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What after care/tests/scans is your oncologist doing? I had ibc in one breast with one node having micro amounts. Onco score of 5, intermediate grade and 48 yrs old. My onco says no testing outside mammos unless sypmtoms present of recurrence or mets. Seems it is far too late at that point? Thoughts?

August 5, 2017
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A MyBCTeam Member

Some oncos test but I'd venture to say most do not. Mine doesn't (IIIA occult IDC er/pr+ her2-).
There's absolutely consensus on the fact that women are alarmed that there is no recommendation for scans or bloodwork (outside of late stage to monitor progress), but differing opinions regarding monitoring a "disease free" state.
What I CAN say, is only my opinion, how I've reconciled not having investigatory scans or labs following 'successful'treatment:
Success is determined when one is producwd NED (no evidence detected), in other words, labs or scans, within their limitations, are unable to perceive disease below a certain level. If disease persists, a recurrence is inevitable, and in this NED state, could not be detected...until it's of size to in fact perceived by scan or quantify by lab. So, one is, in fact, in the same state before and after this threshold of perception, and treatment for a relapse would be the same regardless.

As a woman whose cancer involved vascular and lymphatic invasion, I know that cancerous cells were already on the entrance ramp of the highway to my entire body. I had to trust that chemo would shut down the whole show, but I also logically know any cell that might have survived would be there, would continue to be there, and would eventually be perceptible by scan. If it's so that I'm ancer would recur, treating today would be the same as treating later on at perception.

Now, having said that, I've gone to my surgeon three times in as many years with complaint of a lump or bump that worries me, and she's always been able to rule out a recurrence with a scan. And I'm here to tell you I was on pins and needles the first two times, but now, it's easier. I'll assume it's nothing (but of course I want proof) unless it's something. Ask your doc if she would be willing to perform ultrasound should you find anything questionable and I bet she's say "yes, any time". It's a reasonable approach to monitoring, in my opinion.

I hope this helped, and I hope it's length didn't muddy the waters for you. Yours is a legitimate and oft-asked question, and I wish doctors were better at explaining the logic than they are, so that so many of us aren't left feeling vunerable because of this protocol.

((Hug))

August 5, 2017
A MyBCTeam Member

Stage 1, Grade 1, IDC/DCIS, HR+, HER2-, node negative, left breast. Oncotype DX 11. BMX with DTI and 5 yrs tamoxifen. I go in every 3 months for the first year for follow ups and the touchy feelys. Then 6 months for another year than annual until my 5 yrs. I have blood work done for other issues, but most likely he would always do that, otherwise, no additional testing or scans unless I complain of something consistently so that he considers it a concern. ie I always have pain in this one spot. He said if he hears that more than twice from me, he considers that to need a "Scan" ( I assume he means MRI)

August 14, 2017
A MyBCTeam Member

@A MyBCTeam Member, this: http://www.mayoclinic.org/diseases-conditions/r...

We all need to become very familiar with our new topography post-tx. As I said, I've initiated several checks over the years for things I find abnormal. And I have had no compunction at all about initiating these assessments. I don't feel like a dork each time they turn out normal, as each new benign situation incorporates into that knowledge of my new topography, and that's definetly an asset.

((Hug))

August 9, 2017
A MyBCTeam Member

And exactly what type of symptoms are they talking about? A lot of people on this side had no overt symptoms in the first place. I just posed a question on this site a few minutes ago about how long does it take for one's blood test results to normalize after active treatment. I think oncs need to be more specific.

August 8, 2017
A MyBCTeam Member

Very useful thank you for writing out. And I agree with you that most oncologists/surgeons would perform tests if you asked them.

August 6, 2017

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