Lets Talk About Oncologists
Comments
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Maybe a little off topic, but has anyone felt like they were treated differently by their oncology team since becoming metastatic?
In my case I found out about my MBC right smack in the middle of covid, so I wondered if the change I felt could be from the added general stress healthcare workers must have had last year with all the covid. Or is it the MBC?
Am I less of a priority now that my fate is sealed? Is that why I sometimes feel overlooked? I never used to feel that way. Are the early stage patients more enjoyable, and more upbeat?
Just curious if anyone else has experienced that.
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Buttons- I was de novo, so all my oncology team has known with me is the MBC. But, Yes, with my PCP I can feel that way.
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Opposite for me. I feel that I have my MO’s complete attention most of the time. My PCP is the same. They jump to it as soon as I mention any ache or pain. If anything, it makes me a bit uncomfortable at times as I feel guilty about moving to the front of the line imfor scans, tests, etc.
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buttons, I'm looking at your signature line and am sorry that you were diagnosed with bc at age 32. Then four years later you get a metastatic diagnosis at age 36. In the middle of a pandemic. I am sorry this is what you are dealing with at such a young age. How did you come about learning you had mbc?
I was diagnosed with mbc from the start, so the onc knew what she was dealing with from the beginning. I'm not sure why your onc team treats you differently since the progression to stage iv. But you certainly are still a priority, so please try your best not to allow them to treat you as if you don't matter as much as patients with lesser stage bc. Covid and all it entails has been hard on all of us, but your medical team should behave as professionals. In some ways, you are still making that adjustment to learning to live with mbc as it hasn't even been a full year since that happened. It is okay to stick up for yourself and want to be seen as a whole person and be treated in a way that acknowledges that.
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Divine, I found out about my metastatic recurrence because I had been getting routine PET scans since my local recurrences a year after my initial diagnosis. I had a clear PET in January 2020, but then in June 2020 something showed up in a bone. The weird thing is that the cancer just exploded after that - I progressed very quickly in the first 4-6 months of becoming metastatic. Chemo has stabilized things and caused some tumor regression since then, which I'm grateful for, even though it's been tough. Being diagnosed young is... terrible? This is always terrible, at any age, but it has made me sad lately that my life will probably be cut so short. But I'm not the only one who is facing this. My secret milestone goal is to reach my 40th birthday.
Divine, I also hope that your new MO is a good fit for you, like your last MO was. It's such an important relationship.
Sadiesservant, I think you are very fortunate to have that relationship with you MO. I think that's the way it should be!
Candy, that's interesting that you may have experienced it too. I honestly still don't know what it is that I'm sensing, but I do think it's something. Hmm. Maybe it'll make sense to me one of these days.
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I have actually asked my doctors (outside of my MO) if what they are recommending is the same thing they would suggest if I wasn’t stage 4. If I get a sense that They aren’t fighting as hard for me, I’ll look elsewhere
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Buttons- When I was first diagnosed, as I said Stage 4, my PCP (who I had been with for 20 years) said that some PCP's just let the MO deal with everything for a Stage 4 person. That the PCP essentially backs away from that patient. That the PCP's stop doing routine stuff- PAP's, colonoscopy, labs, etc- for a Stage 4 patient and the goal is concentrating on the cancer and that is all. He said he would not do that with me. But, I have noticed that he doesn't seem as aggressive about things now. And I feel he doesn't listen to me as well as he used to. Maybe I am wrong. But just a feeling I get about his care before and now after the Stage 4 diagnosis. But, maybe, I too have a different set of priorities.
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Buttons, getting an mbc diagnosis at any age is bad news but going through this when you are so young, yes, I think it is terrible. My heart always goes out to women your age faced with something so life changing.
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Sometimes it seems as if we are torn between experience/expertise and bedside manner. Personally, I feel strongly about finding both qualities in an mo. At stage IV our relationship with our mo, bedside manner wise, becomes just as important as expertise and I won't settle for less. My mother used the same obstetrician for all three of her pregnancies. She thought he was arrogant and treated his patients like helpless women. However, since I had been a healthy, normal baby at birth she superstitiously equated this with the doctors expertise 🤦🏻and continued to use him despite her feeling very uncomfortable with his demeanor! I simply don't understand this and am clear in my own mind about how I wish to be treated by any doctor. If I can't feel personally comfortable with a doctor and they don't treat me with respect and dignity, I don't care how much expertise they have, I simply find another doctor. Once I received my stage IV dx I knew that my relationship with my mo would, hopefully, be a long one so it was important that it be a good one!
