Hi all, for those of you who read my post a few days ago, you all know I was trying to decide if I want a new oncologist. Well I took everyone’s advice and talked to my aunt, who agreed to come with me. Then I made a list of specific points I wanted to talk about.
I was so nervous but I did talk to her, beginning with asking if she knew about my hospitalization and that I was surprised I hadn’t heard from her. She said she dropped by when I was having my radiation (my last day there) and that she talked to my caregivers there. My roommate never told me this so I have no idea how true this is.
Then I spoke with her about us having different styles and that I wish she would give me more details when I had my PT/CT scans every four months. She said she was a more big picture doctor and rather than talk about the details, she usually just told me if there was anything major but she said she new I read the radiologists summary online and she figured if I had any questions I’d ask.
Now for those of you who read radiologist reports, they are very confusing. Particularly FDG Avitity, which seems to show up in good places and bad places. I never understand what it means.
I also told her that it’s hard to understand the size of my tumors when they write in in centimeters and how I wished she would physically show by using a physical object to show me what exactly the sizes are.
Finally I asked about bone lesions, do they mean something is growing on my bones or does it make a hole in my bone? I asked why it made my back hurt so bad. Was something growing on my rib which was pushing on a nerve in my back. She just said they are cells from the breast that spread to the bone and the scans pick up these cells. But again I wanted to know if it was something growing on the bone or was it something that was reducing the bone? She just couldn’t get what I meant.
I asked if when I went online to read the radiology report, could we go over it line by line so she could explain it. (Do any of you get to see your actual scans or do you just get to see the Radiologist’s report?) She said she wouldn’t have time to go through it line by line and just to let her know what I had questions about. Well, I often question everything!!
The same with blood tests. Often items appear red and while the numbers aren’t that much different from the norm, I’d like to know know what those meant and if it was ok that they were off. I’m tired of having to look up everything on the internet. She said the most important things were my tumor markers and mine were pretty low and it’s all about looking at them over a range of time.
It ended by me saying I just thought we were very different and I really wanted someone who could provide more details about tests. She agreed and said she would ask her nurse to set me up with someone else (and I did get a phone call that afternoon with an appointment with a new oncologist who when I looked him up sounds really great).
Afterwards, my aunt said that she could sense animosity in her and that she figured someone had given her a heads up that I planned on having this conversation with her. My aunt actually said she wouldn’t want to hear details but that the understands that it’s what I wanted. She said I might never find a doctor who will tell me everything I need to know, but I know some people I have talked to have doctors that do that. She was happy I had expressed myself calmly and rationally. So all in all it went well. Although I went home and cried and then went to sleep because it really took a lot out of me.
What does everyone in here get from their oncologists for test information? How detailed or what type of results does your oncologist give to you? Or do you meet with a nurse who can help you read it?
I appreciate everyone’s help with this!!
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Lisa11171
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Good Job!!!! She is not the right doctor for you. Most doctors dont go in detail as you know they dont want to spend too much time because time is money. However, I think she does the minimum because my radiation doctor always tell me the lesions is reducing or increasing..... it's good or it's bad. About blood work they never go to tell u about unless it's really bad bc the majority time what is causing your issues is the meds... like example the months I was off of Ibrance my blood work was all green and once I start taking Ibrance again and now xgeva is another story. I have several red things. My liver is fatty now and I dont know why and my sugar was high. So I start doing intermittent fasting and my sugar went down to 80!!!! But I still need to find something to clean my liver. The meds usually will help u but also ruin your organs. There is not win win here. My personal opinion.....
Fyi... my other onc doc never told me about my liver issue. I have to review my ct scan and blood work and then I ask him what the number means and he told me. Then he said that I need to eat healthy and exercise but if I dont ask he wont have told me
Lisa - good for you for preparing a list of topics and following up. I realize that can feel intimidating. I agree you need a doctor who is more in tune with your style and concerns.
My one caveat — which doesn’t at all alter my support for your decision to find another provider — is the list of line by line items you offer is extensive. It could be hard to find a doctor who can have that kind of in depth, blow by blow discussion on a regular basis. Certainly you don’t want “drive by” appointments like you just experienced, but I wouldn’t be put off if a doctor reasonably says that an over abundance of detail is med school training level. My two cents.
I always ask for a copy of the actual test in CD form. I have all of my imaging CDs. I don’t know what I’m looking at, but if I ever go to a different doctor and they want to see the imaging, I have it. They should give them to you anytime you request it.
