Hi everyone, it’s been a while since I’ve posted but i do follow everyone’s posts. I’m seriously considering getting a new oncologist. Whenever I have called in the past with a symptom or side effects, I am mostly told “oh that’s not not a side effect” or “it doesn’t sound cancer related”.
Well a few weeks ago I called because I was having excruciating back pain. My previous scan of about two months ago showed a new lesion of my left rib. Well this pain was directly behind my rib and the pain level was at a 10. I called the Oncology line which promises a doctor or nurse will get back to you within an hour. When the nurse called and I told her about the pain she said she would talk to the doc and call me back. She said it didn’t sound cancer related. Then she called me back to say she had talked to the doctor and once again, the doctor didn’t think it was cancer related and to call my PCP who handles my pain meds.
I called my PCP’s office and after telling them about the pain they scheduled me for an appointment that day with one of the doctors in their office (all of my providers week in the same hospital). When I went to see the doctor in my PCP’s office he could tell I was in pain. He asked me to point to where it hurt and after I did he immediately looked at my file that was in his hand and he said it was exactly as he thought, this pain was coming from the new rib lesion and he sent me to the ER to have me admitted immediately. I ended up spending four days in the hospital in the inpatient Oncology Department where they helped control my pain, the Radiation Specialist came to visit and said he thought a session would help and scheduled me for immediate prep and radiation while I was there.
My PCP came to visit me, Palliative Care came by Talk, my Psychiatrist called me to see how I was doing, and I was assured that once you are admitted they notify your entire team. Well, someone was missing from my list of visitors/callers: my oncologist. Even after I was released on January 3, I still have not heard from her. I have a scheduled appointment with her next Wednesday, January 22 for my monthly check in, blood work, and Faslodex injection.
I find it unacceptable that she has not once contacted me. Or even had her nurse call. I’m tired of being brushed off for anything I try to contact her about. I talked to my PCP and told her I wanted a new Oncologist and she said that was my choice, but she feels I should at least keep my appointment for next week and to talk to her about why I am considering switching.
I plan on telling her everything. That she totally missed a real cancer symptom, that I’m tired of always hearing “Don’t worry about it, it’s nothing” whenever I call, and her lack of thoroughly going through my results each time I have bloodwork or a CT/PET scan. And that because of this I would like a new oncologist. I am nervous because I don’t like confrontation, but I don’t fear I am getting the care I need from her.
Does anyone have any suggestions of how I should handle this or specific things I should say? I’m afraid I’m going to break down and then she’ll just blame it in my depression. I really want to be firm and understood but need concrete things to say. Any help would be appreciated.
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Lisa11171
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It’s possible there was a miscommunication, so before you do anything drastic — since changing oncologists midstream can be difficult— go ahead and hear what she has to say. For simplicity’s sake, I hope it was just that. But, I’m also of the opinion that she better have a darn good explanation. If not, find someone else.
Wow. That would really upset me. How complicated is it to switch? Why does your GP suggest you stay?
My sense is if one is at a decent sized cancer facility, the standard of care—drug protocol etc, seems basically the same regardless of Dr. Bedside manner however can vary and is crucial both for psychological well being as well as to avoid medical mistakes or overlooked issues. I too am considering switching for that reason. It’s hard to have direct contact with my oncologist. She texts during appointments, that sort of thing. My strong sense is research is more her priority than people.
My metastasis was misdiagnosed for two years by GP doctors saying “don’t worry” or it’s not cancer related about this or that. Especially while I’m stable, and not that “interesting “ to treat, I am very worried about slipping through the cracks so want an oncologist who prioritizes face to face interactions rather than communication through a portal or layers of. Nurses. Of course there’s a lot of factors
I’m so sorry to hear about your pain and the experience you’ve had with your uncaring oncologist
I think you need to (if possible) find out if the nurse actually contacted the oncologist after you rang....just in case she’s lying and didn’t pass the message on!!... she may be acting as a barrier to ‘protect’ the oncologist having to speak to/see patients between scheduled appointments
if she did pass on your message then I think you should say how upset you were....she knows what the outcome and treatment you had and most likely feeling remorse and probably feeling apprehensive about the next appointment as much as you are
If she has any empathy then she ought to apologise to you when you go into her consulting room....if she doesn’t say anything then I think you should ask why your concerns weren’t addressed....explain how you suffered physically and mentally from the stress involved and see what excuse she comes up with
I wonder if you would feel more assertive if you took a friend or relative with you as a back up...in case you get annoyed/upset
I would feel just the same as you...I hate confrontations and it goes against the grain to confront a senior health professional...especially when we’re brought up to have respect and admiration for them
However it does seem that your oncologist doesn’t deserve respect and needs to be told how unhappy you are being brushed off like that when you were in so much pain
I wonder if she’s like this with all her patients?... if so she needs telling!!
