gatekeeper nurse
I had a single mastectomy in August. Since then I've had a couple of followup visits with my breast surgeon and have been seeing the plastic surgeon who will do reconstruction. The plastic surgeon is an independent one-doctor office. He has staff for appointments, etc. but he answers emails himself. And in a very timely manner, which is rare and wonderful.
My breast surgeon is a very busy woman (dept head) in a large medical group. She does not answer emails. If there is something really urgent she will call me. My issue is when I have a question for my doctor, I will invariably get an answer (on the portal) from her nurse. Most of the time she won't say Dr W says this or that. She will just answer the question. So I don't know if she is making a decision or she has asked the doctor.
I find this frustrating. The latest is I sent a message to the doctor saying I haven't had a mammogram or ultrasound or breast exam since May. Since I'm not scheduled to see the surgeon until January, should I be scheduling a breast exam with the NP who followed me before the surgery? or a mammogram or ultrasound? The nurse answered me saying I should wait until after I see the surgeon in January. Would you assume she has asked the doctor? I admit this woman isn't my favorite staff member anyway.
I guess if there is anything going on in my surviving breast two months isn't that long to wait.
So I can just accept this advice. Or I thought about sending another message politely asking if this is the doctor's decision and saying something to the effect "I'm sure you understand this is my second breast cancer and I want to make sure I'm getting the best care"
any advice? I don't know any way to get around the nurse. I understand the doctor is busy and doesn't want to answer every email herself but…sometimes you want the doctor's decision, not the nurse's
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Most times the nurses do consult with docs and then do the follow up a lot so they can see other patients in the office while the nurse is answering emails for them from their notes. With holidays coming up as well you know they will all be taking time off as well and days off for holidays. If you need to find a specific question just ask one and ask if Doctor thinks whatever you want to know and then you will know no matter who answers you.
/i know with my MO get stuff from nurses a lot. Also with some of my other docs /i have.
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@mary9999 — Your concerns are valid, and we understand your frustration and doubt regarding the source of the answers to your questions, especially since these answers are not coming directly from your breast surgeon. We recommend following up and asking politely whether these responses are indeed coming directly from the doctor herself, and cite your breast cancer history.
Do you have a tissue expander in place? If so, that would be a likely reason why a breast exam hasn't been ordered for the mastectomy breast. If you're concerned about imaging for the surviving breast, are you able to reach out to your oncologist, or OB/GYN, or PCP, for those imaging referrals?
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no tissue expander in place.
I'm only being asked to wait until January so not that long but I'd feel better if I knew this was the doctor's advice. The response clearly comes from the nurse. Admittedly I have a bit of an issue with her from the time she said to me "I'm her ONLY nurse" - apparently needing me to know that the MA's are not nurses but she is.
Maybe I'll send her a polite message monday asking if this decision comes from the doctor.
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thank you
I guess maybe it's not that big of an issue waiting two months but I may message the nurse and just ask her if this was the doctor's decision
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I sent a message to the nurse on the portal asking if the decision was the surgeon's and saying I was sure she understood that after having breast cancer twice I was concerned about my care.
I got a message quoting the doctor but from the nurse saying doctor doesn't need to see me again, cancelling my January appointment. my future care is with the breast care provider and next mammogram not until May - a year after my last one according to my records. I have sent a message to the breast care provider asking when she wants to see me. I'm finding it odd and upsetting that suddenly the doctor doesn't need to see me. However she had turned my checking of the healing over to the plastic surgeon so I guess I will just deal with the breast care provider. the oncologist also wants to see me twice a year.
The whole thing seems off to me but I guess the Nurse wouldn't risk her job by misquoting the surgeon.
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I would look to your oncologist for any cancer related questions including when to get your mammograms. The surgeon is just there for the surgery. I know it can be hard to transition after relying on one doctor and getting through your mastectomy..
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I've left a message for the oncologist's nurse. I'll ask her advice. I have an NP who will be following me for breast care (exams, mammograms, ultrasounds). I had also asked the surgeon about PT as I'm experiencing stiffness. I was told by the surgeon's nurse that I'd need to see the surgeon first before getting a referral. Then she told me I was welcome to try asking my PC doctor. I did that and my doctor gave me a referral. but the PT facility wanted to know what kind of therapy my doctor wanted me to have. since the doctor had done the referral at my request, she didn't have a certain therapy in mind. the person at PT said it could be exercise or massage and that if it was massage it would be by a man.
So - I will talk to the oncologist's nurse. seems possible either the oncologist, the plastic surgeon who has been checking me or the breast care NP could refer me to PT (if appropriate). The reason I'm starting with the oncologist is the plastic surgeon just keeps saying I'm healing and it will take time. Not that I think PT would be enjoyable but I don't want to just accept that I may be stiff for years, or permanently.
I get what you're saying about the surgeon being for surgery but I still think it's odd that after asking a couple of questions she decided she doesn't need to see me anymore. Maybe I'm being perceived as "difficult"
thanks for your advice
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update - I called and talked to the oncologist's nurse. she listened to me and went on the portal and looked at all the conversations. she felt that the surgeon would be the appropriate one to look at my problem and decide whether PT would be a good idea. she sent a message on the portal to the surgeon and the nurse. suddenly I have an appointment for next week. they didn't say anything, just sent the appointment notice. I thanked the nurse who helped me and asked her if she got any message from them. she said she got an apology for the inconvenience. no apology to the patient. Hopefully the visit will go well and I won't need to see that doctor again.
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I totally get why you’re frustrated think anyone in your situation would feel the same. When it comes to cancer, especially a second diagnosis, you just want to know that the actual doctor is the one making the call, not someone guessing on her behalf.That said, in a lot of large medical groups the nurses do act as a filter, but most of them do check with the doctor before giving any recommendation. They just don’t always phrase it as “Dr. W says…” which makes things feel unclear.
If waiting until January feels nerve-wracking, I don’t think it’s unreasonable at all to send a gentle follow-up asking whether the doctor personally reviewed the question. Something like, “This is my second breast cancer, so I just want to be sure this advice came directly from Dr. W.” That’s not rude it’s advocating for yourself.But honestly, two months isn’t usually a big risk window, especially after a mastectomy. If something urgent was suspected, they wouldn’t tell you to wait.So if it helps your peace of mind, ask for clarification you absolutely have the right to. But you’re not being dismissed, even if the communication style isn’t ideal.
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thank you….as per my more recent post above, I talked to the oncologist's nurse who reached out to the surgeon and her nurse and suddenly I got an appointment with the surgeon for this coming week. I hope it will be a good experience and helpful. the doctor has mostly been pleasant with me but she can be a bit impatient at times. I want her input on my healing and whether I could benefit from PT and also and reconstruction (though I know I have to decide on that)
thanks for your response
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I saw the breast surgeon yesterday. She said the stiffness on the surgery site could not be improved with PT, that it may or may not improve in time. She pretty much concurred with my decision to decline hormone blockers. said they have to suggest them. she said I did well with my surgery so it would be fine for me to have reconstruction if I want it. she said while it would be easier than mastectomy it would not be easy in her opinion. My care going forward for breast health will be back to the NP and the oncologist, both twice a year. Hopefully this was the last visit with the surgeon.
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