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Old 05-29-2016, 01:04 AM   #39
VDC
Senior Member
 
Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Norkdo,
THANK YOU for the candid and obviously caring response! Let me say that I agree with everything you have said and the things that others have said as well. That may sound contradictory given the things I have posted, but it is not.

In fact that is why I "ran the other way" from the clinical study that is "watchful surveillance." Yes, there truly is a medical FDA approved study for women with DCIS...and the study is to "do nothing and see how many progress." The craziness of it was beyond my understanding.

I am a scientist by trade, by background, by training, and by personality! It is not only what I do, it is who I am to the core of what makes me "tick." I have done research on myself, my HoFH son, and my husband (when he lets me.) Being true to myself is to throw my cancer into a clinical trial. Anything else, and I would live with a lifetime of regrets....and I'm not talking a little regret. It would be a betrayal of who and what I am. My family has supported my desire because they understand that anything less would be to deny who I am.

Do I understand the risks? Yes. My aunt died of metastatic breast cancer. My mother died from treatment for Hodgkin lymphoma. My dear friend passed away from ovarian cancer. I have seen it first hand. I have seen how it devastates not only the individual who has it, but also their families and friends. And I live with the hole left by these people who were an intricate part of my life. I do understand.

I'm not scared, or running. I've met this one head on. In February, my oncologist sent me to a psychologist because she thought I was just too calm about my cancer! It made me chuckle but I went! After an hour, the psychologist told me that I was one of the most well adjusted individuals she has met and that I have superior coping techniques. I never saw THAT coming. But my oncologist hasn't mentioned it again...and that was when she stopped trying to twist my arm on this. I do know what I am doing. It isn't denial. It isn't fear. It isn't naivete.

And you are right. Cancer is an unpredictable foe. There is no way to predict the future, or what path this cancer may take. That is just the point. There is no way to know. We do the best we can with the information given us by tests, by imaging, by biopsies, by the technology that currently exists and even then, it is unpredictable. We can look at statistics, and confidence intervals and standard deviations. But even then there are outliers...those data points that just don't fit the data.

I agree with everything you have shared, and I SO appreciate your heart! I could hear your caring through the written words. And you have spoken well

I as a scientist need to be true to myself as well. And because this cancer journey IS so uncertain, the path is not always the same. Don't worry I chose not to join the "wait and watch" clinical trial for a reason! I don't intend to wait forever.

Truly thank you for your heart caring message.
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