Whenever I have the test done, before I leave the facility, I ask to get a copy of the disc. They do it and send it to the doctor’s office for me to pick up. It takes a few days.
So happy you did it! I get copies of all my scans too & during my appointment my onc loads the disk & shares any pertinent information with me about my scan.
They can quickly read through the report, and focus on the important things in the report. I would be surprised if even this new onco can go line by by line. Even if you are only going once every 4-6 months, they have other patients that same day and that would take alot of time to do for one patient. So they read it and interpret for you basically what it means. From that one page report in jargon you would not understand, they read it and interpret it and give you the gist of what is going on. On one hand, you must be happy with your onco and on the other hand you need to be realistic in how much you can expect from one onco who has many patients in one day, even if you go every 4 to 6 months, there are still loads of patients that they have to see in one day.
So bring a notebook and write down any questions as they digest and interpret the report for you. I never get my blood work numbers and never have since I have been there. I was told from the beginning that tumor markers are not an indication of much whether they rise or fall so fine. I just need enough information to know it spread, it did not spread, there is some suspicious spots. But if they are not sure and they tell you there are some suspicious spots that they will know more about at the next ct scan, they you are going to be a wreck for that until to find out it is not anything to worry about.
Some patients just want the basic information and others want too much but in order to attend to all their patients, I think they set an allotted amount of time for each patient. But now you can start fresh but do not expect this doctor is going to give you all that you want either. That would be one long visit.
Wow, Lisa11171, that's great! Great info, terrific approach dealing with the doc/advocating, and perfect outcome!
Re: your question re: the tumors...most (but not all?) BC bone mets are lytic/osteolytic lesions, which eat into the bones, vs. osteoblastic tumors, that would like grow larger the way we often think of tumors, e.g. growing mass.
I'm non-scientific, so this is my layperson's understanding...hopefully someone better qualified will also answer. But I will mention that in my early reports, my lesions were called "lytic"...so since then, I picture them eating, not gaining "mass".
As has been noted, I look at a ruler or google "what is 5 cm?". But, you should not have to do this, for sure.
Like you, I scrutinize my radiology report and agree that FDG/Avidity numbers are confusing/meaningless in isolation. From what I understand there is great variability in these numbers doc-to-doc, machine-to-machine, e.g. the calibrate the machine, which I think of as similar to turning up/down your screen brightness. I've experienced halving/doubling of stable tumors at different facilities. So if you've been going to the same place, what matters is the change.
I'm sorry that you had to go through the nonsense, but it sounds like you've had a really good outcome, so kudos to you!
Best,
Lynn
in reply to
p.s. I DO get to see the actual scans, and they're fascinating!! I did not have to download any special software or anything, yet I can move THROUGH my body, in whatever direction, and see these lit up tumors (lesions?)! Not to mention all the other bits of me, it's crazy! I actually whipped this out at a social gathering...yes, I'm THAT fun! But it was a geeky crowd...it reminded me of a movie from the 80's/90's where miniaturized people sped through someone's arteries! (I'll never remember the name, won't even try!...It was a comedy, I think).
So I highly recommend doing this, if you can. I've always mentally "engaged" with my cancer, better to fight "him"...the visuals help me do this.
Hi SoCalLady (lucky you! Southern California? I spend as much time there as possible!
For the one place I go, there is a patient portal specifically for the "diagnostics imaging" practice. This is separate from the patient portal for my oncologist.
For the other place I go, it is one patient portal and I can view my lab results, scan results, appointments, etc.
For both, I can click on a link to the report or one for the image.
Again, I was so surprised that I did not need to download software. "Back in the day", i.e. when first diagnosed, I had CD's with my scans but could not read them on my computer.
I hope that helps/hope you are able to access them....
Good for you♥️As a nurse I can often target what I want answered but as a patient I find out things in pieces at times. It can get crazy; it is scarey to begin with but then confusion can add to the anxiety.
Sometimes there aren’t clear answers either and it can get frustrating. I agree with Sandra to a degree. I don’t think any dr will go line by line so don’t get discouraged. I don’t think you n the doc were a good fit.♥️♥️💕💕
Good for you for changing docs. Like so many above, line by line is too much. You could be in there for hours discussing things like bilirubin... It is very scary in the beginning of this journey, so please know we all do understand that.
I think when you find a doc that you trust, you'll find comfort there and not need to question everything. It sounds like you might be scared she's missing something so you want to be able to catch it. The new doc will help.