I second Barb’s comments! If you can bring a family member or friend or advocate to help you explain the situation firmly & objectively. Make notes ahead of time to talk from to stay on point & it will help you get all your points made. ❤️🙏❤️
I always take someone with me to my appointments. Basically because I am afraid I might miss something. I think it does telegraph a message however. I get really good, thorough care.
I have delayed diagnosis bc my oncologist ignore my symptoms and lump. I went from stage 2 to stage 4. So I dont have any consideration with hungry money doc that we are only one more check. I will change the onc and make sure to go Google and review the doctor of your choice. I think my new doctor know what went down with my previous doctor and he run to check me everytime I complain about something. Please let her know that her incompetent can cause your life. I hope you get better!
Hi Lisa -
Gosh, I hopped on this morning to take a scan before running out for an appt, but your message outraged me, so I'll try to get out a coherent - but quick - response!
First, I am so sorry for what you've been going through, not just the recent nightmare, but also months of dealing with dismissive medical professionals.
Likely disjointed comments:
My first question is, similar to one I scanned above, do you like your actual doc a lot? A little won't cut it.....but a lot might change your plan. My sis had a serious issue with one of my doc's nurses and told him about it...she ended up (justifiably) "released to her destiny", which is my corporate days was a euphemism we used for "fired". Not due to my sister's complaint alone, but cumulative effect of complaints....so you are doing a service to your community by letting the doc know what happened so that s/he can make the right decision re: this staff member.
Second, while we respect our doctors' expertise (just as we do our auto mechanics', etc., and just as others respect ours), at the end of the day, they work for us. It's like when you hire an attorney or accountant. We pay them, either directly (unlikely), through insurance that we pay for (or our employers pay for as part of our compensation), or we and our fellow taxpayers pay for, as per our legal and societal agreement. Too wordy but, again, they work for us. So of course we have "customer rights" and can expect/demand that reasonable expectations for service be met. And you have a valid and serious complaint.
Re: how to handle the meeting: I'd bring in notes, meaning a notepad or something with the key facts and dates/times written down. If you can print something out and put it in a folder, not only does this make you appear more serious, I think it will make you feel stronger...You can reference it for the facts, but also sprinkle into your notes the key non-factual points you want to make and perhaps wording/phrasing you'd like to use.
In making your comments, I'd try to be professional/a bit dispassionate, e.g. don't repeatedly use the nurse's name....Just say "the triage nurse" or "the individual who answered the phone", e.g. I'd refer to the shortcomings of "the practice", for which the doc is responsible...meaning, she is responsible for the actions of the people she supervises.
I'd go in with a or some suggestion(s) re: further action, even if it seems unlikely, e.g. "I'd ask that you give me a contact other than the nurse I dealt with. I don't have confidence in her." or "I don't know if this can be dealt with through re-training, process changes, or personnel changes, but it would help me to understand how these matters will be dealt with differently in the future.". This signals to her that you expect more than simply too vent....you expect action. It will give you insight to see how the doc decides to handle it.
These are my immediate thoughts, but I'll probably stew about this all day, on your behalf (! ), and might loop back this evening with more....
Again, I'm so sorry! No one should have to deal with these issues, on top of everything else
p.s. If you end up shedding a tear or two, I'd not worry about that. Just course-correct. "I'm sorry to get emotional, but this treatment has really affected me, I'm sure you understand and agree that this is not what the effect that you want your staff to have on patients...".
I hope you're feeling better soon re: the pain, physical and emotional!
Thank you. It’s too bad because I’ve had the same PCP and Psychiatrist there for 15 years and they are both wonderful. So this is my first experience with a doctor I just don’t feel is meeting my needs. But both my other providers think it best to talk to her directly first before getting a new oncologist. I will definitely be staying in the same hospital, but I’ll feel strange if I see her after I’ve gotten a new oncologist.
