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allusernamestaken (@allusernamestaken)

Changing Doctors for Followup: Who do I see?

Breast Cancer | Last Active: Jul 14 1:59am | Replies (39)

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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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Replies to "Hi @allusernamestaken I was 7 years post double mastectomy when my breast cancer came back in..."

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!