lauren, any feedback on poll with herceprin?

lauren, i went back thru the archives to reread your poll, did you come up with any consensus? Alot of us are still on Herceptin and are NED,thank the powers that be. I did read profiles in courage also and some women got mets while on herceptin and/or chemo. Bless them. Someone got mets w/in 3 months after and others are 3 to 5 years out,(some were on Tamox) NED. It was hard to get a feel if there was some link between the ones that did met/ because not all history was available.(ALOT OF THEM DIDN'T RECV HERCEPTIN AT FIRST DIAGNOSIS) WHAT I DID GLEAM IS THAT MOST TREATED W/ HERCEPTIN ARE STAYING NED. Did you find any type of link? My question and maybe some that responded to the post can answer this, but after the one year of herceptin, did there onc's continue any blood tests or scans? I know I've asked before and your not inclined to do anything unless sympotoms appear, but I was just wondering if they reported the symptoms or a scan picked them up. My onc will do no blood work or tumor markers, only chest and mam once/year. My surgeon however will do blood tests (no tumor markers) for me and will do mam every 6 months, but will see me every 3. lauren, I am getting on with a full life, but this just doesn't feel right, my onc is so nonchalant and after reading the posts on this board, HER2 is so sneeky, I feel more should be done or watched more closely BY ONC. Do most women in early stage bc have tumor markers done? or is it for Metastatic cancers? I've never had any done. Thank you all for any info and EVERYONE else, just very curious. Will be done with Herc. Dec 15, 2004/ KINDA A SCAREY...Onc won't give off protocal. By the way will be looking for new onc after study is over.
DX 10/03, STAGE 3B,GRADE3,HER2III+, ER/PR NEG.HER2 BY FISH 7.6 AMPLIFIED, 3/12 NODES POS.TAXOTERE/CARBO/HERC FOR 6TX, 52 WEEK HERC. HAD 30 TX OF RADS. MASECTOMY, NO RECONSTUCTION YET, LEAVE MON. TO SEE DR. CHANG IN BALTIMORE FOR S-GAP. VERY EXCITED. PLEASE DON'T RESPOND WITH WITH GETTING ON WITH MY LIFE, I JUST WANT SOME COLD HARD FACTS OR OPINIONS. I KNOW IN MY HEART I WILL BEAT THIS. JUST WANT INFO TO PRESENT TO ONC OF FOLLOW UP CARE AFTER THE FIST YEAR/ SORRY THIS IS SO LONG. Take Care all, kristen

Kristen,
I am in the same boat as you. I will be finishing one year herceptin in march. I had AC then 12 taxols then herceptin. You had carbo/taxol/herceptin? I asked my onc if i could stay on it also,but was told the same thing,they wouldn't give it to me off label either. I've never had any markers done, but have alot of scans due to headaches. Nothing found. I have the same question as you, what next? Just wait? Maybe we could ask for the new CellSearch test that has been on the news. I know it is for metastatic, but i don't know why we couldn't get it just to see if we have any in our blood stream? And as for your dr. not doing scans, i think if you want them, ask for them and they should do them. I know my dr will do them if i ask for them. I had a pet last feb. and i'm going to ask for another in dec. just because i want to know what is going on in my body. WEare the ones with this disease,NOT our drs. They are there to help us through this, but we have to be our own advocates. I have done alot of searching for any kind of statistics on the adjuvant herceptin trials, and not found anything. I think alot of it will come out in dec. at the san antonio breast cancer symposium. sorry this got long!

Dear Ladies:

I assume that you both are completing treatments after an initial diagnosis of bc and not a recurrance. My wife's experience was similar to that which you are facing. After her initial diagnosis 13 years ago she took 6mths of CAF, 36 radiation treatments and 5 years of tamoxifin. During the first 5 years after diagnosis she was only scanned during the first year, then just a chest x-ray for the next 4 then nothing. We initially met with our Onc every three months then every six and after 2 years we met with him every year.

From 5 years on we met with the Onc once a year and had no diagnostic tests done whatever. In our 11th year our Onc declared my wife "cured" and 6mths later we found a 7cm tumor in her lung and three 1cm tumors in her liver. Fortunately, for Herceptin she has been NED for the past year and one-half.

I would suggest that you press your doctors to at least do some scanning on a yearly basis after you complete your treatments.

Thanks for posting this. I could have written your exact post! I am on herceptin until May 05. My onc. doesn't believe in scans without symptoms either - which I think is a crock, since I have a >50% chance of recurrance. I believe in my heart I will beat this too....I just get a little nervous seeing the stats. I have a 2 year old and baby at home and want to see them grow up.

Dx'd 1/04, Stage IIIC, 11/18+ nodes, ER-PR+, Her2+ (2.7 on the original test and 7.8 on FISH), mast. w/o reconstruction (yet), 4 @ 3 weeks of A/C, 4 @ 3 weeks of taxotere, 1 year herceptin, and soon to do 33 rads and tamoxifin.

Hi Girls -
It is my impression from the posts on this board during the past year, as well as my experience and knowing other HER2 postitive women, that any of us with a high grade, highly overexpressed type of disease NEED MORE surveillance than some of the other BCs with a different pathology. As high risk patients we have to INSIST, as some others suggest, on more frequent routine scans.
But, to me, based on all the questions as to what to do after completing initial treatment, there needs to be more info on what WE PATIENTS need to look for in our own bodies. We feel more like a chick dumped out of the nest without enough information with which to go forward in oiur lives.
Sure, the oncs have new patients to take care of, but their job is not really finished with us, as many patients are made to feel.
Keep on asking the good questions!

Hi Kristen. I am sorry I don't have answers for you. My poll was very informal, and not at all scientific, and I basically gleaned as much knowledge as you were able to: that many women who were early stage and who took herceptin are staying NED, but a few are not...so far. It is so early in the game! Who knows how things will play out as time passes? My feeling from what little I learned is that Herceptin was a wise choice for me, and I would do it again in a heartbeat if I had to choose all over again. I would do it exactly the same way, although I would probably go dose dense on the AC and just get the torture over with faster.

I do not get scanned at all, and I had a double mastectomy, so I don't get mammo. I get palpated A LOT. Whenever I see my doc, she feels all of my danger-zones for lumps. I see my doc every two months or so. I see my breast surgeon every year or so. I have no ovaries and no breasts, so I see my GYN only every year, give or take a few months.

I am feeling great, and I hope to continue this way until I am old and gray and sick with something only very old people get. Or maybe die in my bed at 95, "shot by a jealous spouse" (who was mistaken, of course).

I hope the same for you...