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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I don't have much follow up at 5 years and later, after doing 5 years of letrozole. My oncologist refers me back to PCP for x-rays if I have a concern about bone pain. If you are concerned about the other breast, first step would be to request a mammogram and breast exam by your PCP. I think oncologists are pretty inundated right now and after 5 years it seems we aren't really active patients. There is no way to know if cancer has recurred or spread other than imaging, to my knowldege,. Some docs do blood markers but most do those after stage 4 diagnosis I believe.
I had a MRI and it showed my breast cancer moved to my lungs. No cancer anywhere else or my lymph nodes. But when cancer moves, it’s called stage 4. I never knew that.
They did blood markers on me.
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.
My symptoms are very similar to this
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?
Thank you for the information. My lungs were hurting when I breathe and still does a little, but I thought I had Covid. Thank God I didn’t. I still thank God for all my ups and downs. I’m fine with my health regardless because I left it in God’s hands. I’m a happier person now.
I don’t know why but every time I try to reply on some people’s posts it only lets me do comment and end in comment, no reply. Am I doing something wrong?
I just click on reply, type in my message in the comment box that comes up and then click reply at the bottom right corner of that box. It always posts as the last message in the thread not after the comment I'm replying to. That's why I also write the screen name of the person I'm replying to at the beginning of each message. That way I'm sure the right person is notified. Also, when I read responses from others, sometimes it doesn't say which comment they are replying to and that can get confusing.
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.
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.