1. < Breast Cancer

Changing Doctors for Followup: Who do I see?

Posted by allusernamestaken @allusernamestaken, May 24, 2023

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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

jaynep | @jaynep | May 29, 2023

First of all, I’m so sorry you’ve had to go through this experience❤️. Do you live near/driving distance to a large cancer center or teaching hospital? Do you have a primary care provider or ob-gyn? I’d try that first. My insurance will pay for a mammogram without a referral. Will yours cover it? Perhaps start there?

REPLY
gina5009 | @gina5009 | May 29, 2023

Hurray, Hurray, Mark one up for out side. Congratulations
Gina5009

REPLY
Mentor
Chris, Volunteer Mentor | @auntieoakley | May 29, 2023
In reply to @californiazebra "Hi Chris @auntieoakley That's very scary that your husband not only can't see an oncologist when..." + (show)
@californiazebra

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?

Jump to this post

He is under the care of an oncologist, he is seen about every 7 weeks right now. My concern over the swelling is because he is on so many medications with the oral chemo drugs, and they always ask about ankle swelling because this cancer and the drugs affect kidneys. When his ankles started swelling so much, I really thought they would want to see him. I was wrong. I was saddened and disheartened. This will fundamentally change the way I feel about the doctor who has been treating him for 13 years.

REPLY
Zebra | @californiazebra | May 29, 2023

@auntieoakley
That is pretty disappointing and concerning that they won’t see him right away.

I know my oncologist’s response to every side effect I mention is “go see specialist x.” It seems to me if they are common side effects to meds he is prescribing that he would be more educated or responsive about them.

Prayers for your husband that all will be okay.

REPLY
1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | May 29, 2023
In reply to @californiazebra "@auntieoakley That is pretty disappointing and concerning that they won’t see him right away. I know..." + (show)
@californiazebra

@auntieoakley
That is pretty disappointing and concerning that they won’t see him right away.

I know my oncologist’s response to every side effect I mention is “go see specialist x.” It seems to me if they are common side effects to meds he is prescribing that he would be more educated or responsive about them.

Prayers for your husband that all will be okay.

Jump to this post

He will be. Urgent care started treatment with a medication and compression socks. He will be seeing a specialist on wed. So they can make sure his kidneys aren’t failing from the chemo.
In the past that has always been our oncologist reaction as well.
Thank you for prayers❣️

REPLY
heydon2023 | @heydon2023 | May 29, 2023

Good Lord. Reading that gave me a headache! You poor girl! Thankfully we no longer have that same Covid situation right now. My advice would be to go to your local GP and ask him or her to give you a full checkup and to give you a Referral to a good surgeon if it's warranted. You should NOT do nothing, as your body is telling you there is something wrong. It may be nothing to worry about, possibly something simple, but please do not wait! And if you're not satisfied with your GP; you can change to another doctor. Another idea while you're waiting for an appointment is to visit your local hospitals Emergency Room or an Urgent Care. They will take a look at it for you. Because in your case it may very well be an Emergency or Urgent. You just do not know! Blessings to you and I know it's hard but try not to worry too much in the meantime.

REPLY
Zebra | @californiazebra | May 29, 2023
In reply to @windyshores "I have a PPO and my oncologist told me she is my doc for life, but..." + (show)
@windyshores

I 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.

Jump to this post

@windyshores

I wonder if my oncology team kept seeing me after 5 years because I have the BRCA2 and CHEK2 mutations? I wish you were all still getting annual ultrasounds. Such an easy and harmless, but valuable test. I wonder what the cash discount price would be for you?

When I complained of bone pain, joint pain, I thought my oncologist might order a bone scan that I haven't had for 3 years. Instead, he just told me it was the letrozole doing that. I asked why they don't do periodic bone scans like my CT of chest, abdomen and pelvis. He said because breast metastasis to bones usually occurs in the pelvis, but then I read that 10% of the time bone metastasis is in the long bones (arms and legs). ??? I understand that scans are costly and have a lot of radiation. I don't know about you, but I get a sense of relief that lasts for quite some time after I have a clear scan or one that shows no progression. If bone pain gets worse, I'll push. Right now pain is very sporadic.

How long have you had the lung nodule? How big?

That's another complex issue for me. Since I have over 50 lung tumors from Lung NETS/DIPNECH, I wonder if my breast cancer spread to my lungs, would anyone even notice a new tumor? Would it look different than the NETS tumors? This is when AI might come in handy for detecting something new and different.

REPLY
lisakinpa | @lisakinpa | May 30, 2023

I’m so sorry to hear of your situation.

If you’re now experiencing some concern, I would reach out to your breast surgeon.

My surgeon has indicated that her door is always open for any questions or concerns. ♥️

REPLY
Zebra | @californiazebra | Jul 14, 2023
In reply to @allusernamestaken "This was very helpful, thank you. I agree with all you said. I know they say..." + (show)
@allusernamestaken

This was very helpful, thank you. I agree with all you said. I know they say the highest odds are within the 5 year marker then slowly decrease but I do know several people that were outside of those highest percentages. I’m hoping what I’m experiencing is only scar tissue and over use of the arm. But it’s nagging at me to get verification. I’d rather ignore it but I’m a mom, I can’t afford to error on the side of comfort :/ I wish for us all that we never had to experience this or the possibility of its return. I’m more emotional about this than I was the initial cancer. I was very pragmatic at the time. But lack of experience can often be needed boldness and optimism.
Best to you!

Jump to this post

Hi @allusernamestaken

Have your doctor's identified the issue? Update?

REPLY
View MoreView Less
Please sign in or register to post a reply.