Hi Linda,
I know exactly how you feel. First, let me say that the trend seems to be to hold off treatment as long as possible now. The reason is that in some cases treatment is as bad as the disease and the dr's are finding that in some cases if they start treatment too soon, it loses it's effectiveness and if you're one of the unfortunate ones who experiences severe side effects and has to be taken off the drug, then you're now in a worse position. (am I making sense?)Like you, however, this makes me extremely nervouse because I also feel that the earlier it's caught (or if chemo is used as a preventative) that it would stand to reason that we are better off and there is less disease to battle. I am trying to not the play the "what if" game right now. I was in a situation where my onc at the time was basically damn the torpedoes, full speed ahead. Now, possibly as a result of this, I will probably have to be pulled permanently off herceptin and almost all chemos due to extensive lung damage and now it looks like I have permanent heart damage. Granted when I started this in April, 02, alot of info wasn't available, so I don't blame the dr. But I am permanently disabled and oxygen dependent. The good news????? I'm NED. So.............even though I did not have regular scans and I should have been taken off ALL drugs more than a year ago, who's to say that in spite of the damage, perhaps this man saved my life. Then again what if I had a different dr who played it more cautiously, who may have stopped the drugs and then the disease progressed. Or perhaps with a dr who was more conservative, they would have been better at regulating the drugs and I would not be in this position. We have no way of knowing what the outcome is going to be and I think we can drive ourselves crazy trying to second guess our medical teams. I had to change oncs due to the complications I have had because of treatment. I was under the care of 2 oncs, a cardiologist and a pulmonologist. Back in Sept. I was getting so many different diagnosis/prognosis that my husband and I were under the impression I wouldn't make it to the summer. It was then we decided we needed to be under one roof and switched to a cancer center so that we would have the benefits of dr's who were more specialized and worked together.
Like you and all the other women who post here, I am truly scared. I feel so fortunate right now, but I know I am walking a tightrope without a net and I know I shouldn't look down, but I do. I just keep praying that I am making the right decisions and that my dr's know what they are talking about. To put your life in the hands of another is such a terrible position to be in, but what choice do we have? Sorry to ramble on, but be your own advocate and get lots of opinions and discuss your fears and concerns with your dr. They are trained to deal with all aspects of this disease.
AND WE ARE ALL HERE FOR YOU
Geez, I hope I was of some help here.
el