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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.

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Zebra | @californiazebra | May 24, 2023
In reply to @littlebit71 "It only happens the first time I try to reply to a new person. Now this..." + (show)
@littlebit71

It only happens the first time I try to reply to a new person. Now this time you replied to me so it says reply. On a new post I doesn’t give me an option to reply. Only comment and no reply at the bottom. It’s still says comment to send.

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@littlebit71 -- yes, I have also noticed when replying to the initial post, there is no reply option, just comment. Just use their screen name in your reply to get their attention.

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frogjumper | @frogjumper | May 24, 2023

My regular family physician always ordered my mammograms before I had cancer. I would imagine your family physician could examine you and order the diagnostic mammogram. Also some hospitals have "high risk breast clinics" that read the mammograms as soon as you get one versus waiting and can do ultrasounds etc if needed on the same day.

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1 reply
windyshores | @windyshores | May 24, 2023
In reply to @allusernamestaken "Thank you I had double mastectomy, both breasts removed and another surgery afterwards because cancer was..." + (show)
@allusernamestaken

Thank you I had double mastectomy, both breasts removed and another surgery afterwards because cancer was still found on chest wall. After I was in the clear they told me I would alternate seeing each doctor (oncologist, cosmetic surgeon, and surgical oncologist) the first 2 years following surgery then once a year up till year 5. That the greatest odds of recurring cancer is within first 5 years. This development is year 7 and it’s in the same general area of the initial cancer, right breast/chest near armpit.

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@allusernamestaken (love your user name) I have read that if triple negative cancers make it to 5 years, they face less risk of recurrence, but for hormonal cancers, the risk continues to rise. My two genomic tests at the 5 year point bore that out as did the graph on my original Oncotype. But if your risk was low, it probably continues to be low, relatively.

I also had a double mastectomy. Since we don't have breasts, we are not having the MRI's my friends with one mastectomy are having. Noone is checking our chest wall anymore, or our lymph nodes.

I don't like to bother folks with stage 4 but have occasionally asked how it was detected (usually bone, not always) and the answer always seems to be that they were having imaging for something else entirely.

It's easy to feel abandoned with our continuing fears. I hope one of your docs can provide reassurance.

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1 reply
allusernamestaken | @allusernamestaken | May 24, 2023
In reply to @auntieoakley "Because you are a few years out it gets harder and harder to get in to..." + (show)
@auntieoakley

Because you are a few years out it gets harder and harder to get in to an oncologist. That being said, a surgeon friend said most breast cancer referrals come by way of OB/GYN so if it were me, I would start there.
This also gives you the option of asking for a different oncologist, should you need one.
Do you live near a cancer center or teaching university where there might be multiple onco doctors to choose from?

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Thank you that’s what I was thinking today, that I should probably call the GYN doctor and make an appointment. Having no luck with oncologists. I live in a far rural area so everything is a drive. But I think I’ll ask recommendations and referrals from the OB/GYN doctor.

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allusernamestaken | @allusernamestaken | May 24, 2023
In reply to @californiazebra "Hi @allusernamestaken I was 7 years post double mastectomy when my breast cancer came back in..." + (show)
@californiazebra

Hi @allusernamestaken
I was 7 years post double mastectomy when my breast cancer came back in my chest and pectoral muscle so that 5 year cancer free rule may be typical, but is not absolute. I could feel the lump on my chest, no other new symptoms. My aunt's BC came back after 13 years.

When reading posts of others, I guess I was lucky that my breast oncology surgeon was still following me annually even after 5 years. It was every 6 months the first 5 years. I also received annual ultrasounds. I was treated at a breast center so maybe that makes a difference. I will now be treated and followed the rest of my days.

I agree with others here that if you're not currently receiving regular followup visits with the oncologist or surgical oncologist then it's better to just start over with your OB/GYN or PCP so they can refer you to a breast specialist or for imaging.

I always liked having ultrasounds because I could show the tech my area of concern and they could really focus on that and tell me if they thought it was just bone, scarring, sensitive nerves or whatever. At the breast center, the radiologist then came in after that ultrasound tech was finished, reviewed the findings and usually did a little more scouting. All were so friendly and ready to answer questions. If your care team feels hostile, time for a new team.

I will say prior to the 7 year mark, most of my tenderness, tightness and possible lump concerns turned out to be nothing unusual. I still get tightness and swelling in and around the armpit on the cancer side from lymphedema and cording (like little knots) that has to be worked out. My right side never feels the same as my left side. It usually flares up with overuse like heavy housecleaning. You're wise to get it checked out as a precaution and for peace of mind. Blessings to you.

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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!

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2 replies
allusernamestaken | @allusernamestaken | May 24, 2023
In reply to @windyshores "@allusernamestaken (love your user name) I have read that if triple negative cancers make it to..." + (show)
@windyshores

@allusernamestaken (love your user name) I have read that if triple negative cancers make it to 5 years, they face less risk of recurrence, but for hormonal cancers, the risk continues to rise. My two genomic tests at the 5 year point bore that out as did the graph on my original Oncotype. But if your risk was low, it probably continues to be low, relatively.

I also had a double mastectomy. Since we don't have breasts, we are not having the MRI's my friends with one mastectomy are having. Noone is checking our chest wall anymore, or our lymph nodes.

I don't like to bother folks with stage 4 but have occasionally asked how it was detected (usually bone, not always) and the answer always seems to be that they were having imaging for something else entirely.

It's easy to feel abandoned with our continuing fears. I hope one of your docs can provide reassurance.

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Thank you @windyshores I also love your screen name! 🥰 So many variables with cancer. I learn so much every time I ask questions. Thank you for your words.

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allusernamestaken | @allusernamestaken | May 24, 2023
In reply to @frogjumper "My regular family physician always ordered my mammograms before I had cancer. I would imagine your..." + (show)
@frogjumper

My regular family physician always ordered my mammograms before I had cancer. I would imagine your family physician could examine you and order the diagnostic mammogram. Also some hospitals have "high risk breast clinics" that read the mammograms as soon as you get one versus waiting and can do ultrasounds etc if needed on the same day.

Jump to this post

@frogjumper thank you I had a double mastectomy so no mammograms for me anymore. My pc doc retired 8 months ago and I have yet to replace her but need to. I think I’ll start with an appointment at the OB/GYN.

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tctredwell1 | @tctredwell1 | May 25, 2023
In reply to @allusernamestaken "My symptoms are very similar to this" + (show)
@allusernamestaken

My symptoms are very similar to this

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Hi. I agree with zebra, auntieoakley and windyshores. The best way to really know is to make an appointment with your gyn or pcp and get the referral for a mammogram and/or ultrasound just to be sure. Let us know how you make out. 👍

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janetamyshapiro1956 | @janetamyshapiro1956 | May 25, 2023

Maybe extreme but I would go to a major cancer center like MD Anderson. I think you can send them all your records in advance. Dont wait. Only use a breast oncologist. Good luck xox

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windyshores | @windyshores | May 25, 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

The highest risk is not in the first 5 years for hormonal cancers. The risk continues to rise after 5 years. For that reason, I don't understand why we are not followed but I believe it is because there is no definite way to determine spread , for those of us with no breasts, until symptomatic or imaging for something else brings it out. We apparently see oncology for the years we are on meds, only. Maybe other practices are different.

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