Lisa don’t worry about seeing her after/if you change...patients often change to another doctor/dentist whatever...do what’s best for you...it’s her own fault for not treating you properly in the first place and might even make her improve her relationship with her other patients
Stand up for yourself...you’re the most important person in this scenario
Lisa...If you switch onc's, SHE should feel strange not you. If it comes to that, it means she failed to deliver - directly or through her staff - the care that you deserve. (my 2 cents! ). Lynn
I'm with Barb in that If I know I didn't get proper attention and want to change doctors, why should I have to speak to my old doctor aka confrontation, and not just get my requested change. Aren't we dealing with enough that we don't need unnecessary confrontations? I know I am fixing to go back to the onc in March and get put on palliative care and furthermore, I'm going to tell him I will do whatever tests he likes but I'm tired of being injected for everything, so whatever you can do WITHOUT injecting me, go ahead, but I am stage 4 and enough of these injections, I'm not a test subject ... or AM I? Plus they had a thing on the news the other night about sepsis and 1 in 5 people in the world are dying from it. Guess one of the main ways it is being transmitted? Injections! I had already decided I want non-invasive procedures whenever humanly possible before I heard this and it just cemented my thoughts. 270,000 people died last year of sepsis in the US, it ranks #1 in deaths above heart attacks and cancer. I have the snapshot from ABC news if anyone missed it, I'll share it. I too am upset that you were mistreated and that is what it amounts to, lack of care! Get your new doctor NOW! God bless you! xo
I wonder how that works. What would you ask a new oncologist? I worry that since they all work in the same place that I would be "tarnishing" my onco's reputation if I had to explain why I wanted a new onco and wonder if the new onco would think of me as a "trouble" patient bc I switched to another one in the same dept. I don't know how that works. How do you interview a new onco or would they just assign another one to me. Also, if they work in the same area, maybe they all kind of work like that since they may have numerous cancer patients. My onco will tell me many times to ask your primary doctor to prescribe this to you. I wonder why she will not do it herself.
Thursday was the first time I think she "heard" me about the back pain and the depression it is causing in addition to my swollen foot. My primary is old and halfway semi-retired. He has not been my primary doc for a long time, but the one I had died unexpectedly and he knew him.
I did go off a bit on my last visit (before this week) and said I feel like I walk out of here, never knowing quite what is going on as you always appear vague in your response. She did apologize which is something I guess. This time she said she was going to get me a CT scan of my lower back (which makes it so I can hardly walk 1/2 block without pain and have to stop). Since I live alone, do not drive and have no family/friends at all in Brooklyn, I am alone so everything is harder now that I feel stuck in the house. So I am hoping the CT scan (I turned down the MRI bc I can't handle that) and the palliative care (which I still am not really sure what they do) can help and give me more time to address my needs.
I think the points that aamkearns brings up are very valid. My understanding (though I’ve never done it) was that switching onc within a facility can perhaps not necessarily work in your favor.....but I could be wrong. Often they do talk amongst themselves about patients.
Regardless, it’s not like you owe the doc a chance but I think for yourself you’re best to explain how you feel about being brushed off, all VERY valid points, and then see how she responds before rushing in to say you want to change doctors. Someone else’s point was great. Perhaps there is a gross breakdown of communication between nurse and doctor. Try to be factual when you talk to her to help yourself get through the conversation. (Not that it matters if you cry but it will be easier for you to get out what you need to say)
Then perhaps you could state that you’ve been “considering” if you need to get a new onc if things are going to continue like this. Assessing how she responds is key.
The other thing to consider going forward - if you need to call for something that you think is truly something that needs attention, and you get brushed off, perhaps you’re being too polite on the phone? IE Accepting what you’re told (even if you don’t like it)? Perhaps you should try to be more assertive at the time of being brushed off, to clearly state that the issue is pressing. It will lead to more questions at the very least, and then perhaps more action. I feel for you not having people around to help you out. We are rooting for you when you see your doc this week!
p.s. re: my early statement re: liking your doc a lot vs. a little....this relates to whether or not your fire her or try to work it out, not to the approach, in general. Take care....
Thank you all. You’ve all given me some great advice and ideas. I will work up the courage to make a list and bring my notes with me when I talk with her. This will help and I’ll consider asking my mom to come with me.
I had the same issue when my first onc missed the large lesion in my backbone. I had reported that it was more painful than a kidney stone and she prescribed oxycodone and rolled her eyes. After finding out it was a met (and I was really Stage 4, not stage 2 as she thought), I got a new onc.
I agree with those who have advised to take someone with you.
Prep the person by ensuring they know the background and facts, what part you'd lke them to take (supporting you) , and the outcome you want. You're unlikely to get an apology as that could be seen to them as admitting a medical mistake. It sounds as though you'd açcept telling her how you feel and what youre going to do about it.
