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What Do You Want Most from Your Oncologist?

Recently, I had my six-month checkup with my oncologist. As I’ve mentioned before, I’ve had five oncologists. Not my fault. Just sayin’. I’m not that difficult a patient. Trust me. I’m not. It’s eight years since my breast cancer diagnosis. Eight years since the shit hit the fan. Eight years since Dear Hubby and I walked into that first oncology appointment wondering WTF was in store for us.

This time around, my appointment fell one day after the date of my diagnosis eight years ago. One day. Talk about adding a surreal touch. Eerie.

I am happy and beyond grateful to report that I’m still NED.

My oncologist and I had our usual conversation. I’m sorta bored, happily so, by our repetitive-in-nature sort of discussions. He probably is too. Sometimes I wonder if he sits there thinking, come on, lady, enough with the questions; I’ve got more pressing things to do yet today.

In a nutshell, I’ve got issues. I’ve got more than my share of collateral damage. But I’m still here and as Dear Hubby often jokingly (sorta) reminds us both, we’re still on our own power.

But I am still pissed off about the whole cancer shit storm that has ensued and changed my life and my family’s lives for good. So yes, I’m still NED, still grateful and still pissed off. But mostly, I am grateful.

Still NED, still grateful & still pissed off

I am allowed to be grateful and pissed off. So are you.

After I read Martha’s recent post, I love my oncologist, but…, I started thinking about the relationship I have with my oncologist, and I started wondering what your relationships are like with yours. I hope you’ll share about yours with a comment below.

Specifically, what do you want most from your oncologist, and do we sometimes expect too much from them?

As Martha confided with us in her post, she knows patients who have close relationships with their oncologists. Some exchange hugs on every visit. Some discuss families, jobs and vacations. Some share photos of loved ones with each other. Heck, some have photos taken with their oncologists. She acknowledged that she was sorta envious of those relationships.

I mean, who doesn’t want a special relationship like that?

Honestly, I guess I don’t.

What do I want?

I want my oncologist to be knowledgeable, competent, compassionate, respectful of my viewpoints and yes, personable, to a degree anyway. I expect eye contact. I want to be listened to. I want validation. I want help managing long-term side effects. I want honesty, integrity and all the usual stuff like that.

I want these things from any doctor I see, don’t you?

Though our relationship is far from perfect, I have these things with my present oncologist. I did not with all the others.

One more thing I’ll share with you, my Dear Readers, is the fact that I have never mentioned to any of my oncologists that I have a blog or that I’ve written three books related to breast cancer. I’ve never mentioned it to my primary care physician either. Although, I likely will tell her at some point as she was recently diagnosed with breast cancer herself. But then again, maybe I won’t.

Why the heck not?

Maybe it’s because I’m an introvert. In all honestly, I have never felt comfortable with any doctor. Ever. This probably has more to do with me. I don’t like it when others are in my space (for lack of a better way to put it.) And when you have breast cancer, saying doctors are in your space is an understatement.

Maybe I prefer to keep some things private. Maybe being so vulnerable physically makes me want to shield and protect the real me, the inner me. Or maybe it’s because I don’t think they’d be interested in reading my blog anyway. But then, there are some wonderful docs out there in Social Media Land who do read my stuff online. Heck, they even share my stuff now and then. So, I might be wrong.

I guess I just don’t need my oncologist (and other doctors) to know the details of my life outside those cancer center doors. It’s a sort of wall, I suppose, a separation of lives.

I don’t need or even want my oncologist to be my friend; I need him to be my oncologist.

What about you?

What do you expect from your oncologist (and other doctors), and do you think we sometimes expect too much? 

How would you describe the relationship you have with your oncologist and/or other doctors? How much do you share about your personal life?

If you have metastatic disease, what matters most to you, and how has your relationship with your oncologist changed, or has it?

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What Do You Want Most from Your Oncologist?

 

 

 

25 thoughts to “What Do You Want Most from Your Oncologist?”

  1. I always wanted honesty from my oncologist, and to be listened to. I felt after 6 months that he was not listening to me. When I complained of 2 side effects, he dismissed me. Then I had my personal doctor run tests, I did not have what my oncologist suggested, that oncologist diagnosed me from my side effects only. I went to my oncologist with my real results. My oncologist then over prescribed a sulfur drug for my symptoms from radiation, my personal MD made all the calls for me as I was very sick from this overdose. Finally , this major hospital allowed me to switch oncologist. I am very happy with my new oncologist! Don’t be afraid to speak up!

