I have not seen my oncologist in a year. At the last 3 appointments I’ve been seen by the nurse practitioner, I have no problem with a nurse practitioner. It was a nurse practitioner that took me seriously and gave me the initial diagnosis of MBC. But this nurse practitioner answers my questions with “ I wouldn’t worry about it”. Someday I hope to be bold enough to say “ when you have labs and scans like mine, then you can say don’t worry “. Anyway at my appointment in June, I said I wanted to see the doctor at my next appointment. I was rescheduled twice to accomplish this. I went yesterday for my appointment, and in comes the nurse practitioner. After a few questions and her usual response, I asked if I was going to see the doctor. She said if I didn’t mind waiting, sure. I finally saw the doctor and got my questions and concerns answered for the most part. At the conclusion of the appointment, I thanked the doctor for her time. She said that because I scheduled my appointments in the afternoon, it was hard to see her because by that time of day she is behind. What she said next stunned me, “because you’re not that sick, I thought seeing the nurse practitioner was fine,but you can request to see me at any time”. I am very grateful and thankful that Ibrance has worked so well for the last 3 1/2 years. But I don’t think it’s unreasonable to actually see a physician that’s managing my care. I would appreciate any perspective you all may have on this, but I don’t think I over reacted.
Unhappy with last appointment - SHARE Metastatic ...
Unhappy with last appointment
I should really sit on this one before I respond. I cannot reconcile the responses you got.. Seems pretty insensitive. I think you should tell the NP what you wanted to say. And what do you say to a doctor who says you’re not sick enough to see her? How sick is sick?
Hi Boobitymom - I'm with Nstonerocks on this...YOU'RE the customer; You're paying, either directly or indirectly (through insurance or a government program, into which you've paid). Is there a table in the room you can pound your fist on? Claim what is yours. I love my oncs, and treat them with due respect based on their expertise/education/etc., but at the end of the day, they work for me. My "team"/staff. Don't forget it for a second...
This is what we all need to remember...that they work for us and we’ve paid for this
It’s strange how healthcare is perceived differently to any other product...I still feel slightly in awe of the medical profession which is ridiculous when I was part of it myself before I retired...I personally feel I have to sort of ‘suck up’ to them so I get the best care etc which is also ridiculous
How Boogitymom can be called not that sick is beyond belief though it’s weirdly comforting to be called that...if you see what I mean
I would be a bit cross though to be denied a regular appointment with the oncologist although I suspect many NPs are more kind and approachable than some arrogant oncologists
We all need to be more assertive...we’re not to be written off!
Barb xx
Wow I think I would find another oncologist no matter how sick you are you should be seeing doctor at least every other visit that’s the way it works with my oncologist
Hi,
I find the way you have been treated unacceptable. It is not unreasonable to expect to see your oncologist during appointments. I see mine at every appointment, usually with one of her oncology nurses present. Very occasionally there is no oncology nurse with her, but I am not examined if she is alone. I don't have a problem at all with nurse practitioners, but I would prefer to be seen by my oncologist during scheduled appointments.
I find the "not sick enough" comment out of order. On the one hand, it could be taken as a compliment and as affirmation that you are doing well, but it also sounds dismissive. It's like the time my oncologist told me I was "lucky" to not be triple negative. I would never put the words "lucky" and "cancer" into the same sentence. I have learned to fight my corner and get the care I deserve, as it is not always forthcoming. I hope you can get this sorted.
Sophie
Hi, I don't think you"ve over reacted at all. My view is you should be seeing the oncologist each time in case you have any new worries to discuss. I guess some NPs could answer some queries but 'dont worry about it' doesnt address whatever it is you're asking. Clearly you are worried or you wouldnt be asking - that would be my response and demand a proper answer.
I imagine the 'not sick enough' comment probably wasnt the best thought out thing to say and I bet on reflection he/she was possibly be thinking 'why did I say something so stupid'. I myself dont look - or feel - ill at the moment but that doesnt mean Im not. What we've got is about as bad as it gets - ok so a lot of us are still walking, talking, doing whatever, but facts are facts and this is a horrid, potentially (likely?) life limiting, disease that often has many complications and our fears, worries and questions should all be addressed fully and appropriately by someone most able to give the information aka the Onc.
So sorry you've had to experience this but as I'm beginng to understand as I go through my own journey, more often than not we have to be strong, assertive and clear about what we want - not easy at all.
Best wishes.