That doesnt have to be said confrontationally... eg
"You'll be aware that ive recently been in hospital for x'
I did mention the pain i was experiencing at our last consultation and the scan showed i had a lesion on my rib.
The connection between the lesion on and the pain was made by 'y'
Because of this and the various times ive felt the pain ive been in has been undersstimated or disregarded i feel i would benefit from changing my oncologist.
What are your thoughts?"
Listen and if you still decide to change say so.
The example above is not meant to be prescriptive, just a guide.
Everyone else has chimed in with excellent advice. It is so hard when we are ignored, or symptoms are overlooked. We are our own best advocates! She works for you...if she worked at your company there would be a performance review!
Oh gosh. I’m so sorry you are so worked up. We have enough to worry about. Getting angry should not be the normal when you see your dr or talk to the nurse there. I completely agree with Barb and Lynn.
I am distressed to hear what you are having to deal with because unfortunately it’s a story that I’ve heard and experienced all too frequently my initial oncologist failed to Diagnose my metastatic breast cancer it was diagnosed by a physiatrist whom I went to consult for pain in my foot interestingly he had listen to all of my complaints when I had said that I had pain at night in my right hip he sent me to see an orthopedic physician who said there was absolutely nothing wrong with my hip and nothing else would happen I would never need hip surgery for example and then I started having a sudden loss of urine in my bladder was full so he sent me to see a urologist who did all the tests and said there was nothing wrong with my bladder anyway
Well my current oncologist is a very pleasant man he is very busy and I really have to pull information out of his head for example I’m at the end of the period where ibrance is not working and he’s gradually changing over my meds and because I had a fracture at S3 he ordered another scan but only later did I realize that the scan that he ordered was a head scan which put me in an incredible state because obviously he’s looking for brain metastases I think the idea of going to see your oncologist with some support is a really good idea this is the idea of taking notes my sense is that not all but many oncologists are on the Asperger’s syndrome that they have a considerable amount of difficulty with empathy and yet they want to keep on treating and treating and treating I don’t know if you’ve heard the joke why why do they put cancer patients in coffins the answer is so that oncologist can’t Do chemotherapy
The reality is you have to take care of yourself I suspect that many oncologists are on the Asperger scale that they have some difficulty with empathy however I would also add that their work is very difficult and that they are under a lot of pressure and it physicians have the highest rate of burn out in suicide of all the professions so take care of yourself
That is the truth. I always remind myself that I am not her only patient and I am sure for her some days are worse than others if she has to tell a patient that the treatment is no longer worker. They spent alot of time to train and become an oncologist to help others, but sometimes their hands may be tied to do the rules and protocol of the cancer center that they are working in.
I agree that oncos have a multitude of patients. I read an article (wish I would have saved it) than oncos in large cancer centers, are expected to see a number of patients every day and limiting the time period for each patient to about 15 minutes and that they feel pressured. At some point, I guess they have to detach themselves bc they are dealing with patients under a lot of pressure and they have to also deal with giving the news when it spread and dealing with the patient's anguish. I remember my very first visit with this onco (after I was diagnosed) and I was sitting in her office and she popped in and said would you mind waiting another 1/2 hour as she had just given another patient some bad news and they were not handling it well. So I do not think they have Asperger's syndrome as much as they need to detach themselves to a certain degree otherwise they would go home in a severe state of depression. Similar to cops who have to put their emotions aside when they are investigating a horrible murder or something.
On one hand, you will have patients that complain about everything, even a hangnail and then there are those patients who rarely complain about anything, so if they do, more attention should be given.
They spend a lot of their time to become trained oncologist bc of their desire to help people with cancer but I think the reality vs. what they are taught changes the way they deal with patients.
And if the cancer center expects them to see a certain amount of patients in one day, they may feel more pressure than we are aware of. My onco will tell me not everything is related to the cancer (probably true to some degree), but I always tell her first bc I always assume it is. It has to be hard to tell a patient that it is spreading or the treatment is not working anymore and deal with the aftereffect of that and then go on to the next patient.
R U all in the USA, I too am in a similar situation I dont have as an Oncologist as she is long term sick, my cancer nurse is long term compassionate the only people I am dealing with is the receptionist at the cancer unit and pharmacy. I have not seen my Oncologist since May 2019, I have an appointment end of this month where I will be talking about lack of care. Has anyone changed, I am NHS patient, and was it hard to do?
