Thank you all for your stories and support. Today is my first post. I was Diagnosed in 10/03, Stage 1, ER PR-, HER2 +. Had double mastectomy, node negative and elected the BCIRG 006 Trial and was fortunate enough to get the leg AC x 4, Taxotere x4 including weekly Herceptin and then 9 more months of Herceptin. I finished end of March. Do you know anyone else in this trial and do you think the outcome will be the same with Taxotere as it was with Taxol?

The other question I have is how do you follow up. My Oncologist says that the only testing I need to do is tumor markers and possible brain MRI's. He says the outcome of finding a reaccurance with symptoms and finding it in a scan is the same. How have you all handled this? It makes me very nervous.

Thank you.
Diane

I am in the BCIRG 006 trial and so far I'm NED. I was assigned to the taxotere/carboplatin x6 and Herceptin for a year. I began the trial January 15, 2004, and had my last treatment of Herceptin was January 4, 2005. My physician takes tumor markers but beyond that nothing other than the usual yearly mammogram, plus I've requested sonograms since the tumor never showed on a mammogram. Next month I'll be getting a follow-up MUGA for the trial. At this point I'm still being checked every three months. My doctor did send me an email telling me that although the results were not out on the BCIRG 006 trial, it was looking very promising, and she sent the news about the other two trials.

If you have any more questions, I'll be happy to answer them.

Bonnie

I'm in the same trial, same arm. Dx'd 1/04. I have follow up tm's and scans, but they are at my request. My staging is IIIC.

Hi Diane

I'm also on BCIRG 006, the same arm as you. Stage 2a, node negative also.

I have 2 more shots of Herceptin to go and am due to see my oncologist next week. I'll be asking her about follow up, as at this point all I know is that I'll be having a MUGA in August, a yearly mammogram and 3 monthly checkups. I'll be asking about other scans etc , for when treatment finishes so I'll post again when I've got some more info.


All the best

Cheers
Pauline

Bonnie, Rosebud and Pauline, Thanks for answering. Lets keep in touch. Good luck. When you said you get scans, could you be a little more specific, ie, CAT or Pet, etc. I am trying to decide for my confort level which way to insist. Again, good luck.

I get bloodwork every 6 months (again my request) and a chest x-ray every 6 months. I have asked for a PET this summer, will probably do it once a year, just for state of mind. Pretty much, you'd have to get them really often (like monthly) to be assured of catching something the second it came up. It's more just trying to be in control of something in my heart I know I'm not in control of. When my tests come back normal....I feel like I can move on with life.

Diane,
I quizzed my onc closely about not doing scans (I was stage III at initial dx). As he explained it to me, studies have shown that routine scanning does not reveal new cancer (or a metastasis) earlier than scanning based only on symptoms in the patient. It's hard to believe, but apparently you will have symptoms around the same time that anything would be apparent on a scan for the most part. PETs may be the exception, but they are expensive and expose you to radiation as well.

That having been said, my onc scans me at the drop of a hat! Dizziness for two weeks with visible fluid behind one ear? Do a brain MRI. Achy ribs for a few months after radiation? Two CTs and a bone scan. Numbness in the back? Thoracic MRI.

I think I'm beginning to glow.

I know that it is uncomfortable to not be scanned regularly, but that practice seems to be based on studies and is the norm for the most part. Just be sure to report EVERYTHING to your doctor. It's your job to report symptoms and his or hers to decide if they mean anything.

Good luck!
Hope M.

Hope and Rozebud,
Thank you so much for your reply and I will tell my Dr. everything. I have made up my mind that by the end of the year I will insist on a PET/CT scan. I think he will be doing regular Brain MRI's for my Onc. has had a few surprises in that arena.
Don't you wish we could have Herceptin at least once a month for insurance. Maybe that day will come. It would also be nice if it were an oral med. I think I have heard it might become infectable. Have you heard of this?
Good luck.
Diane