Inspired to Write About Seeking a Second Opinion
I recently joined a closed Face book page about blogging. One of the questions posed in the discussion was what so inspires you to blog/write. The main focus and inspiration for me will always be to inform others about breast reconstruction. But, leading up to breast reconstruction was twice being diagnosed with breast cancer so one greatly influences the other. The inspiration for this blog came from a question posed on a completely different Face book page. The questions were regarding getting a second opinion and what your thoughts were on it. I felt inspired to share my thoughts.
Life’s Book on a Cancer Diagnosis
My experience with second opinions is a lesson to be taken out my life’s book on a cancer diagnosis and all that comes with it. The first time I was diagnosed with cancer was twelve years ago when I had diagnosis one. I processed it as everyone does, with tears and fears. I told my family and friends and sucked them all down that “ugly vortex of cancer” as I call it. Although I truly liked the surgeon I went to I mentioned to him in my initial appointment that I would like to get a second opinion. He said, “Of course. Our patients frequently do.” So I got busy. The day I returned from that appointment I set up a second opinion at MD Anderson in Houston. Why wouldn’t I get a second opinion at a world class cancer facility when I lived there? It’s that important and I’m glad my doctor so willingly and encouragingly agreed.
Do I really want to go through with this process again?
I asked if I could just send my biopsy results over to MD Anderson. Again, that wasn’t a problem. My husband wanted me to get another biopsy just to be on the safe side. I absolutely didn’t want to do that especially when my breast surgeon told me they frequently send biopsies over to other facilities for second opinions. Additionally, the biopsy I had for this diagnosis was the most painful I ever had and I had many previous to this one due to fibrocystic and dense breasts. I just honestly didn’t want to go through the process again.
A Blaring Mistake
I set myself up for a second opinion at MD Anderson. It was going to be the following week. The day after I set up that second opinion the original breast surgeon’s office called to tell me that my biopsy had been mixed up at the lab. They weren’t sure if the report they were reading was mine and now I would have to have a second opinion to confirm the cancer diagnosis. I will write in another post about dealing with mistakes in medicine. We’re all human, right? But, that was a blaring mistake. I had to re-submit my request for a second opinion at MD Anderson as a biopsy patient to confirm the lump in my breast vs. a simple second opinion patient from a reported diagnosis. This was because now they truly didn’t know if I had cancer or not. Another biopsy and another week later it was confirmed that I did in fact have cancer. Riding the roller coaster of emotions!
Second opinion needed? Absolutely and good thing I moved forward with it.
A Second Opinion ~ A Personal Preference
The next scenario has to do with my second diagnosis. It was not a mistake. It was a matter of personal preference on my part as to whether or not to move forward with chemotherapy. Each of these situations led to great research on my part not to mention the anxiety and waiting of finding another physician for a second opinion.
Oncotype Dx and Understanding the Complexities
I had been told by my oncologist after my mastectomy that they would like to send my tumor off for a genomic test called Oncotype Dx. It is a test that helps determine if you are a candidate who would benefit from chemo. I was fine with that because I had already had chemo twelve years ago with my first diagnosis and it was the most difficult thing I had ever experienced. I was feeling hopeful after the results from my mastectomy revealed that I wouldn’t need radiation and that my breast cancer surgeon felt confident that they removed all the cancer.
The score for the Oncotype Dx to determine if you are a candidate that would benefit from chemo is from 0-100. My score was 31. In simplest form the recurrence score had an intermediate risk of recurrence with hormonal therapy. I am on Anastrozole for ten years which is the hormonal therapy prescribed for me this time. Translated from the website a score of 31 meant that it was unclear whether the benefits of chemotherapy would outweigh the risks of side effects. I was on the margin, so to speak.
I had been told by my oncologist that because of another score I received from a Ki-67 that I did not need chemo. I celebrated that day with hesitation because the Oncotype Dx had not been sent off yet. When I asked her what would happen if the OncoDx score came back and showed that I needed chemo her response was, “It’s not likely to happen but we’ll deal with it then.”
Not Again!!
Last day of chemo 2002
I had to deal with it. Suffice to say, when my oncologist called me back into her office because of my score it was not a pleasant day for either of us. I was well aware of the risk of side effects from chemo. In fact, I ended up in the hospital with a neutropenic fever due to side effects of the chemo I was on twelve years ago. I was sicker than I had ever been in my life, losing weight, mouth sores, on and on. Again, another post for another day on the details of that. I knew if I chose to go that route again that I would be on a different regimen but nonetheless time consuming, energy zapping, possible hair loss… AGAIN, and it would mean IV infusions…. AGAIN.
Not this time!
From my standpoint, this situation definitely warranted a second opinion. The charts and information I looked at from my score was based on women taking Tamoxifen. I was on Anastrozole. I had no lymph node involvement. I had clear margins. So yes, I sought a second opinion and it gave me clarity and affirmation about my decision not to have chemo. I was told by both doctors that it was ultimately my decision whether to have chemo or not.
The last statement of an article posted on Face book regarding second opinions was this, “For now, more research is needed to understand how such findings may be affecting patients.” I couldn’t agree more. These test results from both incidences that I went through affected me deeply on more than just a physical level. The emotional trauma that I went through was painful and honestly still remains. I hope I made the right decision not to go through with chemo. I based it on the second opinion and my prior experience with chemo. I had chemo once and here I was again with a second diagnosis. At this writing all of my scans, blood work and tumor markers are normal and it has been nearly one year ago that I made that decision. Fingers crossed that trend will continue. I’m not suggesting anyone follow my course of action because it was my decision. But what I will suggest is this, when it doesn’t feel right for you or when the decision is a huge one to make regarding your treatment and options to cure and be rid of the cancer that has invaded your body, my thoughts…..
TIME TO GET A SECOND OPINION!!
Hi Terri,
Wow a lab mix-up, that must have been extra stress-inducing. Talk about needing a second opinion. No kidding! A cancer diagnosis requires a person to make huge decisions. If a patient needs or wants a second opinion to help make some or any of them, she should feel free to pursue that course of action is she so chooses.
Your blog looks great. Looks like you’re off to a good start.
Nancy, first of all thank you for the kind words. I am enjoying the blogosphere thanks to fellow bloggers like you!!
The lab mix-up was very stress-inducing. We had already told family and friends I had cancer so we just sat on it for a week and a half and didn’t tell them about the mix up. It was difficult to just tell them we were waiting on more lab results and a second opinion when we weren’t sure what was going on. I agree, most patients know when it’s time for a second opinion and they are deserving of that option.