I Don't Know What To Think Of My Oncology Appointment-Need Opinions

Northwoodsgirl said:

Get a second opinion at Mayo
Pat, please get a second opinion at Mayo. Most insurers pay for the second opinion. There are really good gyn-oncs out there. You are the consumer and you have the right to be empowered with as much information as possible to make an informed decision. You have a million questions as we all did and somedays still do depending on where we are in our journey. Take back your power!
Lori

Scans
I have a very reputable gyno-sugeon-oncologist and he primarily follows CA125 (if it is a good marker for the patient-which in my case it is) as well as exams, and symptoms.

He will do a scan if CA125 goes up. He is not a big believe in scans because he does not believe in exposing his patients to extra radiation if not needed.

Cindy

Communicating with our Oncologists

Dear Pat,

While competence is the chief trait we seek in an oncologist, we also need someone we can communicate with; we may be under treatment for several years so need to feel that, while respecting doctors' time, we can also raise important questions.

Am grappling with this problem to such an extent that am considering changing instiutions for my own treatment.
Under care at a prestigious urban cancer center since September, I don't doubt the competence of my team. My radiological oncologist is lovely, even giving me her email address. But my surgeon/oncologist, in five months of care, has yet to sit down with me for even a half-hour face to face consultation. Appointments occur right before chemo; a one-minute pelvic exam is followed by 'Do you have any questions?" as she paces about the room, giving the impression that she is merely in a hurry. Just three times since September have I asked her secretary to forward her an email about an important question. She never answers but just forward my questions to the chemo nurse, who phones with adequate, or inadequate, responses.

I now realize that I have sought several opinions on my treatment less from the need for more OPINIONS, per se than the EXPLANATIONS I receive from other oncs on the pro's and con's of varying treatment options.

Two oncologists at nearby institutions who gave me second opinions spent 40 minutes with me in a sitdown consultation--more time, ironically, than I've ever received from her.

Is it unreasonable to hope for a treatment style that considers me something of a participant, rather than passive complier, in treatment decisions? The chemo nurse (who has to field so many questions!) recently sighed that she wished I wouldn't do so much of my own research ("it just makes you nervous") and that I would "just trust that we want the best for you." I find this incredibly condescending. I have not expressed even tacit criticism of anyone treating me, but would she want her OWN daughter, diagnosed with a serious disease, not to do any of her own research or raise vital questions? (No I am not a physician, but were it not for my own online research, by the way, my own tumor would have been diagnosed a year earlier than it was!) We women need to be highly proactive, in my opinion, to be sure we are being treated with CARE.

It's easy to get to my highly rated treatment center and I like and trust my radiological oncologist, so hate to change course in midstream. But am feeling frustrated. Am I being too critical, expecting too much? Have any had similar experiences?

Thanks for any input,

Rosey R

RoseyR said:

Communicating with our Oncologists

Dear Pat,

While competence is the chief trait we seek in an oncologist, we also need someone we can communicate with; we may be under treatment for several years so need to feel that, while respecting doctors' time, we can also raise important questions.

Am grappling with this problem to such an extent that am considering changing instiutions for my own treatment.
Under care at a prestigious urban cancer center since September, I don't doubt the competence of my team. My radiological oncologist is lovely, even giving me her email address. But my surgeon/oncologist, in five months of care, has yet to sit down with me for even a half-hour face to face consultation. Appointments occur right before chemo; a one-minute pelvic exam is followed by 'Do you have any questions?" as she paces about the room, giving the impression that she is merely in a hurry. Just three times since September have I asked her secretary to forward her an email about an important question. She never answers but just forward my questions to the chemo nurse, who phones with adequate, or inadequate, responses.

I now realize that I have sought several opinions on my treatment less from the need for more OPINIONS, per se than the EXPLANATIONS I receive from other oncs on the pro's and con's of varying treatment options.

Two oncologists at nearby institutions who gave me second opinions spent 40 minutes with me in a sitdown consultation--more time, ironically, than I've ever received from her.

Is it unreasonable to hope for a treatment style that considers me something of a participant, rather than passive complier, in treatment decisions? The chemo nurse (who has to field so many questions!) recently sighed that she wished I wouldn't do so much of my own research ("it just makes you nervous") and that I would "just trust that we want the best for you." I find this incredibly condescending. I have not expressed even tacit criticism of anyone treating me, but would she want her OWN daughter, diagnosed with a serious disease, not to do any of her own research or raise vital questions? (No I am not a physician, but were it not for my own online research, by the way, my own tumor would have been diagnosed a year earlier than it was!) We women need to be highly proactive, in my opinion, to be sure we are being treated with CARE.

It's easy to get to my highly rated treatment center and I like and trust my radiological oncologist, so hate to change course in midstream. But am feeling frustrated. Am I being too critical, expecting too much? Have any had similar experiences?

Thanks for any input,

Rosey R

Doctor Patient relationships
As a patient and also as a psychologist who has worked in oncology for many years - it is very disturbing to hear about your experience with your doctor - and nurse (usually the nurses are somewhat better )
There is so much research that indicates that the better the communication and relationship between a doctor and patient, the better the "outcomes" - not necessarily in terms of disease, but in terms of satisfaction and adherence to treatment as well as general quality of life. Being a partner with your medical team is so important - not that you need to or can ever know what they know medically - but that you are included in decision making, educated about your situation and generally feel that you are part of the team - since you are! Med schools are trying to train docs in communication and patient relationships but it has not made nearly enough of a dent - and of course there will always be doctors who are not interested in their relationship with their patient or the psychosocial issues a patient has concerns about.
If it is at all possible, I wonder if you could have a frank discussion with your team - sharing that you feel a bit condescended to, that you do best with information and understanding your disease and the treatments, and that it is very important to you that you be a part of the conversation - You can ask, if you want to do your own research, what does he suggest (always go to sites that end in edu, org or gov (although not all the org - non-profit sites are realiable.) - that way indicating that you respect him and would appreciate his guidance in this.
You need to navigate this in the way that works for YOU - and it is okay to ask questions and also expect to be treated with respect - And if there are other gyn/onc where you live, you can also consider a change of doctor if the relationship is not working for you and only making you more anxious or feel badly about yourself - that is the last thing you need - but if you do not have other options, it is worth a try to speak up - too often we don't say anything and without feedback, doctors can't know the impact of what they say - good luck with this