  2. I’ve had good care from my oncologist. I’m on my second now, as the first is no longer working in my area and he seems okay. Mostly I want eye contact and a doctor who can listen and respond to what I have asked without immediately saying the first thing that comes to mind, to pacify me, and save time. That always just shuts me down. Once it happens, and it usually does on the first question, I’m done. I just get through whatever he wants to say or examine, and get out. I really wish doctors were given real instruction on listening and recognizing when they have stopped listening and jumped to a conclusion. If their timing is say, within 5 -15 seconds, they are probably missing a lot. They may have a lot of expertise, but I’ve never figured out how to talk to a doctor so I am heard. Not being wealthy or well educated probably plays into this, but I am literate, so it is insulting. I dread appointments because of classism more than anything.

    1. MargM, Your comment makes me sad. I agree, doctors should learn or be instructed in communication skills somewhere along the line. Communication is key. Being treated with respect starts with being listened to, and that should not have anything to do with wealth, education, class or anything else. Might it help to write your questions down? Or to bring someone with you? You don’t mention when your diagnosis was, so I’ll also say that learning to self-advocate is a skill and like any skill, it’s a process. You’ll get better at it. I should probably write a post about how to talk to your doctor sometime. I might also suggest the book by my friend Beth Gainer. It’s called, “Calling the Shots in Your Medical Care.” Great tips in it. Thank you for sharing.

      1. Hi Nancy,
        I do write my questions down, never more than three. I don’t bother asking the last two if the first one has been blown off. My questions are typed up, in order of importance, carefully thought out and well worded. Really, all I can think of is that I often look like hell, even if I’m trying hard not too. That’s why I used the word classism, but who knows. My husband stands or sits, rigid as a two by four, and says nothing. Not much help. Friends offer to come with me, but I just can’t. I have no friend that I want to share every gory detail of my illness with. Okay, there’s a bit of a rant. I must say I appreciate your reply. Thanks.

        1. MargM, Feel free to rant any time. Good for you for putting lots of thought into your questions and writing them down. Keep asking them. Thank you for your additional comments. My best to you.

        2. Hello,
          What I have found works for me is typing out my list of questions and I bring a copy for the doctor. I hand it to them when they walk in the room, and for the most part I am provided answers. I’ll tell you that I do press them, and at one point I posed 23 questions. None were silly to me; all needed to be addressed and answered. I feel this is too big of a deal to relinquish decision making to someone I barely know.

          1. Georgia, Thank you for sharing what works for you. And good for you for pressing them when you want (and deserve) answers. You’re so right, this is too big a deal to expect any less.

  3. Funny how we can have the same disease, but it affects us differently. I have had three oncologists since being diagnosed with MBC in Feb. 2015. My current onc I’ll meet next week for the first time. I’ve chosen her specifically because she’s a woman (I find, and research proves me out, women doctors give better care that leads to better outcomes) she focuses only on breast cancer, she has an office location closer to me and she’s part of a research hospital where she’s involved in cutting edge treatments, clinical trials, and information. I don’t need touchy feely. I’m also not on a set-it-and-forget-it treatment. In three years, I’ve had three treatment changes and am looking at another one likely this year. I see myself as the coach of my team, because my overall interest in well-being is far greater than the cancer focus my oncologist has. For me, my treatment also includes exercise, healthy eating, social support, mental well-being. I don’t expect my onc to manage all of that, but I do expect that she take an interest in it and point me in the direction where research has shown the most benefit (for example, the latest research shows that having adequate social support and access to a medical team who can answer questions timely can extend life expectancy 5 months. For MBC, which has a median survival rate of 3 years, that’s a 20% increase in life expectancy). What I like about my last onc is that I could email a link to research I’d read about and she hooked me up with a researcher in her organization doing that work who can tell me directly what’s best, what’s working, where to get involved. So I guess what works for me is not just my onc, but being part of a huge research organ that I can access at any time. Research shows that each of these small tweaks in care adds a few months to life expectancy. String them together and suddenly the future begins to look bright and distant.

    1. Liz, It’s funny you mention the woman doctor thing. I chose a woman oncologist a few years back and that relationship was a disaster. She was a specialist in BRCA and being female, I was really hopeful, but it wasn’t meant to be. Calling yourself the coach of your team makes a lot of sense. Martha utilized the team approach of looking at this too. Works for her as well. I agree, being able to email about research or whatever, is huge. Small tweaks do add up. Good luck meeting your new oncologist next week. Hope that goes well. Thank you for sharing. Oh, and I don’t need or want touchy feely either.

