Hi everyone, my name is Tracy and I'm from Michigan. It's been awhile since I've done this so bear with me...I used to post on another message board about
5 or 6 years ago. I'm happy to see some familliar names here, so I'm hoping that even though its been a long time, some might remember me. (thanks again Lori, for responding to my post on the other board.
I was diagnosed in 8/99 invasive ductal, 14+ nodes. I had a mastectomy (with reconstruction that failed) and chemo (AC, taxol, herceptin) and radiation. Shortly after I finished treatment the following year, I began having back pain and was dx with mets to the bone and lung in 8/01. The tumor in my spine was bad...it fractured my T9 vertibrae and I had to have reconstructive surgery to my spine with rods and pins. They removed one of my ribs to access that area of my spine. I still have chronic back pain from all that. At the time they also saw a tumor in my skull and a small lesion in my lung, but they were stable at the time. I was put on chemo again, this time Herceptin, Navelbine, and Zometa every two weeks, then every three, and I've pretty much been on chemo ever since.
The summer of 'o3 I started having headaches and my scans showed the tumor in my skull was growing rapidly dispite my regular chemo txs. I underwent radiation to my skull but it only kept it stable for a few months. I began to have chronic pain again, and scans showed it grew larger than before, so this past spring (April 18, 2005) I underwent surgery to remove the tumor. They removed 40% of my skull and I had reconstructive surgery to give my head and face a more normal appearance. The tumor was on the left side of my head and went down into my forhead as far as my left eye. The bone around my eye had to be removed as well as the left side of my forehead and they rebuilt my eye socket. I know is sounds like a frankenstien movie, but they really did a great job putting me back together. Most people who don't know me and who see me don't even know I've had surgery. I do have patches of hair that are gone and have been slow to grow back.
They took me off chemo for this last surgery and I've been off it since, and I'm dreading going back. I hope to get some advice or some of your personal experiences about taking a break from treatment. I still am not 100% from the surgery and everytime I think about going back on chemo, my heart sinks. I just am so tired and I don't know if I'm ready to do it again. Has anyone else felt this way? My family is anxious about me being off it these months and they are ready for me to go back on, but I'm not. I'm not giving up by any means, and if I had any new symptoms, I'd be on the phone with my onc the same day. But I don't really know how risky it is to stop treatment for a while. Has any one tried it? How long were you off? Did you get scans in the meantime? My onc and I have discussed this in the past and she really doesn't press me one way or the other...she says the decision is up to me.
If you can help, I surely would appreciate it. I'd also like to say hello to anyone who might remember me...I don't know what I would have done that first year I was diagnosed without the support of that group of inspiring women. You got me thru some of my darkest days. I'm hoping to find a friendly place here as well during this crossroads in my treatment. Thanks for listening. I welcome emails.