PRIVACY W/YOUR APPT. WITH ONCO

I am just curious. In the very beginning of my treatment, my onco (she) told me that her Physician's Assistant, Yan (male) would come in to talk to me first usually and then she would come in after or possibly after a while I would just be meeting with Yan only (but that never happened...bc there is something new after every CT scan it seems). He was an idiot. When I complained about how sick I felt on my week off and was bed ridden from the Ibrance when I first started it, he told me "he never heard that before." Seriously???? Then he told me in the beginning after looking at my lung biopsy that I did not have stage iv (this was after my being at the cancer center for about three months and my 1st time talking to him.) I was furious and said are you kidding me. The breast cancer surgeon tells me I have mets to my lungs, sends me to the cancer center and I have been on this medication and you are telling me I do not have stage iv. He got nervous and left and said the dr. will with you shortly. I was annoyed and asked her and she was angry that he spoke to me and she said you do have stage iv mets and it is in your lungs.

After that Yan never came in the office when I had an appt. with her and I dont think he works alongside my onco any more although I see him on the floor of the cancer center and he nods hello.

Anyway, I digress. Once my onco had a female resident in training come in first and ask me some questions and then my onco came in.

Now, starting about three months ago, some lady came in with her (no jacket...just a regular shirt and jeans) and she said something about her but I barely listened because I figured she would just be here for one appointment or whatever.

But now my last three visits, this lady (in her late 20s/early 30s) comes in every single time with her laptop. She does not say a word and just as I am talking types into the laptop. I am a bit annoyed now bc I want some privacy and there are somethings I want to ask or say without having this woman in the office at the time of my appointment.

Do any of you have a second person in the room when your onco is talking to you or giving you results? I have no idea if this is the norm or what.

[Staysha]

Hi...

I had a resident come in with my surgeon during 2 appointments but my surgeon asked permission for him to come in and the doctor never left. The resident just watched and listened with no laptop or notebook. Only my oncologist’s nurse come into the appointment when I see him.

I know I would feel the same as you about the lady. I wouldn’t like it.

Sorry your dealing with this. We have enough to worry about.

Hugs,

Stacy

[Hidden in reply to Staysha]

Thanks. I had sent her an email saying I just assumed that that woman would only be there for 1 or 2 appts. and am not totally comfortable with her being there for every appt. as there are somethings I want to talk about or ask and do now feel comfortable. I THINK Its because my onco does not know how to use a computer or laptop. I asked her my height last time (I asked the blood testing technicians first but they told me to ask my onco) and when I asked her, she was fumbling with the computer and could not tell me (WHAT). So I think this woman takes down notes about the appt. on her laptop for the onco but it still bothers me.

[Lilykristymichael in reply to Hidden]

What? Your onco does not know how to use' a computer? I would be getting another doctor as fast as I can!!!

[Hidden in reply to Lilykristymichael]

I asked my onco yesterday when I had my appt. (and while the lady was there) and my onco is NOT a fast typist and is not as good on a laptop (she is 64) so she says that the young woman types up and takes down what goes on during our appt., otherwise my onco said it would take so long to be talking to me and also having to type up my responses, etc. I have seen her fumbling with the computer in the past so I do not think she is that well-versed. She probably just knows the basics and I would rather her be more experienced in treating breast cancer than a laptop so now that I know I am okay with it. (For the first time, yesterday I brought a notebook and I could see my onco was a little shocked.)

[Hidden]

Hi,

I can understand your concerns. I would feel the same way about the lack of privacy during your consultations. If you don't want this other woman there with you and your oncologist I would make your wishes known ahead of time to avoid an awkward confrontation on the day of your appointment. If you have not given your permission for her to be present, why is she there?

My oncologist often has one of her oncology nurses in the room with her during my appointments. That's because she examines me, so the nurses I see serve as chaperones. It sounds like this woman could be your oncologist's secretary, but it is still important to know why she is there and to ask her to leave if you are not comfortable with her being there.

