Markers

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

My onc is a breast cancer specialist. She also said the same thing: that there would be 2-3 months before we could see if aromatose inhibitors were working or not. BUT, she doesn't use tumor markers routinely.

I also know that another top-rated cancer hospital, Harvard, doesn't perform tumor markers & routine scans (according to a close acquaintance).

Joy, do follow your gut feelings! You know your own body than anyone else can. Good luck :-)

Hi, I must be a contradiction with the Aromasin, I took Femara in 2000 and did no good, about 2 years back I was waiting for radiation to lymphs in the neck so started Aromasin, in a matter of days the lumps started to go down and by the time I was due to have radiation there was nothing to radiate. Also went on Aromasin and Herceptin after finishing Navelbine but lump persisted in neck and now being treated with agressive radiation, Herceptin/Taxol and Carboplatin, having a result, slowly but then this lymph gland took 12 months to be finally confirmed as malignant. Aromasin also works when Tamoxefin stops working.

Hugs Lyn

Hey Lyn, thanks for the encouragement. I'm so happy you have had some great results for your own sake and glad youu have shared that with me. I've always said about myself that i never so anything like anyone else, wheter I try or not. So i could be an exception too. After all aren't we all here at Her2 Support exceptional!

LOVE, joy

Columbia doesn't perform the scans and marker tests routinely either if there is no evidence of disease or symptoms. I am FINE with that. I am VERY aware of my body, and I see my onc often at this point, and it would really hurt my quality of life to have to live from scan to scan, blood marker to blood marker. I have other blood tests, besides - liver, kidney, chem14, etc....I feel good about this.

My pleasure, I haven't been posting as much lately, I never seem to have much time to myself, this devil has been like a full time job and only just recently I have managed to have a couple of days off from anything to do with medical.

Luv & Hugs Ly

After mastectomy and four AC my tumor market went up. Istarted at 70, went down to 47, and now amback at 61. Has anyone had this happen? Does this mean mets? I'm so freaked out!

Hi Jan,
I know its very scary to have them vary. My onco always tells me they can vary. Mine go up and down 5-10 points. He says he looks for the steady increase. You can always have him run it again or do a pet scan or ct to hopefully ease your mind.

Jan,
Markers can rise and fall for a number of reasons that have nothing to do with mets.. many oncologist's don't use them, since they are so unreliable. For some people they work, for others they don't.

Don't panic just from markers.

hugs

Hi there, I was paranoid about my markers, I have been doing this since 1998 so I am just about an expert when it comes to the CA 15-3 if that is the one you are referring to. Under 30 is normal well I have never been over 30 and I have been having continual treatments for lymph nodes and skin mets. My last marker before treatment was 6 and I had a positive lump in my neck that took 12 months to finally be diagnosed by MRI nothing else showed it up, and now after a further 11 weekly treatments being Her/Taxol/carbo and radiation to the neck my marker came in at 21, so I am beginning to think with our kind of BC which is treatable with Herceptin, maybe the increase is better. I used to hover around 10 to 15 and felt safe, now I don't know any more except the lump is going down. The markers are only one part of the big picture, it is when you start heading up to the 1000's you need to look further. Hope this helps. Even drinking alcohol and menstration can change the marker figure.

Love & Hugs Lyn

Markers seem to be a test we do not see in Canada. Any Canadians familiar with this and is the coding different than in the U.S.
Thanks,
Al

Hi Jan,
I know its very scary to have them vary. My onco always tells me they can vary. Mine go up and down 5-10 points. He says he looks for the steady increase. You can always have him run it again or do a pet scan or ct to hopefully ease your mind.