Reporting on THE Report

I got the results of my final pathology report last week and have spent some time on an emotional roller coaster tying to understand, digest and process the information.  My breast surgeon called while I was waiting in my radiation oncolgist's office last Thursday, so I rushed outside to take the initial call.  Not the best setting or conditions to take such an important call, so my understanding of the details was somewhat skewed.  She told me that my margins were negative (sounded good to me), two of the total thirteen lymph nodes they took were positive for cancer (sounded bad), and then she said the tumor measured five centimeters but that wasn't always an accurate reading so she needed to speak with my oncologist (sounded confusing). There was also some confusion about my HER2 status, which ended up being unfounded, as I'm still considered HER2 negative. So I felt like I was in a holding pattern for a little while.  

I did some research and tried to glean whatever additional information I could find...which wasn't much.  I kept on with my scheduled appointments, which included getting my final drain out on Tuesday (hallelujah!) and getting the go-ahead to raise my arms above my head. So we went almost immediately to a CT scan that same afternoon, where I had to hold my left arm (the one with the huge axillary dissection scar across my armpit) in an extremely extended position, straight above my head and slightly bent so I could grip a handle for about thirty minutes for imaging and tattooing. They were taking images that will help determine my course of radiation.  I almost fainted due to the pain from contorting into that position with that arm. I don't think that is what the nurse had in mind when she cleared me to lift my arms!

On Wednesday, my mom and I visited the breast surgeon first thing.  She told us the report was disappointing, as they had hoped the chemo would be more effective, at which point she told us there was quite a bit of cancer still present in the tissue they analyzed. She did remind us that the tissue was removed from my body, but in all honesty, it didn't sound very promising.  I have to admit that I cried pretty hard after leaving that appointment, because even though we hadn't received much info at the meeting (she mentioned that my oncologist would give us the full report), things sounded grim to me.

David and my dad joined us at the afternoon appointment with my oncologist, which luckily had a decidedly more positive tone. My oncologist spent a considerable amount of time walking us through the findings of the report and answering our seemingly endless questions. First of all, the margins refer to the edges of the surgical area, so it is in fact good for those to be negative.  Just in case, radiation will zap any cancer cells that might be hanging on in the breast/neck/chest wall area. The two positive lymph nodes really weren't an enormous surprise, seeing as how the initial ultrasound turned up two problematic nodes, and the one they biopsied was in fact positive. However, that does increase the chances that cancer "seeds," or clumps of cells, made their way into my body.  Hopefully the chemo took care of the seeds, but if not, I will be taking medication to block the production of estrogen.  Estrogen is what very clearly fuels the cancer in my body, so these medications will ostensibly starve any existing cancer while preventing future cancer from growing and spreading. Dr. O assured me that these meds, which I will take for ten years, are extremely effective with my type of cancer.  Additionally, results from a new study were released last week, and it looks like I'll be taking a related but slightly different form of medication than what I had originally thought, due to positive results from the study. Yay, medical progress! Finally, Dr. O explained that while the report still measures the tumor at 5cm, it is actually just a measurement that finds small clumps of cancer in the area that previously held the large solid tumor. So while the measurements say 5cm, it isn't a solid mass but small specks. The chemo was effective in that it crumbled the tumor from one large mass into much smaller masses, but it did not eradicate the tumor entirely.  This explains a lot because I was baffled by this particular component, as we could hardly feel the tumor anymore!  Furthermore, Dr. O told us that 97% of patients with estrogen-fueled cancer, such as yours truly, do not see complete elimination of cancerous masses.  Of course I'd love to be in the minority, but my results were not unexpected, at least to my oncologist.

I inquired about further body imaging (onc does not support unnecessary scans or images), immunotherapy (something to keep an eye on but not relevant to breast cancer just yet), clinical trials (nothing appropriate at the moment). He knows I'd like to be as aggressive as possible. For now, the treatment plan remains the same: radiation is next on the docket, and I will be starting the ten year course of medication soon as well. 

The bottom line: sure, it would be great for all traces of the tumor to be gone and to have no lymph nodes involved, but it isn't shocking to get the results that we did get.  And while they aren't perfect, they certainly seem manageable, and we have a solid plan in place. Dr. O even went as far as to declare me "cancer free!" I'll take that! Along with my daily dose of estrogen blockers!

So, with many more answers, a greater understanding of where we stand, and a very sore underarm, we packed up and left Houston--for the time being. My aunts were kind enough to come down and help us haul all of our stuff back to Austin. My in laws kept very busy here in Austin, and I will expand on their amazing home projects in an upcoming post. Suffice to say, it was a very happy and pleasant homecoming!

My six week course of radiation begins on June 23rd, so I will be back in Houston again soon, but I am enjoying a few nights at home and I have been cleared to join my family on vacation next week. Dr. O said it will take 1-2 years for all of this to move from the very forefront of my thoughts at all times to the back of my brain, but I'm going to try to push it aside while we unwind at the beach next week. Maybe not all the way to the back, but at least off to one side. Thank you for all of the concerned emails and texts. I hope this explanation answers some of the questions you have asked or been wondering.