Good for you! I know that I can think about confronting someone nicely but when it comes to doing it I can turn into a coward! And since I am an introvert, doing something like that makes me very tired, so I understand how much it can take out of you.
I think you need to ask for a longer initial meeting with your new doctor so he/she can explain line by line. If they just don’t have time, ask if you can break up the explaining into two sessions. Once you go through the whole thing once, and understand why they don’t worry about things being a little off in some tests, then you won’t have to go through them every time. For example, blood sugar can vary depending on when and what you ate last, so they probably don’t worry about it unless it is consistently up. Mine, even fasting, runs about 100, the high side of normal, but it has been that way for decades! There is a reason it is a range of numbers and mine is just on the high end of that range. Once you get to know the facts...take notes if you have to, then you won’t need every single thing explained. But if nothing was explained in the beginning, of course you would worry! With my nurse practitioner, I usually stand behind her at her computer and scan down that day’s results and if there is anything that I’m unsure of we stop at that and talk about it. It usually doesn’t take that long. Both my nurse practitioner and my oncologist will give me as much time as I need.
In return for giving me the time I need, if I have a month with not much going on and not many questions, I’ll tell them to go get caught up and not spend as much time with me. They appreciate that I think of their time as well. I can tell when they have come to me from a patient that got bad news. It’s not fun for those doctors who care and mine is one of those! He’s also dealing with a 13 year old son who has decided dad doesn’t know anything anymore! Oh the trials and tribulations of teenagers!
Anyway, good job, now rest, make a plan for learning what you need to learn so you will feel less anxious each month. It will get easier. I’m proud of you! Elaine
Think.its a basic,we all need to be our own advocates. Learned this way back when when parents were older and faced various health challenges.
Or a good friend or family member.
With that said,I feel.blessed with an oncologist who is on the ball, and a good person. Like most specialists over worked....but he hasn't lost his humaness,sensitivity.
Good news,sounds like you made the right move at the right time. GOOD FOR YOU
Well, I agree with you if you do not feel comfortable that you are getting answers that you understand. I told my own onco a few weeks ago that I feel like I leave not not understanding or getting different reasons and I would like her to be upfront and honest with me. She did apologize.
On the other side, playing devil's advocate, you cannot be expected to have her go line to line on every report. It would be time consuming if she had to do that for every patient. Just the facts. I never seen my scans. I mean that is what the report is for and the offices on the onco floor are not set up to see xrays. And who is to say this doctor is going to spend that much time with you.
But if you are upset it is your choice to get another onco. I am sure this onco told the new onco why you want to change. Make a bullet point reference as to what you would hope the new onco would tell you. I read that most oncos in cancer centers have a minimum of about 15 minutes for each patient because they are given so many on one day. So now, I take a book with me and write down what I want to know specifically that day, otherwise I forget.
It may not be animosity the onco was generating, but I am sure, no matter who you are, if she thinks she is doing her best for her patients, and one is not happy and wants to change doctors that she may be human like the rest of us and take it as an affront because that is the way she works with her patients. But she recommended someone to you and she probably told him why.
Will the new doc be at the same cancer center or a whole new center?
Good luck with this new onco and let us know how it goes.
So happy for you! I can only imagine how hard your conversation was, but you did it! If you google, “tumor size chart fruit”, you will see which fruit illustrate the size of your tumor in centimeters. For example, 2cm’s is the size of an almond and 5 cm’s is a lime. Also, I have found that the PA has more time than the Onc to spend with me, so I get ask her a lot of questions.
My Oncologist I had in Oh was awesome. I had him for 5 years. In the examining room he had computers and would show me anything I wanted to see, and answer any questions. He was great and did a lot of breast cancer research. We moved to South Carolina and I've seen him twice. He's nice enough but just brings a small folder in the room and talks to me. If and when what I'm on quits working I will be travelling 2 hours to Charleston to see a breast cancer specialist.
Good for you. I hope you will be happy with your new onc.
It is so important that we have faith in and are comfortable with our onc!
I'm a big picture kind of girl so my onc works for me. If I have a specific question she answers it simply and directly!
Hi Lisa,
I think you did the right thing and taking your aunt along was a good idea. You have to feel comfortable with your oncologist and be able to trust them. What's the point if you do not get on?
My oncologist does not go over every line of my radiologist's report (I've never seen the scans, but plan to ask to see them next time if I remember!) but she will answer any questions I have about my radiology or pathology report. So I am not sure if your new oncologist will be able to go over each line with you.
