Are YOU a Guinea Pig?

PJ:  

I just love your posts.

I do feel like a guinea pig, but I don't care   If I have to sacrifice for my daughter or her daughter or anyone in my family, I will, and I have gladly stepped up to do so. NO ONE throughout this process  has given me any kind of guarantee.  Lots of statistics and numbers which mean nothing to me because my cancer came back when they told me the "tests" said it probably wouldn't.  

But oh well.  It happened.  It came back. The doctors are not Gods or miracle workers.  They do the best they can.  And why wouldn't they treat you the BEST way they know how? That's what they have dedicated their lives to do.  They don't want to see anyone die.  

I wouldn't want anyone I know or love to go through this.  Test all you want on me.  I don't care.  I am going to survive. And if I don't, then it's all part of the process that will someday get us to a cure for our children and their children.    It's trial and error and clinical studies etc that get us through to the next step.  It's like a war and we are here to battle for the future.  

I made my decisions based upon the medical advice I chose to take from the doctors I trusted with my life.  In the end, it was up to me to decide what to do.  I have no regrets.  I certainly would have done some things different if I knew then what I know now but that's no doctor's fault.

I did what I had to do at the time and regrets are just a waste of time.

Danielle 

When we make treatment decisions on the best available data, we are not really guinea pigs.  After all, guinea pigs have things done to them without their knowledge or informed consent.  Your thought-provoking comments point out the importance of our asking questions and understanding the data behind the treatments our doctors prescribe, especially if those treatments have potentially dangerous side effects and not much data on effectiveness.  Since I had a comparatively rare form of breast cancer, there were very few studies that included people with my type of cancer, so it was a guessing game all the way through treatment.  But I was willing to try anything that made sense.  After all, the treatment successes with the old methods for IBC hadn't been successful, so trying something new seemed like my only chance.  Thanks for bringing this topic to us.

In 1993 I read a little clip in our local paper about the Breast Cancer Prevention Trial needing participants who were considered high risk for breast cancer.  This was 5 years out from losing the last of my 3 sisters to breast and ovarian cancer.  I know that article was written just for me!  Here was something I could do to help research and maybe give me a chance to avoid the disease.  I gladly jumped on the guinea pig wagon!  I took Tamoxifen for 5 years... sweated through the hot flashes, gained the weight, grew some monster fibroids which lead to a hysterectomy, including the ovaries... and that turned out to be a blessing.  Then in 2008 I got breast cancer anyway.  Was it worth it?  YES!  BRCA1 is relentless and without the Tamoxifen, it was pretty darn likely I would have had breast cancer much earlier when the treatments of today were non-existent.  I feel like the experiment was a success for me and many more of the participants of the BCPT.  Tamoxifen does lower the chance of developing breast cancer in high risk populations.  I had at least 15 extra cancer-free years.  I believe I will be cured.  That was not true for my sisters, but it will be true for my daughters.

I have never looked on myself as a guinea pig.  My treatment of chemo and radiation have finished, now I am on Arimidex.  What the future holds for me is unknown just like every man women and child alive to this day.  I am so grateful that I had a choice of treatment and still be alive to spend another day on earth.  If it was not for people like us may it be past or present what hope would our furure generation have to look forward to.  No I do not feel like a guinea pig I feel proud that I am a 65 year old nan that can make a difference