Then it was my turn. I have been very conflicted about treatment for the LMS. The sarcoma specialist, Dr. Keedy, who Dr. Thompson (my local oncologist) sent me to see, recommended starting on doxorubicin ASAP. However, when I saw Dr. Thompson, he seemed very reluctant to start it. He recommended waiting until after Labor Day and then running a scan to see really how slow growing this really is and re-evaluating the next day. He is really concerned about the med, especially that it's the first line med, and what it's going to do for my quality of life, especially when I feel relatively well, all things considered.
I acquiesced. But, as the weeks have gone on, my discomfort level is becoming more a daily issue instead of an occasional bout, and my anxiety level has increased some, wondering if I made the correct decision, and really...what I don't know to make the decisions.
We spent almost two hours in her office. She looked at path reports, scans, dr. reports, clinical trial offerings, drug info, life expectancy rates, everything and more. And we talked about it all. We talked about the fact that we really don't know what the growth rate of the primary tumor is because the biopsy was from one of the liver tumors. In all cancers, but especially sarcomas, it is not uncommon for the mitotic rate and genetic makeup of tumors to vary some. When the surgeon did the biopsy he went for the easiest, least complicated, and least likely to cause potential damage to surrounding tissues and organs...he went for the one he did. It is NOT the primary tumor. I knew all of this but really hadn't put it together.
We talked about how right now I'm in good health, but as the cancer advances it will take its toll. Duh! However, that also means that right now I have a better chance of overcoming the toxic effects of chemo than I will as the cancer advances.
We talked about the various kinds of standard treatments for LMS - there aren't many - and this, in my case, at least right now, is inoperable. Radiation isn't even a good option. Chemo is my best bet. And, doxorubicin, AKA "the red devil", is first line defense. She said that it is the chemo that all the movies and tv programs that depict chemo effects is based on....joy...."the red devil" to fight "the purple dragon" (AKA leiomyosarcoma) - sounds apocalyptic! Lol!
We talked about the five year survival rate of about 20% is WITH treatment. We talked statistics. And we also talked about how staying alive is crucial in order to be around when better treatments and even cures come. Five years ago there was no cure for GIST - today there is. Knowledge is exploding but it will do me no good if I'm not around to take advantage of it. And, of course, there are no guarantees anyway...in the end...the Lord is in charge.
In the end, her counsel was to spend time talking to my family and to pray about it. As she hugged me goodbye, she asked me to consider two questions: 1) if I wait because this seems so slow growing but it gets away from us...metasticizes (it will probably do that anyway as the disease advances), will I regret it? My answer is an emphatic yes. I would. 2) if I fight this agressively and I end up with some, if not all, of the nasty toxic side effects, will I regret it? No. I don't want the side effects! No one does! But I wouldn't regret having tried. Those two questions distill my choices and my desires to their very core. Now...saying I want to fight and will do whatever it takes, when I'm feeling relatively good, is a LOT different than when it gets bad! But...I feel more settled than I have for a while! And that's a good thing!
