Hello everyone, thinking of all of you always. I just love this site. The markers thread caught my attention and was very relavent for me and i wanted to share a recent visit i had with my breast cancer specialist oncologist. First of all i have to say every time i consult with the guy i am blown away. i expect to have my current situation and plans as laid out by my regular onc affirmed. And that is never the case. the clients in his office look healthy vibrant and have hair
I consulted him because of a scan that my reg onc was concerned about feeling that there was some new activity (liver/lung mets). Her reaction was to switch from femara (which has worked for 1yr+) to aromasin and of course herceptin always. She wanted to re-scan in 6 weeks and if not better then taxane/platinum tx.
Well when i saw the specialist he said, "How'd you feel before this scan?" "great!" "How'd you feel after?" "#%*&ty". Then he asked about tumor markers. My reg onc won't use them in bc for all the reasons many of us have heard/experienced etc. He said he uses them extensively and that 90% of women are sensitive to them and for 10% it makes no difference. Then he said and I LOVE THIS, "I don't treat scans, I treat humans," (how novel-huh?). He said he watches markers (and not just one marker at least 2)every 3-4 weeks and analyzes rises in intervals, speed etc. and will scan if their is good indication to do so. he also said that he likes to visit with the woman to SEE her, listen and check in. Then there is a full picture.
Then he said he wished i would have talked to him before switching hormonal agents because 1) there is only about a 16% chance that one aromatase inhibitor will work following another 2) it will be at least 2 months before we'd know if the aromasin is working (so I'm cancelling the 7/12 scan). 3) He finds that when a hormonal agent has run its course and you pull a gal off it and don't replace it, there is a withdrawl effect that causes the cancer to get BETTER. He had stories of 22 & 16 months before progression among others. Then he goes to a different class of hormonals and sometimes you can do the same thing. He has one woman who has been treated for 6-7 yrs in this fashion and doing great and they are just now considering chemo. he also, by the way can talk about numerous stage IV-ers he's been treating for MANY years (like one gal had stage 4 recur in "91-13 years ago and doing fab). He talked about how i could be treated hormonally for a long time and, "in 10 years there will be so many more ways to treat you." TEN YEARS! No one at my reg onc's office talks like that. According to them i have "exceeded their expectations" (I have another long winded story posted in "profiles").
Anyway I'm thinking of switching all of my care/tx to this man (he's an hour from me so no big deal). He was the only one to suggest that the reason my cancer spread so badly after an orig stage 1 dx was cause i was really Her2 and to recheck the tissue with fish since it had only been ihc tested. and i was strongly positive. i feel he saved my life. My reg oncs were treating me palliatively and felt a few months was all i had in '02.
SO i guess the point, yes there is one, is for most women markers are a good piece of the picture and less invasive/costly than scans, but complement scans a lot. Also a question, i was told that a PET scan only picks up spots that are 2cms or bigger (luckily, i don't have anything that big right now). Does anyone know anything different.
Also second opinions with BC Specialists can be a big deal and I hope everyone has looked into new opinions at some point.
LOVE, LOVE, LOVE to all of you and THANK YOU for letting me share WHEW that was a lot , huh?
joy