Sophie

[Hidden in reply to Hidden]

My onco did mention the first time her purpose but I do not remember what it was. I just said I dont care but I assumed it would only be a visit or two, not a continual thing and now I do no remember what her purpose is but I see it looks like she is not going away. I did send my onco an email that I am not comfortable anymore with her being there, but my onco does not read emails. This time on Thursday (and I am not too happy with my onco anyway), if that lady comes in I am going to say "I forgot, I know you mentioned it but what is the purpose of this lady being at my appts. with you?" I truly forgot what she told me....but I remember thinking it was just for that appt. or one or two more and it does not seem that way now.

[Hidden in reply to Hidden]

Oh, I see what you mean. Your oncologist probably assumes that you gave consent for this lady to be there then. There is nothing wrong with having a word and just saying you would prefer your consultations to be private in future. It's about you after all. So if you don't like how things are going you have every right to speak up. I wish you well.

Sophie

[Hidden in reply to Hidden]

I asked yesterday (while the lady was there) and my onco said it's easier for her bc she is not a fast typist or very experienced with the computers other than the basic info she inputs in so she uses this lady to type up notes and our conversation or changes we discussed. My onco said if I had to speak with you and then also turn around and starting inputting the information, it would take much longer. So I am okay with that.

[Barbteeth]

I sometimes have an oncologist nurse sitting in and she helps with appointments etc

I would request an explanation why this person is there...you don’t have to put up with this if it makes you feel uncomfortable

Barb xx

[Hidden in reply to Barbteeth]

Definitely not a nurse. She wears dungarees and regular clothing, no kind of clinical clothing nor does she have a name badge. I am going to ask on Thursday if she again comes in with my onco. I just dont remember what my onco told me but I just said I dont care at the time thinking it was a one time thing or maybe two appts. but now it looks like she is there for every appt. So I will first ask her why is this lady here...I do not remember what you told me and I will then say I would prefer to have my appts. privately. Even with her physician's assistant and a doctor resident, they came in first to talk to me, then the onco came in alone. I am going to say I would prefer to have my appts. in private. No matter what her purpose is.

[Barbteeth in reply to Hidden]

She should wear a name badge!!! And some kind of uniform

My dental nurses all wear one so the patients know they are nurses and not reception staff or dentists/hygienists...seems all a bit casual to me especially in a hospital environment

Barb xx

[Hidden in reply to Barbteeth]

I asked yesterday (while the lady was there) and my onco said it's easier for her bc she is not a fast typist or very experienced with the computers other than the basic info she inputs in so she uses this lady to type up notes and our conversation or changes we discussed. My onco said if I had to speak with you and then also turn around and starting inputting the information, it would take much longer. So I am okay with that.

Also, the previous CT scan two months ago showed two holes in my spine (I have mets to the lungs). Now, and I am not sure if it has anything to do with the cancer, I am having severe lower back pain when trying to walk. I told my onco yesterday and think I had referenced it the month before when I saw her, but its affecting my quality of life. I do not drive, nor do I have any family or friends that live in Brooklyn so I am on my own. I told her I am becoming a shut-in because I try walking even just 1/2 block and my lower back pain becomes so intense I have tears in my eyes and I have to stop and lean on a building wall, or a light post or a hydrant and then start walking again, and then stop. I said it is affecting my life greatly bc I dont drive and have no one to help me and something as simple as going to the library which used to be a 20 minute walk for me is not almost 45 minutes bc of how many times I have to stop. I did not fall or hurt my back.

She is going to refer me to palliative care that has pain management. They better not tell me to meditate or some crap like that. The 800 mg. of ibuprofen I was getting for tumor pain, etc. stopped working. They did for a while but don't work anymore.

Unfortunately, my cancer center (Maimonides) has a non-opiate policy. You have to be close to death, literally, to even get one Vicodin. So I have no idea of what they will give me, but I know it won't be an opiate. You are lucky that they give you that in addition to the other pain meds.