In US, so much easier to change oncos, get tests done quickly. Even though our medical is more expensive, we have so much more freedom with respect to getting tests approved, switching doctors, etc. That is a long time to go without seeing your onco. So far and its been a year and a half, its my onco herself I see. She had mentioned in the beginning that after a period of time, I would be seeing her physician's assistant but that has not happened yet, because it seems there is always something more going on with me. I still also get CT scans every three months.
It’s very easy to change onc in UK. One of the joys of the wonderful NHS is not having to worry about whether your insurance covers. In your situation I’m surprised you haven’t been given a new one already. Are you not able to contact your onc’s registrar? It sounds like your centre is not following NICE guidelines. Depending on how large your centre is, it might mean changing hospital. It is totally unacceptable that you’ve been left without proper support for so long. I would bring it up with PALS.
I don't have anything new to add. I think you have gotten a lot of good advice. I hope you have able to get a better team. Blessings Hannah
OMG. Is your onco Dr. B from Brooklyn? I swear it sounded like I could have written the same email. My onco NEVER responds to calls or emails (which I rarely do). She told me from beginning in case of an emergency, like you, I am supposed to call the cancer center (which is closed on weekends) and somebody would be on call. I am also unhappy with her (a friend had her, found her flaky and switched to Sloan Kettering in Manhattan. I wish I could do that but I have medicare/medicaid which they do not accept.
I love the cancer center itself and it is not too far from where I live, but all the oncos work on the same floor in the same area and I have no idea who to even talk to. I am unhappy with her bc of several things that went on.
Her response to everything is the same. Oh, go to your primary for that even though I know its a side effect of the meds.
I just have no idea about how to get another onco. My onco is going to get me into the palliative dept. also bc I have been suffering from severe lower back pain and its affecting my quality of life. My left leg is severely swollen for several weeks and my foot is so swollen that I cannot get my foot into closed shoes.
I am going to read the responses to you and hope to get some tips. Let us know how it turns out. I hope you are able to find somebody that makes you feel more comfortable. But it sounds like exactly what I would have went through although my PCP would NEVER come and visit.
I am going thru an oncologist change as well. I was seeing a great doctor who had a great nurse, but over time he changed his focus from breast cancer to lungs or liver. When my breast tumour started to grow they thought it best to have me see someone focusing on MBC. So I have seen the new doctor four times and each time was more disappointing. She always drops the ball. I think her "rough shod" nurse is to blame. Certainly these oncologists are overworked but with a good nurse behind them and good doctor skills, this should never happen.
I went back to the nurses I trusted and asked for advice and they felt I had a right to change. It does happen for a variety of reasons.
I asked the nurse from my first oncologist and she will ask if I can go back there.
I don't have to talk out the problem with the other one. That is a bigger problem then I can solve.
I would also ask the patient advocate, if you have one, for advice. And I think I will talk to my patient advocate anyhow, just to let them know my thoughts on my situation.
Cheers, June S.
I replied earlier but my onco (since I am experiencing lower back pain) is making me an appt. with palliative care. I am under the impression that they are supposed to help me manage the pain and other feelings and symptoms I am going through. They are an addition to my onco as I will still be seeing her but I expect the onco cannot handle my regular visits in addition to monitoring the pain and other side effects I am experiencing. That is where the palliative care comes in. They take over, as a team, those matters which the onco herself cannot handle because she has numerous other patients. The fact that the palliative team was in contact with you is a good sign and I am sure they do a report and that the onco has it but I can't imagine that an onco has the time to visit or call everybody who has some symptoms that are affecting their daily life and if the palliative team thinks it is very serious, they would let the onco know. I am glad I am getting a CT scan plus going to start with the palliative team also to deal with this back pain which is affecting every aspect of my life. I know my onco is way too busy to get back to me at times when I need it which is understandable considering the amount of patients she has.
So I think it's good that the palliative team reached out to you and I think that would be in lieu of the oncologist. At least with the palliative team, if I am having new pain or symptoms, I am thinking I would be able to reach out to them first and if they think necessary, they would get in touch with the onco. It would be way too hard for every onco to do this for every patient that they have. Just not enough time.
I'm more than impressed that your primary and psychiatrist followed up with you. That is a blessing I don't get for sure.
Agree you should tell her how you feel. Maybe have someone else in the room with you to help communicate and just be a support for you. We def. have to be our own advocate or have someone who can do that for us. Wishing you the best. Let us know how it all turns out for you. Hope you're feeling better.
Thank you so much for your help. Will be taking it up whom ever I get to see on 29th of this month. Great idea about PALS, will contact them. Thank you once again.
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), and might loop back this evening with more.... 
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