  4. I was diagnosed almost 3 years ago and have had one oncologist I have thought of changing recently. My oncologist has 3,000 patients and I feel like a number. This is because he was transferred from one small practice to a very large hospital. I know no one there except him while I know everyone at the old place. At one point he told me I could email him. During a very anxious time right before my mammogram I got carried away with the emails. He was not happy with me and told me in no uncertain terms that we are not friends and he does not encourage personal relationships with patients. I was hurt and embarrassed. He and my PCP suggested I see a therapist which I did. He does share family stuff with me and occasionally asks about me. Now I can only communicate with him through the official patient portal. Nurses answer my questions so I’m not even sure he even sees my messages. I am NED and understand that I don’t need to see him as often but it is a hard adjustment for me to go from 3 months to 6 months. The Tamoxifen and Effexor makes me needy and anxious! I need to know that he is available to me if I need to talk to him. I sometimes feel that I am an annoyance to him.

    1. MaryEllen, I am sorry you were made to feel hurt and embarrassed. That is not right. It’s also not right to feel like just a number or that you are an annoyance. Only you can decide if you’d like to switch. I know it isn’t always as easy as just doing it. There are other factors that come into play. And yes, it is a hard adjustment. It’s common to feel anxious, and I’m glad you are talking with a therapist about all this stuff. My best to you. Thank you for sharing.

  5. throughout my life I’ve been told that I want too much from people. “You think everyone is your friend,” someone once told me and sadly, this is true. I am an extrovert; I want people to know me! So when I was diagnosed and referred to my first oncologist (I’ve had 2), I wanted to really like her. And I did! She met my husband and all my kids when they came with me for chemo. she knew about my bi-polar daughter’s problems. She heard about my struggles at work. She was a more than competent doctor, funny, very caring, and went out of her way when I had a brain tumor a year after I was done with cancer treatment. She had been a breast cancer victim herself, so she understood (I believe) what I was going through. One time I was so very weak that she actually hooked my bra back on me after her examination. She came to my hospital room during the tumor treatment and I believe insisted that the major hospital she was affiliated with do the pathology of that tumor to rule out cancer (and thanks be to God, it was NOT cancer). But sadly, the same Big Hospital had her working 24/7, no breaks, no vacation unless she shut things down completely at our satellite location. Which she would not do. So it was a very sad day when she told me she was leaving the state. At my last visit which happened to be her last day in the office – she talked with me for well over an hour. Hugs? I always got hugs. Humor ? was always there. Great care? Absolutely. Her replacement, another woman, is over cautious which I find difficult, almost shy and I read more about current trends in cancer treatment than she does (I know this because I bring up articles and she asks for copies). She wants copies of every single test that other doctor’s do and I swear if she could she’d know all about my (great) sex life. I don’t dislike her, but there’s not the same connection. I have that great connection with one other doctor. Most of my other physicians are good, but I’m not attached to them. And recently I had a horrible reaction to a new physician; not sure why yet because she has great reviews from others. Unfortunately she made the comment, “You are so lucky” when I was at a very low point and it struck me that she hadn’t read my medical history. So yes, I have really liked two doctors, including one amazing oncologist that I miss on every visit with the new one.

    1. Linda, It’s hard when you really connect with a doctor and then he/she leaves for whatever reason. I experienced that with my first two oncologists. We have to recognize that all doctors have different personalities, mannerisms, communication skills, delivery styles, experience and skill levels and so on. But still, we each have to figure out what we do need and want from any doctor in whom we place our trust. A comfortable, working partnership that is acceptable to both parties is needed. And my goodness, I understand how that, “you’re lucky,” comment rubbed you the wrong way. Thank you for sharing.

  6. I’m almost three years out. Within my first year I quit all estrogen blockers. ALL!

    I am very careful of what I eat. Hormone wise.

    So I quit oncologist too because I don’t want to get the lecture .

    1. Carol, You don’t need to be lectured to, but I worry when you say you stopped all followup visits. You have the right to make decisions that feel best for you, so visits needn’t stop because you opt out of recommendations. Choice is always on the table, or should be. Do you see a primary care doctor? My best to you. Thank you for taking time to comment.