She first asked if I could do an MRI and I said NO. (I am extremely claustrophobic and get panicked even with my regular chest CT scan so she is going to order a CT scan of my back.

[Barbteeth in reply to Hidden]

My oncologist speaks into a recording machine after I leave the consultant ing room...her secretary then types it up for the record...I also get a copy

Regarding your pain I find it ridiculous to not be prescribed opiates...downright cruel in my opinion...there’s no way I could function without them...some days I take a very low dose if I’m just sitting around but otherwise I too up with oxycodone or equivalent if riding/walking/swimming etc...it enables me to do some exercise which is mentally and physically beneficial....otherwise I would be confined to the sofa!! Evidence shows that it’s rare to become addicted to them if they’re used for chronic pain....anyway I’d rather be an addict than not have them...it’s not as if I have a long life ahead of me fgs!!!

I’m pleased you’re getting a scan...maybe some palliative radiotherapy will benefit you...you can’t go on like this...pain is so debilitating and depressing

All the best

Barb xx

[Arisgram]

I am a ridiculously private and modest person. I also have worked in healthcare my entire career, and my dad was a hospital administrator. I'm pretty sure that qualifies me as a difficult patient.

Often during my 9 years of treatment, physicians have brought in residents and nurses and random assistants into my exam room. I always smile, extend my hand and introduce myself asking their name and role. In many cases, I will tell them how nice it was to meet them and then say I would like to have this time alone with my physician. They usually look shocked. The doctor typically laughs. And, I get my privacy.

I have made the decision this journey is difficult enough without having to do things I simply don't want to do. Best of luck to you, and I'm sorry you're feeling uncomfortable at a time you should feel very safe

Andi

[Hidden]

I am going to ask my onco this week. I remember briefly the first time the lady came in with her, my onco mentioned something about her but I barely listened and just assumed it would be a one or two time thing. I do not think she is any kind of pharmaceutical representative bc we are not talking about meds during my appts., but it could be some kind of research study. I am going to ask my onco on Thursday when I get my CT results, but I am going to state that I would like to ask my onco a question privately so that the woman leaves the room.

[mariootsi]

I see my onc every other visit and her assistant in between.

Always see my onc for scan results.

But, I love them both and they both put my info into the computer... how I'm feeling, any new meds etc. before they examine me.

I would be upset with your situation though!

Hope you can rectify it.

[Hidden in reply to mariootsi]

When you say assistant, you are referring to a physician's assistant, correct?

[mariootsi in reply to Hidden]

Yes. She is an Advanced Practitioner Nurse. Very capable, knowledgeable, caring and very nice!

[Red71 in reply to mariootsi]

I have exactly the same situation and love them both too. My onco is a man and we never have a chaperone in the room, but I have been his patient for 9 years now and we have a very high trust level. I would be very unhappy if either of them change jobs! Elaine

[PJBinMI]