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I wanted to briefly respond to something Sondra said earlier: "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." I just wanted to say that I do not feel ashamed of my body and its functions at all, and I am fine with my female doctor or nurse examining or discussing when needed. I will also discuss matter-of-factly with male doctors or nurses -- regrettable though it was with Dr. Dreamy Eyes! I do have modesty about exams when it comes to strangers or men. This could be cultural, but it feels natural and instinctive. Maybe it comes from an ancient safety instinct.
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This discussion has been really interesting and informative, thanks for all of your sharing. I have been pondering the different kinds of perspectives that various doctors I see have since my diagnosis with denovo MBC. The spine doctor who refused to believe that I did not have osteoporosis even after my DEXA scan came back normal now treats me like I'm at death's door (I don't know why I still see him...he keeps making new appointments with no real new advice, but having not called him out on his miserable behavior earlier (my PCP noticed my frustration in a portal message and looked further) it seems hard to bring up now). This seems to be more the case for older doctors....an older MO I saw when my usual MO was unavailable for a check-up early on in treatment also seemed grim. The very young MO I see has not sugar coated my condition, but also holds out some hope for "long term" control of my cancer through current meds (I have not wanted to get too specific about what he means by "long term"); this has been true also of the younger doctors from whom I sought second opinions at a research center out of town.
Regarding BC specialists as opposed to general MO's, I have to admit I thought when first diagnosed that I should shift to a BC specialist. However, the one I was referred to was so insulting and dismissive I would never go back to him again. I had hoped to switch to a woman at that point, but my experience with trying to switch was so aggravating, I decided to have a heart to heart talk with the MO I had been seeing about things that had worried me about the diagnostic process. He listened and has been more attentive to what he knows I am concerned about since. I've made the decision that seeing someone who knows my history is, for the moment, important. If I had to change, given this experience, I'm not sure how I would think about the experience vs. youth question.....
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While there’s no shame in human body functions, there can be a lot of ridicule, criticism and embarrassment attached to them. How you are raised and your own personal temperament influence how you handle it. Some people take it in stride, others are more sensitive. Age may play a part, too. I’m more comfortable now discussing such matters than when I was younger. It’s a very personal thing.
[I know I wish I was much, much, much kinder to myself during all the years when I had my period. I used to soldier through it all, a lot of time pretending I was okay while feeling like shit; taking care of everyone else while minimizing cramps, bleeding, headaches, stress. I was raised not to discuss it, and any allusion to it affecting your daily life meant your were weak for which you would be ridiculed for. I would do it all differently now.]
Oncologist choices are personal, too, as is probably any type doctor selection. But as we are dealing with mbc, it feels more dramatic and even a matter of life or death to find one who is in our corner bringing all their best to our particular situation.
Prarie, good for you for not returning to the specialist who was so dismissive. When I was younger, I put up with sub-par treatment in many areas; in part a reflection of low self-esteem and in some ways, societal conditioning that women are supposed to accept less than and be okay with it. I am learning to make myself a priority and not feel guilty about it.
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I think, for me, the most important aspect I want in an oncologist is that they actually LISTEN to me. I know my body, they don't. I also research everything to determine what I want for me. I don't want a doctor who treats everyone as "one size fits all" because that just isn't true.
I just saw my current onco for the last time a couple of weeks ago. She has moved on to a bigger hospital system. I'm ok with that, because while we have had an awesome relationship these past years, she kind of let me slip through the cracks these past few months. If I didn't research, I'd be in hospice care now for sure, and I wouldn't know about procedures that still give me hope.
I will meet my new onco in the next couple of weeks, a male. I'm not enthusiastic, but I'm willing to give him a chance. I will move on in a heartbeat if he is like my first onco, also a male, who dismissed my concerns about issues I was having. I don't want a doctor who's attitude is "stop reading and do as I say."
Best of luck to you Divine, I'm hoping you get what you want as well as what you need.
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terri, I wish you the best with your new oncologist!
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Divine,
Sounds like you've thought through your new MO very well.