Josie
Not that sick! WOW! She didn’t mince words, but sort of provided insight on how patients are prioritized in her practice and likely many others. While I have not been told that in so many words, that is sort of how I feel I am treated at times. The morning visits versus afternoons is interesting as well. I did get a morning appointment after my scan and usually it is afternoon—more routine—as long as bloodwork okay treatment moves forward. Pain, rash, shortness of breath, marker increase, carry on. Your wbc is good that is pretty much what they look at or so I have been told. After all they don’t have a crystal ball and really don’t know if you need a treatment change until scan time. For them it is a profession and maybe after years of treating cancer every day they become desensitized to it. A huge reminder we do indeed need to be our own advocates. Going forward I will trust my intuition more and demand more.
My appointments are usually late afternoon. I remarked on that time once and found out that my practice schedules patients who are getting chemo in the morning so they can have their blood tests and see the doctor before chemo. Those of us on oral medication are in the afternoon and many times the docs are late. I don’t mind because they are late because they have had patients that need them more than I do. That said, I see the same nurse practitioner every other month and my doc the opposite month. Since I like them both it’s okay. But being told you are not sick enough was an unfortunate statement and I can understand what she meant but it came out so wrong! I would schedule to see the oncologist after every scan at least. You need to get that information from your oncologist and know you are still on the right path, although it does sound like you are doing well and giving us all hope that we can also do as well as you are. Good luck in speaking up for yourself, something that we all have had to learn and are still learning!
My Oncologist has done the same thing. I saw him once in 3 months, only to go over my PET Scan- the other appts were his NP (whom my husband and I do not care for - Ms. Negative.) My Oncologist does not feel that I am critical now. But I can request to see him any appt. I'm ok with that.
My opinion is, of course you should be able to see your doctor any time you want to! What was this doctor talking about? A patient is supposed to see her doctor when she or he wants to, even if 'your not that sick'. There is something about that comment, that would of bothered me too. Sending a hug your way.
My impression, after 15 years living with mbc and becoming a bc patient advocate and having alot of contact with others with mbc, is that medical practices vary alot in how they schedule patients and how well the oncs and nurses communicate with patients! There is a nation wide shortage of oncologists (and primary care doctors and geriatric specialists) that will likely get worse as we baby boomers age and need more care! Some practices and some oncs rely on NPs and PAs alot more than others do. Personally, I think what you have (finally!!!) been told about scheduling with the onc makes sense! I wouldn't like being told that I don't have to worry about something by the NP and would think that's a form of saying that she doesn't know and I would probably ask if that is what she means. Or it could be that she is so heavily scheduled that she doesn't think she has time to chat with you about a variety of your concerns. It might be interesting to see what would happen if you pushed a bit on that, saying something like "but I do worry and more information could do alot to ease my concerns. Please either answer my questions or have me see the onc so I can get answers to my questions." I am not usually a very well organized person but when it comes to dealing with this blasted lousy rotten cancer, I have gotten very organized! lol Maybe ridiculously so! I got myself the biggest 3 ring binder I could find, a bunch of dividers for it, and organized it with sections for test results, notes from my appts, things friends had offered to do for me, and I carried that binder to all my onc appointments for the first few years, and quickly had to add a second binder, lol. I still go to appts with a printed list of questions/concerns etc. Until last Dec I had a truly gifted onc who was the perfect match for me! She communicated well and was very direct, which is what I wanted. I also realized early on that when I was stable, our appointments tended to be short and that was okay with me because I knew that when there was more to talk about as far as my health care needs were concerned, she would give me all the time I needed. She retired last December and the onc I am seeing now is much younger, less experienced but has a mentor (on the other side of the state) who is one of the big name oncs in bc, so that upped my confidence in her. I suspect your onc and NP may not quite realize just how much those of us with mbc rely on them for info and if not the huggy kind of support, at least a supportive tone of voice and manner! It's okay to tell them that! I don't think you have over reacted at all! Living with this mbc is challenging in so many ways and has an impact on most every part of our lives! One of the challenges for many of us is learning to be self advocates, in ways that are sometimes rather pushy but without being insulting. If we don't have experience being firm and asking questions while expecting answers, it can be uncomfortable while we learn how to do that. You know, the old stereotype of the mild mannered unassertive "little woman", seeking to take care of others before herself, not asking for much while giving alot. I'm exaggerating a bit here but for alot of us, this self advocating is a whole new role and can be daunting to learn! And having mbc does make us vulnerable and not at our best--a hard time to learn all that! It's darn right scary to get this diagnosis and it's okay to remind ourselves and our doctors and nurses that getting straight answers can help ease alot of that fear! There is so much about cancer that is way beyond our control! But we can have alot of control over how and what we learn and how we ask for information. (It's 4 a.m., I woke an hour ago and can't get back to sleep, I have a very sore throat and am trying to decide whether or not to keep a medical appt late in the morning that will take me about an hour to drive to and is not urgent to keep...... I will probably just go to the local urgent care clinic at my primary care doctor's office for a look-see at my throat to make sure it isn't strep! So I may even more wordy than usual.....sorry if this is all tooo long!)
