around him so I ask him not to come. She's Board Certified in Hematology and Oncology so she is smart and has been an MD for close to 20 years.
Good luck. I hope you find a good match.
AmyQ
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Divine, I think specialization is a top priority, so I would choose the breast cancer specialist. There is so much research going on, so many trials and conferences. It is a lot to keep up with and I think it is pretty important to have an onc who keeps up with the breast cancer scene.
I prefer a female oncologist. I find it easier to talk with female doctors, and I do not have the added stress of feeling embarrassed. And they understand hormonal stuff on a personal level.
As far as age, I'm not sure how much that actually influences their approach. The two senior bc oncs at my cancer center are older. One does seem a little old-fashioned (for example does not like using some genomic tests) but is considered a fantastic doctor by everyone. The other is right on top of everything new, and also highly respected. The advantage with both is that everyone looks up to them, and if they want something for their patient, they get it. They have confidence.
Listening to other patients, if there is a local support group where you can meet them, could be helpful. But be sure to ask what exactly why they do or do not love their oncologist. Once a local support group member told me she really liked her onc, so my relative chose that onc, and at the first (and only!) meeting we realized that doctor was worse than horrible. I keep my ears open. There is one young onc who came to speak to our support group (she earns points for doing that), who praised the two senior oncs for creating a culture of cooperation and consultation among the doctors that serves patients well, and I have her in mind for my next onc if my current onc retires.
What is really good is if you can meet them both before you decide. Talk about how you see your respective roles and in what ways you want to be involved in your care, and what kind of communication you prefer. My first onc at my previous institution was said to be a really nice guy. But it turned out he was, as he described himself, "a visual person". Uh oh. I am super-verbal and need to talk and discuss. And he would not read and discuss any scientific literature I brought. And he would not offer advice on important decisions, copping out by saying, "It's up to you." Eventually I fired him.
Also, consider if the oncologist's nurse is someone you can work with.
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I look for the MO who stays up to date beyond ASCO. I want standard of care and beyond as things are changing in treatment options. I want a leader, not a follower. Mine is also dept chair and I do feel that benefits me in many ways with my other docs. His NP who I mostly see is dantasti
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Shetland, I gave it a lot of thought and for my personality, I think I prefer a woman oncologist, too. As for some people who say they love their oncologist (or whatever kind of doctor), sometimes the reason is because they like a doctor who calls all the shots and allows the patient to be passive, almost childlike accepting doctor's orders. If that's how some people cope, I will not judge. We all have our own criteria, but that scenario is not for me.I love reading everyone's personal experience with their oncologist(s). It's so insightful and from your comments, I'm drawing up a good checklist along with my own preferences.
The nerve of our oncologists having their own lives! Haha, I get it! My onc was probably not even 5 feet tall yet walked and talked with an air of confidence always. It made her so likable. She was a good combination of professional and personable.
Having done more googling just now of the onc I chose, I'm feeling more confident in my choice. It sounds like a specialist is a good choice. I found an article from last year where she is answering questions about women and metastatic breast cancer. Not once does she say “it's treated as a chronic disease like diabetes". The depth of her answers is resonating with me. She discusses the importance of clinical trials, the San Antonio Breast Cancer Symposium, talks about the full lives women with mbc have and more. The cancer center I go to collaborates with John Hopkins Medicine and she talks about that, too.
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MrsM - I think that sounds awesome. I never bought that chronic disease line (which was only given to me once, by the breast surgeon who had to deliver The News - they must be coached in that or something), its only chronic for the level of medical appointments and daily meds. You sound really confident in this choice and I really think the specialist is the way to go here.
Re: male vs female, I'll whip my top off for anyone to poke at Frankenboob, but that first MO phhwooarrr. A little too close to my "type" and he had a deep voice and fancy accent. I really didn't want to have another "too dishy" MO after that.
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Sondra- I failed to mention my first MO that was male,,, he had a husband.
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Hahahahaha! Sondra, you crack me up mentioning your dishy oncologist! I don't pick up those kinds of vibes often, but last year I went to the ER for shortness of breath due to low red blood cells, and was admitted to the hospital. The tall doctor on the floor I was sent to strolled in to my room with such perfect confidence and a personality that I so immediately connected with and was so cute, as I was listening to him and smiling, in my head, I was saying to myself, “why, yes, doctor, yes, I will marry you." Lol.
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Divine. It sounds like you don't like the comment “it's treated as a chronic disease like diabetes. ". I wonder what your interpretation of that is. I just take it to mean it's getting to be as treatable as diabetes and not as fatal as it was. Not in the sense that treatment is routine and certain important issues could be missed.
What am I missing here?
Gailmary
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That it is fatal.
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gailmary,
Here's my take on the comparison to diabetes. Although diabetics do face risks and potentially serious problems including death, the odds of leading a fairly normal life with consistent management are quite good. For us stage IV folk, not so much at all. I agree that things have improved as I look back 10 years (No Ibrance, Verzenio or Kisqali back then) but in many cases we're not sure why. Why do people who look the same on paper end up with very different outcomes even with similar tx?We can't count our carbs, check our CGM or eat a snack to control our disease and have verifiable numbers that you learn to manage. If one of us survives for a long time, no one can say why! The treatments that keep us going are essentially like throwing pasta at the wall and seeing what sticks. And when that fails, you spin the wheel to see what's next and hope that something will be a magic bullet. The diabetics I know don't think that way. I'm with divine on this one.
