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Changing Doctors for Followup: Who do I see?
I’m 7 years post double mastectomy bc surgery. 2020-2021 was my 5 year follow up but it was the height of covid so it threw everything off. By the time I got into see my oncologist it did not go well. She came into the door of the exam room totally geared up in double masks and face/head shield helmet and what appeared to be a hazmat suit head to foot. From the doorway she asked why I didn’t do a virtual appointment. She seemed agitated with me. I said I don’t believe you can detect cancer over a screen. She abruptly walked over and examined me. Said: people are dying from covid. I said I understand that but as an oncologist you should know they are also dying of cancer, especially left undetected too long. She didn’t respond. Said I seemed fine and see me if I had a problem. To try to avoid coming in person.
I haven’t been back to her. I attempted to get a new oncologist last year but everywhere I called they called back after reading my files and said they couldn’t see me, they weren’t taking new patients or they said not unless I had a new present condition. How would I know that I do if I can’t be seen? I feel like she put some note in my file. Anyway, I feel I do have a very recent issue. My right breast feels slightly swollen on my armpit side and yet a little loose/hollow rippling underneath. I don’t know how to describe this other than say it also feels “off” even when I touch the area or lift my arm, a little stiff or “thick” feeling compared to the left breast that just feels it’s usual.
My dilemma is, who do I see? Do I call a new oncologist, a general practitioner, OB/GYN, the cosmetic surgeon, the oncologist surgeon...? Any help would be appreciated. Thank you sorry so long.
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Really....If you are a few years out it can get harder and harder to get to an oncologist. That is very frightening.
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2 ReactionsSadly after that magic year 5, if you have been clean, then it can be difficult. Currently my husband is taking an oral chemo and about 5 support meds and cannot get in to see his oncologist even though he is having some fairly severe ankle and foot swelling, and some discoloration. They told him to see his PCP, who can see him the first week of July.
Are still taking treatments?
It is not only frightening it’s wrong. By the time I can get into to see another doctor in weeks before they can give a referral to an oncologist that might be able to see me in a couple or a few months... There’s nothing right reasonable or logical about it. The message is basically: Dint waste our time.
Ok, then change your practice to provide appointments by nurse practitioners and then a fast track to the oncologist.
There once was a time where people were treated with compassion concern and empathy. Doctors got involved. I’m lucky if any of my physicians remember me from appointment to appointment.
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3 ReactionsNot being sure about your hormonal status, age, stage of cancer, or all those other important things that would be good to know on this forum, I would say that whenever I have a question, I go back to the surgeon who performed the mastectomy. I have had stiffness from day one just about (so many lymph nodes removed). It could be something with me, of course, but I try to keep track of my general health (through blood work, organ function results, etc.). Then there's always an option of starting over (second opinion) at a cancer center. I've found my local oncologist to be pretty unhelpful in most things over time.
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1 ReactionWhy not see your Ob/Gyn or regular primary care and ask for an MRI?
Keep persisting, you should be taken care of.
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2 ReactionsSometimes we have to make ourselves priority #1 and be forceful to advocate for ourselves. If Onco not available, see PCP or ask to see NP or someone else within the practice. Some offices offer phone appointments - which might be a way to have a conversation to get an earlier appointment. Make sure to let offices know that you want to be placed on a cancellation list, if they have one. Then again it might depend on the type of insurance you have - that requires you to see PCP or NP before being referred to onco or someone else.
It's not easy and is down right frustrating sometimes when we feel as if our doctor is not hearing our urgency given the uncertainty we feel in our lives with our dx.
Hang in there and don't give up advocating for yourself. Call every couple days or every week to ask for cancellations - sometimes it is the squeaky wheel that gets the oil.
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3 ReactionsDo you have an emergency at your local hospital. If he is having food swelling with discoloartion this can be an emergency. He may be having an infection, and needs emergency care. If noting else, see if you can get a "Tele Doc" to decide how serious this problem is and if he "Can Wait".
Gina5009
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1 ReactionThank you we took him to an urgent care and the start of looking into it is happening.
Hi Chris @auntieoakley
That's very scary that your husband not only can't see an oncologist when he's still on meds, but really shocking there is such a long wait for a PCP visit. So who is managing your husband's oral chemo if not an oncologist?
The more I read about others, the luckier I feel that my surgical oncologist was still seeing me 7 years after my surgery when the cancer came back. Sometimes I feel like I have too many followups. So many different specialists for various conditions, the number of appointments can be draining.
Even though I see my oncologist regularly for the recurrent breast cancer, I still have semi-annual followups with the radiation oncologist 2.5 years after completion and annual visits with the PA at the breast surgeon oncology office 3 years post surgery. That's all just for the breast cancer. Is that because I have a PPO? Do those of you having trouble being seen have an HMO?
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1 ReactionI have a PPO and my oncologist told me she is my doc for life, but doesn't need to see me. I think the difference may be due to a double mastectomy. But I don't see any way to know if I have any spread after 8 years.
I have a lung nodule that noone is following so I am taking the initiative on that. Any bone pain that I tell my oncologist about gets referred to my PCP.
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