crazy follow up care

NevadaPaula · April 2011

I just had my first 3 month follow up visit with my chemo oncolg. I have 3 more Herceptin treatments left, and am on Anastrozole, since October.

She does not do blood tests, pet scans, tumor markers,ect. as part of the exam. I did not have a breast exam either.

My tumor was T1C with no nodes; sn was not found, so they did the alnb, 20 with no nodes positive. I did have TCH, chemo and the Anastrozole.

I had no symptoms of BC, the tumor was small when it was found, it could not be felt on a breast exam.

My first mamogram after treatment was done, it was normal.

What is the point of going back every 3 months? I could not tell that I had BC, when it was there.The onclolgist doesn't order any tests as a follow-up. So my point is: how do I know if the cancer is back, except to see it on a mamogram? It makes no sense to me. Why do I need to go back, if nothing is done?

Please help me with this, I might be missing something, but it seems very pointless.

.

ck55 · April 2011

You know NevadaPaula, I kind of have the same question.

From everything I have read on these boards, most oncs don't do routine scans because there is no huge benefit from finding mets earlier rather than later. So what is the point of going in every, well for me every 6 months, having blood drawn to check tumor markers that apparently aren't all that reliable anyway? Fortunately I like my onc so I don't mind seeing her that often, but like I said, what really is the point? But perhaps in this case, ignorance really is bliss?

Just a thought.

Cyndi

NevadaPaula · April 2011

Thank you CK55. That is what I am leaning towards also. By the way, I have never had a blood test to check the tumor markers, my onc. doesn't believe in them. That is why I get worried when I think about it.

By golly, what do they look for, when they don't look for anything?

nowords · April 2011

I have two oncologists. One is from the Mayo Clinic in MN who I have seen since the start ( 2 hours away); another one is closer to home who I mostly see for mammo referrals. They differ in the way they do things.

The Dr. @ Mayo has told me from the get go that finding mets earlier rather than later does not change the prognosis. I see her every 6 months; she does a physical exam and she does do blood work. She only suggests annual mammogram on remaining breast and annual PAP no ultrasounds for tamox use..., the other Dr. had me get an MRI as well.

Some days I think I would rather not know until I actually feel symptoms...and some days I wonder if knowing that there are mets would make me alter decisions now....especially financial ones....and recon surgery....

I know Mayo Dr's. get paid a salary. Same $$$ regardless of the tests ordered...not sure about the other place. If they get paid by the visit and a % of tests run? No clue really, but the other clinic that is not the Mayo does order more tests...some I do, some I defer to Mayo for second opinion...

kaitsmom · April 2011

Something I don't understand . . . how can it not matter in terms of prognosis whether mets are found sooner rather than later. It seems to me that IF there were mets, then the sooner you were started on a course of whatever treatment they were going to use, the sooner they could slow down the progression, perhaps adding more quality time. Yet, over and over I read that it doesn't matter when they are found . . . Can someone help me understand this better?

PS My onc doesn't do tumor markers either . . .

susan_02143 · April 2011

My oncologist feels very strongly that finding mets earlier absolutely changes the equation. No, it doesn't change the prognosis. Stage IV leads to death, regardless of how you get there. But, early treatment extends your life. By catching my mets when they were minimal, I am receiving treatments that, for now, have prevented the spread of my mets to bone and organs.

My follow up appointments, before the mets were found, included a robust physical exam, a full blood panel including tumor markers, a long discussion about how I was feeling, and a chance to talk about the latest research studies.

The blood markers were the alert that something was happening in my body, and follow up scans confirmed my oncologist's suspicions.

Just another viewpoint.

*susan*

lrr4993 · April 2011

I have been told the same thing - scans don't improve survival for mets. For me, the only positive to finding mets early is that I would promptly quit working and enjoy the rest of my life. I would hate to find them so late that I have no time to enjoy things and prepare for the bad.

As for a doctor's appointment every three months, I get a manual breast exam, which gives me a little piece of mind. Also, she checks blood, which, although not reliable, is at least something in the way of monitoring. I am sure they are also looking for other symptoms that we may not recognize on our own, plus and delayed problems from treatment.

I like being closely watched. It just makes me feel better.

NevadaPaula · April 2011

Thank you kaitsmom. I am glad that I am not the only one confused about the quality and the lack of depth in the follow-up exams. From what I have experienced, it is a waste of time if one is symptom free.

OnePetie · April 2011

MD Anderson is my treatment center. After my surgery, I saw my oncologist every 3 months for a year... now every 4 months... about to jump to every 6 months until I hit the 5 yr mark. I have a good physical exam and labs at each visit.... it's a chem panel and the primary objective is to check my liver function values. No tumor markers or scans. Once a year, I have a mammogram on the well behaved breast and bone density scan. That's it!

crazy follow up care

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