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What kinds of follow-up appts?

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Posted 7/4/2006 3:56 PM (GMT 0)
Hi all, question on follow-up appts... I just had my 6-month follow up... (I am 5.5 yrs out from dx).. they took bl00d ... I saw my onc (whom I love!) and we talked for a bit ( I had no problems to report) and she listened to my breathing, checked my scars and that was it.  I went home and a few days later realized I hadn't gotten my little card in the mail with my CA 27.29 numbers on it.  So I waited a few more days, and finally called... of course I have to talk to the onc's PA who is a bit gruff with me because of my history (hey I can't help it, I ask alot of questions!) and she knows I don't care for her.  ANYWAY she says she'll check into it, calls me back and tells me that my onc didnt order the CA27.29 because "she doesn't run tumor markers for every visit".  WHAT?!  what the heck am I there for then?  ok, no scans, I got over that one a couple years ago.... even though I would want a CT now and then, but they don't work that way (and many oncs dont)... but NO CA.27.29??!?!  I was floored.  Do you all get that done every 6 months?? I feel like I should call back and reschedule an appt to see the onc again, but I don't want to appear like the whiny patient..... suggestions? other experiences?

thanks, HUGS - and Happy 4th!  STefanie

PS- I just HAVE TO SAY THIS --- WHEN are they gonna remove the lady over on the right side of the screen staring at us with her hands stretched out with the migrane medicine TOPAMAX???? She gives me the CREEPS and she's been staring for MONTHS!!!!!!!!!!!! 

 :-P

Posted 7/4/2006 9:58 PM (GMT 0)
Wish I could relate to your problem! My sister, 7 years out, still has these CA 27-29. I have never had ONE, not even ONE. (2 cm tumor, 5 positive nodes, AC, TAXOL, 35 rads). Old onc did not believe in them and new onc did not get one on the first visit, and he said he did believe in them. I am 18 months post op, so maybe there is no use since there are no old tests to compare to. Oh, never had a scan either.

Isn't it amazing how we have the same "disease" but the standard of care is different physician to physician. Makes one wonder about how breast cancer research is done, doesn't it!!

Judy

Posted 7/5/2006 2:27 PM (GMT 0)

Hi, Stef

Starting after 5 years, I got the ca 27.29 once a year.  This August for my 9th year checkup, I was thinking about NOT asking for that test - if all other blood work looks okay that day.  I just get too stressed out waiting for the 27.29 results.  Year before last they came back elevated, had to go back in and give more blood, and that time they came back A-okay.  I aged a couple of years in that wait, and I don't have a couple of years to spare.  Seems things can go haywire on that test too!!

As I've said all along, it's a crap shoot.  If I had a recurrence, don't know whether I'd be able to go back on some form of chemo forever.  Hope and pray I never have to even think about it.

And as far as medical staff goes, let them think whatever they want to think.  You're laying your coins down, and it's their job to be courteous and prompt in their response no matter how many questions you ask.  Remind them if necessary that's it's your life on the line, not theirs.  Why do we have to have the added "benefit" of trying to placate everyone??  Give 'em h*ll if you have to.

Hugs, Glenda

P.S.  Have you heard from Patty Spears?  I've lost her email due to a computer crash.  Help me out if you can.  Thanks.

Posted 7/5/2006 3:28 PM (GMT 0)

Hi Stef! I agree w/ Glenda. You don't owe the staff anything. They are there to help you. My old onco nurse and I did not care for each other. I would tell my onco things that her nurse had or hadn't done and she would say that she would talk to her. Finally, there was an incident that, as the saying goes, was the "straw the broke the camels back". I called the head of the office and told them, in no uncertain terms, that I did NOT want this nurse to touch my file, talk to me, return my calls, etc. That if I found out that she had done any of the above, I would be talking to my attorney. I got a call back w/ an apology from the head of nursing plus the gal never came near me again. I had a different nurse assigned to me when I walked into the office each and every time. So don't be afraid to speak up.

Now, as for the 27-29. That is the test that showed I had a recurrance. I was going back every 3 mos for checkups. When I changed onco in Jan, she said that she didn't do that particular test routinely. I told her that I felt comfortable w/ it and wanted it done monthly. She agreed. I would suggest that you call your onco office and tell them that you want to come in to have bloodwork done for that specific test.

Hugs...Deb

Posted 7/6/2006 12:18 AM (GMT 0)
Stef...I know my onc runs it sometimes, but I don't think she runs it every time.  I just recently graduated to every four months in the office (I had been going every three months), and I'm over 11 years out now from dx.  You know, as long as they tell me the bloodwork looks good, I don't ask what they ran.  In addition to mammos and chest x-rays, I do get bone scans every 1-2 years, and not all oncs do that, I guess.  I DO know that if I ask for a specific test that I want run, chances are I'll get it.  She's run ca125's and ordered tvu's for me because I've put off my gynocology visits and I'm at risk for ovarian ca.  She's ordered FSH and other hormone tests to satisfy my curiousity.  Basically, whatever will make me feel secure, she will do for me. 

I know some people have discovered mets through blood tests( my dear friend, JoAnnie among them), but I know more who had perfectly normal bloodwork and had scans because they were symptomatic.  With the ovarian cancer risk, however, the tests are quicker to show trouble than the symptoms or even physical exam...so I do those regularly.

I would insist on whatever makes you comfortable with this stinking, rotten, insidious disease and nothing less.

Love and hugs to you, girl.

BEV

 

Posted 7/6/2006 1:31 AM (GMT 0)
No real tests or scans here....they do routine blood work. I think elevated potassium (or something, maybe phosphatate or something with a P) can indicate bone trouble. From what I have heard, finding a mets through scans and tests does not increase survival rates for BC. And the anxiety that gets created during the wait process... as far as the ca27/29, I do not think I have ever had one either.

I just learned today that a coworker was diagnosed with melanoma last month, I think she is maybe 39. She also said she has been dealing with cervical cancer for 2 years, goes in for laser tx every 3 months or so. When it rains, it pours.

L&H,
Lori
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