Changing Doctors for Followup: Who do I see?

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.

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.

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?

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.

@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.

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.

My symptoms are very similar to this

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!