How do you know herceptin isn't working?

[Unregistered]

I am scheduled to start herceptin with taxol at the end of Oct after finishing 4 cycles of A/C. I am er-pr- her2+++ and concerned that herceptin may not work for me. (I'm in my negative mode right now). My onc doesn't do scans until there are symptoms nor does he do tumor markers. I'm stage 1 (grade3) and fearful of developing mets. I'm 46 premenopausal and bc was discovered by a routine mamogram. The doctors were surprized that they could not feel the lump, it probably was deep. Had lumpectomy with negative sentinal node for 2 masses 1.5cm and .4cm and am concerned that on path report it stated that there was possible lympathic invasion. My onc tells me right now I don't have bc in my body but I fear there is maybe 1 or several lost cells running around looking for a place to settle. I want to be very aggressive even overkill to destroy all of these cells. Sounds like for neg hormone people herceptin is the only drug and if that doesn't work then what?
Will my life ever return to normal, will I be able to make plans for the future? How do people cope with so much unknown?
Thanks for letting me vent

[Tom]

Dear Unregistered Guest,

Take a deep breath and try to calm yourself down. The people on this website will be glad to help you and answer any questions you have, and find you the answers if they don't know. The first thing you might want to do, is to register on this site, or at least put a name to your posts, even if it's a fictitious name. At least then we will be able to mentally add you to the "family". This is a very warm and personal site, as you will see as time progresses.

As far as your treatment plan goes, I will gladly give my opinion, but please read and learn as much as you can here and other trustworthy places on the Internet, as well as from your oncologist of course. As far as any relationship with your oncologist goes, I like to think of the phrase "trust but verify". I'm sure some will be horrified to hear that, but it is YOUR life that is important, not the oncologist's that we're talking about.

It sounds like you are in pretty good shape for the most part, as the tumors were under 2 cm to begin with, and your sentinel node biopsy was negative. I am a little confused about the pathology comment that suggested lymphatic invasion though. You might want to discuss that at length with your oncologist. Believe me when I tell you that there are lots of women that would be thrilled to have a STAGE I status with the "beast", so don't get too upset at this point. My approach, after some time has passed since my Mom's diagnosis, has shifted to one that assumes that there are ALWAYS cells that got away. It is the safe approach to the question, and will help you insist your doctors be vigilant and aggressive in your treatment, but that's just my personal opinion.

As far as treatment options, there are lots of things out there useful for battling hormone negative cell lines. Remember that your arsenal includes surgery, chemotherapy, radiation therapy, Herceptin, and many alternative approaches that include diet changes and vitamin and herbal supplements. I remember how upset I was when pathology revealed that Mom's tumor was ER-/PR-, particularly after the surgeon virtually "assured" me it would be ER+ and manageable with Tamoxifen. I was in total despair at first. Obviously, Herceptin is an important component of your plan. Don't start out by assuming that it won't work. Herceptin is an amazing development in the treatment of this disease. As far as your oncologist waiting until you become symptomatic for mets, I would sit down and explain that you are not willing to sit back and wait until you get really sick before you act. I think that most folks on this site will agree when I say that you MUST take charge of your care. There are appropriate time periods that follow any treatment before you undertake any of the many follow-up tests for metastatic disease, and you should discuss that with your doctors. You have a lot of tumor marker studies available, as well as MRI, PET, CT, and bone scans to look for the "beast".

Perhaps most importantly, try to be calm and clear headed so that you can make intelligent choices about your treatment plan. You CANNOT fight this thing when your fears are spiraling out of control. Remember that your mental outlook can and does have a real biological impact on your body's ability to overcome this disease. Give it a jump start by being positive.

And lastly, though I think it should be the first thing you do, get in touch with your Creator. Ask for the strength and wisdom to do the right things. He is there for you no matter what road your disease takes down the line, so put your trust in Him. When you do, you will find an inner peace and strength that will amaze you. The folks here on this site will be a great comfort to you through this struggle, so visit early and often, the way Chicago voters always do at election time...lol. Sounds to me like you are on the right path so far. If anybody disagrees with any of my observations or comments, please jump in and set me straight. Take care and keep your chin up.