Monday, June 18, 2012

Do you REALLY have a choice?

When is comes to medical care, I have to sometimes wonder...do you really have a choice?

I used to think I did. 

My mom passed away from breast cancer in December 2010. Because of this, the docs recommended that I start getting mammos every year a full 10 years before my mom's first diagnoses. My mom was only 44, so that put me starting mine at age 34. YIKES! But, I did. {Looking back, I wish I had never started them until the normal age recommendation of 40 or if I felt something.}

Sure enough, they found a few cysts or possible fibroadenomas. They are super tiny - we are talking less that 6mm and they cannot be felt. No biggie. These are common with age and my type of breast tissue. I had gone in 5 years before to get a fibroid cyst checked out that I could feel (which went away, by the way). The only major finding between that mammo and this one was one of the cysts/fibroadenomas contained a few microcalcifications (2 or 3, I think). Again, not a huge cause for alarm because microcalcifications are not cancer, but they can be an indication of a precancerous condition. Microcalcifications can develop with age and very few cases ever go on to becoming cancer. The radiologist recommended a biopsy. I did A LOT of research and decided to take the less aggressive approach and monitor those areas with a 6 month follow up (which was his alternate recommendation should I decide against a biopsy). 

I had already decided prior to going in for this next follow-up that I would get a lumpectomy if anything had changed. So, fast forward 6 months later. Another mammo and ultrasound...and guess what, no changes! Everything was stable. The radiologist even put in my report, "no definitive findings for malignancy are evident." 

He also noted the previous radiologist's recommendation for a stereotactic biopsy and recommended the same. He also said, if no biopsy is performed, then another follow-up 6 month mammo and ultrasound should be considered. So, I chose that option. 

Now, I feel like I need to state that I am not an idiot and do not flippantly make decisions. I do A LOT  of research from reputable sources in order to make informed decisions. I also take into consideration the type of cancer my mother had. To make a long story short, my mother had a rare, super aggressive type of cancer. It spread like wildfire anytime you messed with it. It was recommended to my mother NEVER to get biopsies ever again, but instead remove the entire mass or treat it in place. 

Now you see my hesitation with getting biopsies. I would rather get a lumpectomy than a biopsy which  could ultimately spread the cancer. I know this occurrence is extremely rare, but it happened to my mom...and if I ever develop cancer, I could very well have the same rare aggressive cancer she had and that is a chance I am NOT willing to take!

So, why all the fuss?

The radiologist stated I could opt for another 6 month follow up mammo and ultrasound and I called my gynecologist to relay this message and make the appt..

Well....

About 4 weeks later, I receive a certified letter in the mail. Apparently, my "case" was presented at a multidisciplinary conference. My mammos and everything about me was discussed. I don't know anything about all this and I'm sure these things are standard procedure and happen all the time, but I have to tell ya, I felt a bit violated...a discussion about me and I wasn't even there to give my thoughts and opinions on the matter?!? I tried to explain to the gynecologist at my last visit why I was choosing the biopsy-free less aggressive course of action. After all, it was my mother's cancer history that placed me here getting these mammos, yet, they didn't want to take into account her type of cancer. 

I thought she understood and, at that time, she fully backed my decision for taking the less-aggressive approach. So, what has changed? My recent mammo and ultrasound showed NO changes and the radiologist even stated that I could go this route if a biopsy was not chosen. So why all this continued discussion? Why these attempts to change my mind? I have to tell ya, I just don't get it.

I feel like I am being "told" I have a choice, but their actions speak otherwise.