Well said, I too had been seeing the PA every other appointment, which I was fine with till she gave me the wrong information about a supplement ( which would have interfeared with my other meds) and did not inform me that even though my cancer markers had doubled (it was because my sample was being tested at hospital instead of sent out and this was happening to all patients) I didn't get the test results till that night so on seeing this high number , I almost had a heart attack and spent a sleepless night till I was able to contact my oncologist to have an explanation. I explained this to my Oncologist and was bold enough to say I did not want to see pa anymore because I had lost confidence. I was under the mistaken belief that a pa was almost a dr. , not true. Because of Our conditions even if NED we need to be seen by an onc. I think my oncologist is fantastic, she takes all the time I need and is always available. I think the hospital administrators try to cut costs by doing this, and the drs don't really have that much control. LWe are not cured, When I see my medical statements the office visit cost is the same no matter who I see. As a former teacher , I don't think my students should have been taught by me only on certain days and a para on other days. We need to have the experts doing what they are trained for. Our conditions demand it. I'm so glad I had this time to vent and that I could feel in power instead of passively accepting. 🙏Prayers for all.
PA's have a Master's Degree! I am currently seeing PA at the dermatologist's office for a bad case of eczema and apparently at this practice the only patients who see the dermatologist are those with skin cancer. I get a bang out of being in the waiting room--almost all people older than I am plus a few teenagers. Up til now, I have always had "good skin." Only pimple in my teens was one on my nose that popped up right before the prom! lol
You always have the best answers!!! I agree 100percent.
I agree. These oncs are working for us and we have a right to see them.
But, in a weird way it's kind of good to hear well you aren't that sick!
If your onc is behind in the afternoon, maybe make a morning appointment.
Always request to see the onc and see what happens.
When I first started at the cancer center after like my third visit, my onco brought in and introduced her PA to me (male) and said occasionally I would be seeing him instead of seeing her. They can write prescriptions and although they are not a valid doctor, they are the equivalent of close to being one. I have been in the ER (not for cancer) and was treated by a PA who did a wonderful job. My onco told me that once somebody is "stable" that she has PA meet with them for some visits but like every third visit I would meet with her. But she started out with him meeting with me, asking questions, and then reporting them back to her before she came in to see me. But my favorite was in the beginning and I was already on Ibrance and falsodex the onco ordered a lung biopsy and I was supposed to get the results that day. I had already been told from the scans or whatever it had been in my lungs and was transferred from the breast cancer center to the cancer center. I told the PA I was there to find out the results. He looks up on the computer and then tells me nothing was found. I was kind of dumbfounded and said are you telling me I am NOT stage iv. He said yes. I was furious. I said WTH am I doing here, why did the other surgeon tell me I was stage iv and why am I getting shots and taking meds? He looked a little flustered and got up and said the doctor will be in shortly. When she came in and I said am I stage iv or not. She said yes you are why would you ask. I said bc your PA just told me the lung biopsy results and said I was not stage iv. She was fuming and said I will need to have a talk with him. I knew he would get in trouble for (1) giving me results that she was supposed to give me and (2) for telling one of her stage iv patients that I was not stage iv. Next time I went I seen my onco and after that I seen the PA around the cancer center but it appeared he was no longer working alongside my PA. I think if you are stable and nothing is going on, they will use a PA. They have patients with triple negative which is the worst, or patients where it is spreading quickly so the onco has to devote more time to them. I considered myself lucky that I am not at that point. I would take it as a good sign if you are seeing her PA for now bc the onco has no new information for you bc you are stable and I get that some of her patients are having it worse than me so she needs to spend more time with them. It's hard but I always remember I am just one of many patients she has so I am okay with seeing a PA until my onco decides that something is amiss.
I don’t mind seeing a PA or NP, but I haven’t seen my MD in a year. I would prefer to see my md when going over scan results or when new labs are ordered without explanation. The no changed me from a 4 month scan schedule back to a 3 month schedule, when I ask the md, she said she had no idea. At this point I have no confidence in the np
Oh, over a year is quite ridiculous then. Maybe she goes over your results with the NP to make sure everything is okay but speak up. Tell the NP that you would like at least to have one visit with your onco. And I would always ask why do I need this test. For now, I am getting the scans and MRIs every three months.
It is a damn shame that this is the way our medicine is heading. Continue to stand up for yourself!!
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