  7. I am working through this issue with my dad’s oncologist. I haven’t known him long but he seems a little inflexible. But I don’t really have a frame of reference for this particular medical group or stage IV treatment or his type of cancer, OR issues in treating the elderly. I am also learning that perhaps the reason his doctor is so strict on keeping him on schedule with the bone strengthener injections is perhaps related to the results of the most recent bone scan, which show Dad to be at high risk of hip fracture. Given that Dad has Parkinson’s, too, and can barely walk using a walker, I could get why an oncologist would be strict. A broken bone would be the end of living at home, for Dad.

    On the other hand, he could be too inflexible. I have talked to my parents about the need to no longer put off follow-up with palliative care. I think that support would help provide a better frame for assessing his care as well as for making treatment decisions.

    1. Elizabeth, It’s different when we are dealing with an oncologist (or any doctor) on behalf of a loved one rather than for ourselves, isn’t it? I have no doubt you will be a tremendous advocate for your dad and you, together with your other family members, will keep figuring stuff out as you go along. Of course, most importantly, you’ll be the source of love and support for both your parents during this difficult time. I am sorry you are dealing with the decline of your dad’s health. It’s terribly difficult to witness and yet, the privilege of being there and the memories you are continuing to make, will be treasures for your heart forever. Palliative care sounds like something to definitely pursue. I am thinking about you and your family. Take care of yourself too. Thank you for taking time to comment.

  8. I am already anticipating my first 6 month check up and not looking forward to it. I have a medical background- my father was a doctor (GP), I was a medical assistant and manager in medical billing; my husband is a pharmacist. My sister is bio genetics’ professor, and my sweet sister whom has died was a chemical engineer for a medical manufacture. Bottom line is that I have lots of information that the average person does not, about strange things most people don’t know about and are afraid of- genetic panels, clinical trials, things that are useful only if you have cancer. My mother died of ca of the breast and my sister ca of the bile duct, so lots of cancer treatment options have been part of my life. That does not make me a doctor, but I know things. I have tons of medical allergies from tape to opiates. I find any doctor under the age of 70 feels threatened by any questions! What I am asking for is to be listened to and when I have a question with a treatment or drug, if you don’t know, (nor do I except you to know everything), just say that and get back to me. What I have found is that they are on the defensive from the start. Here is an example of what my oncologist said at my 2nd appointment. I was struggling with pain after my double mastectomy and was asking about Gabapentin as I am allergic to almost all pain medication. She obviously did not want to address it as she stated shortly as a mater of fact “I have never heard of that”. At our first meeting I specifically stated what I expected and how I felt that my surgeon did not meet my expectations and why. I wanted to make sure that she knew up front so I would not have that issue again. So feeling a little pissed I said “You mean to say that you did not know that people had nerve pain after surgery or you have not heard of the medication?” She looked up at me and it was the “shit, you caught me” look. And my look back was “told you that I know things, just be honest”. She was clearly uncomfortable and I wanted to make sure that she stayed that way for a few seconds. I let her off the hook stating that I would talk with my GP about it. Her look was somewhere between relief and annoyance. Anyway, I look at our relationship like bad marriage, we both need each other, but either is not quite ready to leave; so at the moment it is okay and I can wait her out. If I wind up with MBC I will change for sure. I am not sure that I trust her from that experience. Trust is 95% in my opinion.

    1. Lisa, I agree, trust is vital. I don’t think it’s fair to say any doctor under the age of 70 feels threatened when questioned, but I get your point. Your background, experience and general knowledge about cancer likely intimidates some. I had one oncologist who definitely didn’t want me questioning her judgment, and we parted ways. I had such high hopes for her, too. She was rather defensive, so I hear you on that. I like the way you put it, “I look at our relationship like a bad marriage, we both need each other, but neither is quite ready to leave.” That’s pretty darn descriptive! Thank you for sharing so candidly. Good luck with your upcoming checkup. I’m very sorry your sister and mother were both stolen by cancer. You know things indeed.

  9. Lisa it is right that trust is something that every patient seek from their oncologist. Otherwise, it will be very hard to end up well. I am very sorry for your Lisa. But god will be always with you!

  10. Hi Nancy,

    I’m so very grateful you are still NED and that your oncologist meets your needs. It’s so difficult to find a good doctor that meets all our needs, but it is possible.

    I want to write about my oncologist someday because I feel he’s special. The first thing I look for in an oncologist is competence, validation (like you say), and caring about me as a patient and a person, two different things. Oh, and he/she has to have excellent communication (including listening) skills. I also don’t need a friend in my oncologist, but I feel he’s always in my corner.

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