FYI, I am also in the Hopkins system. I have my MO appointments at the Mother Ship in Baltimore, but I do go to other docs who are Hopkins affiliates, etc. -- e.g., about to start radiation on my newly constructed hips from my recent experience (detailed in other threads). One thing about the Hopkins system is that you can often find other docs with whom you can do informal consultations and they will provide some useful info for you.For example, when I was on immunotherapy, I contacted research docs who knew the ins and outs of immunotherapy and was able to ask meaningful questions and get some answers.
Good luck.
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Hmmm... it appears I am also due for a bit of an adjustment. Just had a call with my MO and he let me know that he will be taking a six month sabbatical starting in August. I'm sure it will all be fine but it does feel like my safety net just got pulled out from under me... eek!
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Sadie, wow, that is a turn of events for you. I'm glad you got advance notice about his sabbatical. How will that work out for you? Does your current onc automatically pass his patient cases off to another oncologist? I hope the transition is a smooth one for you.
The sabbatical is interesting. I googled why doctors take them, and generally it's to avoid excessive burnout. It can make them better doctors, having had time to reflect on and redirect their lives. I wonder how a year of pandemic affected your onc and if it is a factor in his choosing the sabbatical at this time.
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Divine, I agree that the medicos need to take breaks! And COVID added another layer of challenges. Even without the pandemic, it must be very draining working with cancer patients constantly. It iseasy to forget that this their job, especially when they are not available when we need them.
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Sadiesservant, that is a surprise! But I'm sure your MO will leave you in capable hands. My MO went on sabbatical a while back for a shorter time, but actually ended up coming into the clinic a couple times to see patients that were really in need. I was one of those. In any case, your MO may still be following along from a distance, even on sabbatical. (But then I don't really know how it's done!)
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Sadie & I are at the same cancer agency. My MO went on 3 month sabbatical to do research - our facility is affiliated with the university & the med school and is involved in research and apparently these research sabbaticals are not uncommon from what the chemo room nurses said.
She's supposed to be back in July. My files got transferred temporarily to another MO. It's been fine but I am hoping she comes back before I have to make treatment change decisions....
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Hi All,
My MO will be doing research but did indicate he won't be going anywhere so will be available by email if I need him (he did add a caveat "if he is paying attention" - I am sure once he is away from the clinical side it's easy to change your routine). He went on a brief sabbatical in 2001 when I was going through adjuvant treatment and, at that time, I saw a variety of oncologists. I'm hoping that he will pass me off to someone in particular given the length of his time away. I am glad, in a way, that he is taking this time as I know it's been pretty challenging during COVID. He alluded to a lot of people being off on stress leave when we spoke a couple of months ago.
It's coming at a bit of a challenging time for me. After completing six cycles of Xeloda, which have had a significant positive impact on my liver mets, he wants me off treatment.
His focus appears to be on allowing my body to recover and not get too dragged down by treatment. If I have progression we will try another chemo but he ultimately decided to prescribe Aromasin with the instructions that I could take it, if I wanted to, in four to six weeks once I was feeling back to normal (I got the sense he was placating me on this one as he doesn't seem to hold out much hope that I will respond to further hormone treatments). It probably makes sense - if we think of chemo in the adjuvant setting we don't continue on... the expectation is that the prescribed number of cycles kills the cancer - but I need to reach out to him to understand what, in his experience his expectations are in terms of progression. I feel a tad vulnerable, like I'm playing a very high stakes game of chicken! My cancer is slower growing (I know the fact that I was almost 16 years from original diagnosis to metastasis factors into his thinking) so I'm unlikely to end up with a liver full of cancer in three months but....
One upside, while I really like my MO, his sabbatical will give me a chance to quietly get a second opinion, something that is a bit tricky in our system. I may get some insights into additional options, genomic testing, etc.
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Interesting that the physicians do research sabbaticals. Sadie, I can see how your onc’s sabbatical can work in your favor to possibly get a second opinion on his treatment plan for you. Hope that works out.
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Hi Buttonsmachine.
I saw this in your profile and I'm curious about the needle seeding comment.
"Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy"
I have my first biopsy (4 at same time) on 6/10/21. I recall the doctor saying "seeding needle" during the biopsies, but I don't really know what that means. I have continued numbness in my upper chest between my clavicle and armpit since. I called her 2 days after and she said to just keep an eye on it and it would probably go away over time. Do you mind sharing what happened to you during the needle seeding process?
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barbojoy, I'll send you a PM. :-)
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