In terms of measurements, would it help if you were given measurements in inches? What's your preferred method? Maybe you can take a tape measure with you and that can give you more of an idea of the size of tumours if that will help you. We go by centimetres in the UK, but if you are not familiar with the measurement then it might help having a tap measure or another way of measuring tumours.
I'm sorry your oncologist projected her animosity onto you during your discussion. While I do not think that was fair on you, she was probably feeling upset that she had to have this discussion with you and lose you as a patient. She may have found it just as hard as you did. I hope that your new oncologist will be better able to meet your needs and requirements.
We really need to be able to advocate for ourselves and be vocal about what we want. I called my CT department earlier this week so that I could book my next scan. I was told that my oncologist had not yet put the referral in, so I called and spoke to her secretary who questioned why I wanted a CT scan. I told her I get them every three months, and I needed to book my next appointment around my work commitments before seeing my oncologist on 24th February, which is when I would be getting the results. The very next day, I had a call back from the secretary and the referral had been put in, so I called the CT department back and booked my appointment for 14th February. I can't just wait for a letter to arrive. I have to fit things around my work and other commitments.
Your doc should be able to explain enough to yo so you understand reports. Going line by line might be too much all the time. Same with lab tests. With metastatic breast cancer and meds we take we are at risk for low wbu and low and that puts you at risk for infection your at risk for high calcium but it probably won't happen if uh our taking med for your bones your at risk for low tv low hgb low hct which means anemia.low platelets which can interfere with healing and blood clotting. Bone cancers can be a tumor right on bone or can eat up bone you have. Bones hurt alot if they get inflamed (like in cold damp weather) the bones swell a little and hurt alot. I was a nurse practitioner so even though I know alot of things I told my doc I do better with more information than with less when I want to see a scan I ask and get to see it. He explains the difference in how he looks at results and how the radiologist does. You need the big picture but you need details for your sanity.Ive had to switch doctors twice already. Don't be afraid to advocate for yourself and do what you need to do. You can check your hospital record and see if your doc wrote on your chart see if she claimed to see you or contributed anything to your care. You can also see if she got paid for a visit or anything. If you are in a hospital you can tell your docs its.ok to wake you that you want to see them. They should also tell a staff member to tell you they were by to see you and missed you.
I was crying when I read your post because I was so proud of you! Good for bringing your Aunt (as someone here suggested) for support, strength, and an objective view. I go to my onc once every 4 weeks and take blood tests a few days before so it has time to arrive in their office. Same thing with a CT or other scan once a quarter. As soon as the nurse weighs me and puts me in the office, I ask for a copy of my blood test, CT Scan report or whatever. I then have plenty of time to scan the reports and look for anything that is not in range and I don't understand. He'll then talk about the highlights of the report and I write notes right on the report. I keep all my reports so I can compare them from a prior one and don't have to ask the same questions over and over. I know that a lot of you don't worry about markers (everyone's body is different). However, I do worry about them because they have been over 1200 for the past 6 months, which tells me my prior meds were not working. Also, I'm concerned about my glucose (sugar), which was up to 315 last time because I'm on Piqray. I rejoiced when my white blood counts went back to normal after I got off Ribociclib.
Lisa, you had great response on this posting and everyone shared a wealth of information. I also have a spiral notebook for this website, so when there's a posting that affects me or may in the future, I write the comments down for future reference. I have found that when I try to find something I've already read, a lot of times I can't find it. Also, the knowledge I get from all you ladies gives me the tools I need to talk to my onc. So, thank you all for sharing your knowledge and experiences!
Funny, recently I have been not so confident with my onco and some of her decisions and remembered this post from you. I was thinking about it though and wondered was it such a good idea to have the onco you are leaving recommend somebody to you. I don't think I would want that bc I am not sure what she would say about me and obviously she would be telling the new onco things so I would hate to walk in with them having a preconceived notion about how I am as a patient. I would like to find an onco on my own first, tell them the reason I want to switch, and then let my present onco know that I have found somebody else. Did you look for any new oncos on your own or were you willing to take the recommendation of the onco you told you felt was not a good fit.
Hoping you like the new onco better. I would have to leave the cancer center bc I would not be comfortable seeing my old onco when I would see my new onco but I love the cancer center as a whole, more for the resource support they provide. So confused.
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But it was a geeky crowd...it reminded me of a movie from the 80's/90's where miniaturized people sped through someone's arteries! (I'll never remember the name, won't even try!...It was a comedy, I think). 
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