Sondra, thanks for a good laugh. I have never had such a doctor but a funny thing happened right befmy bmx. I was being prepped for surgery with immediate recon. My younger dd was with me. My ps came in and introduced a resident in plastic surgery who would be assisting. My dd was stunned silent by the dishy resident. After he left she kept talking about how good looking he was. I reminded her that she was engaged!
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yeah, that. It is still fatal. Median OS is still 2-3 years. We're nowhere near it being chronic. I would throw a fit if an oncologist said it was chronic to me.
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Re dishy doctors -- A few months ago my onc had a fellow (an oncologist in training) whom she sent in to see me (which was fine with me). Besides being intelligent and kind, he was a very beautiful man. He was gorgeous, with eyes that reminded you of the Aegean Sea. Dr. Dreamy. And I had to talk to him about diarrhea, and folliculitis caused by shaving excess hair off my fingers (a drug side effect). Sigh.
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Re "chronic disease" -- But isn't it good to know we will not be as dead as we would have been?
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Ha Shetland and Sondra! Thanks for the laugh. I had a friend come with me to one of my appointments and she commented that my MO was very easy on the eyes. 😉 And yet I still also discuss bowel issues far too frequently. (I made a comment on another thread about MBC and the bowels. What’s up with that! If it’s not the big D it’s constipation... geez). Thankfully my MO and I can laugh about it.
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gail, I respect your perspective but I see things differently. Since being on this forum for a little over 10 years, I've made some memorable and meaningful connections with other women who had mbc who've died. So many, in fact, over ten years, that I cannot say how many. They have been different ages, in their 30s, 40s, 50s and older. Lillylady, Springlakegirl, Gumdoctor, Babyswim, ILuvRVing, ChainSawz, and on. Many of them died less than 10 years after they were diagnosed.
Statistics show the average person with type 1 diabetes was 42.8 years of age and had a life expectancy now of 32.6 years. Individuals with type 1 and type 2 diabetes can manage their disease with proper nutrition, maintaining optimum weight, exercise and monitoring their blood sugar. Someone with mbc can do all those things and still have her/his life cut dramatically shorter than someone with diabetes
I’m not saying diabetes is a walk in the park by any means. I’m also not trying to get you to change how you think about comparing mbc to diabetes. I’m only sharing my experience and perspective.
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Devine- seems like you had 2 good options and picked the really good option. I think being a breast specialist is a good idea. I prefer women also - although that can be the wrong choice at times. My MO is an upbeat person with energy and is very organized and responsive to emails and my input, I do get a 2nd opinion occasionally at UCSF. I think young can be more innovative, and have the latest education, but, older can have more depth of experience- so age is another detail that could go either way. My first MO was younger than me and retired at 60- he said it was an intense job and he wanted to do other things before he died.
I hope that it is a great match for you!
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I think that depth of experience can contribute to the oncologist making a good call when there are various choices or possibilities, and can contribute to good intuition. I have seen this with my onc.
Divine, that sounds really great, what you learned researching your choice of oncologist. I have a good feeling about this.
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I agree, the new onc sounds promising. Ever since mbc, I get more jarred when change occurs so I still feel some anxiety. At least now I'm kinder to myself about having those feelings, I was raised to soldier through everything without acknowledging fear or struggle, put on a stoic face. It's only been the past few years I've let myself examine my feelings and work through them rather than push them down as if they were unimportant. I appreciate being able to share these thoughts here among friends who understand. It helps knowing many of you have weathered oncologists changes.
Ohmygosh, I can just picture discussing diarrhea complications and shaving finger hair with none other than Dr. Dreamy Ocean Eyes and it totally cracks me up!!! Thanks for the great laugh!
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I figure any doc has seen or heard worse in their line of work, regardless of their appearance, and quite possibly seen worse than me on that very day. There is no shame in the human body and its functions, its our background and culture that assigns embarrassment or shyness. Im not going to lie, though, if I was fated to end up with terminal cancer I am just glad it was breast and not a gynae (and that is the ONLY silver lining in this!)
Re:the chronic illness debate - HIV is essentially a chronic illness and they are on the cusp of developing a vaccine for it - you can live a pretty normal lifespan now with HIV compared to the early years. In 40 years, that is amazing. But cancer has so many types, subtypes and influence from so many body systems its impossible to pin down and get to that long-term management phase. HIV is a virus, diabetes is an insulin regulation problem and cancer is, well, its a multifaceted and evolutionary (parasitic) disease process. Its really hard to find a solution and the amount that is unknown is immense. Maybe CAR-T will come along, perhaps this mRNA work will evolve into something helpful, who knows.
I would say compared to some other cancers, breast (for some) can be manged for quite a while, which lends itself to that chronic designation. Its "chronic" in comparison to pancreatic or stomach, but not chronic in comparison to diabetes or HIV.
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SondraF I almost spit my coffee at the screen laughing about your dreamy MO! Thanks for the great chuckle to start my day!
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NOT a "chronic disease".
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