I have a very mixed reaction to what you've written. First, I think that anything that makes us uncomfortable needs to be addressed, in as friendly and non-confrontational as possible. Many/most medical practices have a person called the "practice manager" and you could call and ask to speak to that person and ask them to explain to you what that woman is doing in your appts and ask her to let your onc know how uncomfortable you are with her there and that you want time at your next appt to talk with him about it. I suspect that many of us here are seeing oncs at very different types of practices--solo practitioner, small group of oncs, cancer centers and comprehensive cancer centers, the top tier of cancer treatment centers in the US with oncs who see patients with one type of cancer. Different types of practices are going to have different other medical staff who see patients. There is a shortage of oncologists nation wide and that can have an impact on how NPs and PAs are utilized. My personal reaction to having another person in the room is very different than yours and I am probably less modest than many. I grew up with brothers plus often went swimming where the dressing rooms were not very private.So I got pretty desensitized to other women seeing me naked and my brothers wanted me to react if they peeked into the bathroom when I was there, so I learned to not give them any reaction. When I see my onc at the cancer center where I go, I usually see her alone, though occasionally a NP has sat in, and occasionally a med student, but the onc always asks if it is okay for the student to be there. I really value education and if some good can come from my cancer experience, I'm all in! (I've also always allowed student nurses to start IVs or whatever they ask if they can do for hte same reasons.) When I went to the CCC closest to where I live, right after initial staging, my appointment stretched to few hours! First a "fellow" asked me alot of medical questions. A fellow is already an MD an has done a residency, in this case in oncology and is doing more education to specialize, like in breast cancer. Then a med student came in to ask more questions and asked if she could do a breast exam. Then the bc onc came in with both the others, all women (how wonderful!) Again, I gave persmission, and the onc reviewed every thing, did a breast exam unlike any I've ever had, as though she had x-rays in her finger tips. Then the three of them went out to discuss all they'd learned and then the onc came back in to tell me her opinions, including that I had years, not months, and that when an aromatase inhibitor works, it usually works for a long time. My husband and grown daughter were there with me and we were all able to ask questions. I really trust my local onc and had not felt a need for a second opinion, but I was and am glad that I accepted her suggestion that I do that. I went to the same CCC about six months ago for my second second opinion, with a different onc. Things have changed alot in the 15 years between those two appts! New building, better parking, less wait time once there, but the same very satisfying time with the bc onc. No other docs or med students, but plenty of time for our questions and similar reassurance that I have years left. I have made arrangements for my body to be donated to the medical school there when I die. It will be cremated when they are done with it, and the ashes sent to my family. I am really grateful for the work they do there and even though their university football team is the primary rival of the team of the university where I got my BA and MA degrees, I want to give back for what they have done for cancer patients. This is longer than I meant it to be......I tend to go off on somewhat related tangents. i will shut up now!

[Hidden in reply to PJBinMI]

Well, my onco is a woman and I am treated at a Cancer Center that has an excellent reputation. I do NOT get undressed at my onco appts. so it is nothing about modesty. Modesty went out of the windows after two months of having to pull my pants down to get my butt shots. My onco said something the first time she came and in and I was not feeling well and said I don't care, that is fine. I thought it would be a one or two visit thing. But she does not wear any kind of resident coat or even a name plate with Maimonides on it as do all the other employees. I have emailed my onco that I would prefer that my next appt. (which is today) that I would prefer it to be private but I doubt she read my email. She rarely does. She never speaks and my onco never addresses her when I am in there. So I thought it would be over by now. If she is at my appt. again today, before we even start, I am going to ask the reason why as I forgot and if its a long-term thing, I am going to say I would prefer for it to be private. I have questions and some other things that I want to say to my onco but feel confined by this lady's presence. I am going to ask today what her purpose is there and then mention going forward, I would prefer my appts. to be private.

[Carshield]

So sorry you are subjected to this pressure. Perhaps your PCP would be willing to speak on your behalf. I would feel just as you do. You deserve privacy and respect during this

challenging time.

Bless you, my sister!

Carshield

[Hidden in reply to Carshield]

I rarely go to my primary doctor at all. Plus, I have no problem voicing my opinion which I plan to do today if that lady is there again. I am going to ask the purpose. If it is just going to be another 2-3 times, I might let it go but if they think its long-term, I am saying No, I do not want her in the office at the time of my private appt.

[viennagirl]

You could ask her why she is there and you could then tell her to leave if you don't like her answer. You have rights to privacy. Best of luck with your healing journey.

[Hidden in reply to viennagirl]

I asked yesterday (while the lady was there) and my onco said it's easier for her bc she is not a fast typist or very experienced with the computers other than the basic info she inputs in so she uses this lady to type up notes and our conversation or changes we discussed. My onco said if I had to speak with you and then also turn around and starting inputting the information, it would take much longer. So I am okay with that.