I went in to discuss my pathology reports with Dr. M today. It was so good to see her.
I was very eager to hear the results of my Oncotype DX test, which we have spent 2 weeks waiting for, but the results were not in yet. They do expect them today or tomorrow, but– we are keeping it interesting for you all again–these results will not tell us anything because they sent the original biopsy specimen instead of my surgical biopsy specimen. So now, they have to do a second Oncotype DX test, which means 2 more weeks of waiting…CAN YOU BELIEVE THAT???
Dr. M was not happy about it, at all.
We were so relieved that it looked like insurance was going to cover the first test, but to get approval for the second test may be tricky. These tests are $3,000 each! All I gotta say is, if insurance does not agree to cover both, it is a good thing Todd’s dad is an attorney and can give us free legal advice!
Todd wrote about my pathology report here, and we really didn’t learn a whole lot more. The reason why a second test is so important is because there are 2 different type of cancers we are dealing with now. We knew about the Ductal Carcinoma because that is what showed up on my original biopsy. The Lobular Carcinoma was shown in the surgical specimen, the tissue that was taken during my mastectomy. The Oncotype DX test that was just done on the Ductal, she expects to come back as high risk, but that does not matter because chemo took care of that. The second Oncotype DX test they do, which should have been done in the first place, will be on the Lobular Carcinoma tissue. She said if she had to guess, she expects it to come back as Low risk, but is unsure and we just have to wait.
Low risk would mean I can go straight onto radiation, then hormone therapy (taking a pill, Tamoxifen, for 5 years) which would be great.
Med. risk, we are not sure what we would do. It is a gray area.
High risk we will for sure do more chemo.
Lobular cancer is interesting. It is more quiet, almost stealth like. It is slower growing, but does tend to spread to lymph nodes like mine did. It is harder to be felt, which is why it seemed like all that was left was scar tissue. It responds well to hormone treatment, and less to chemo treatment, which could be why the Ductal is gone but the Lobular is not. It does not show up as well on scans, which helps makes sense of my negative PET scan. The lymph nodes did not show up on scans because they were minimally positive. .8 centimeter is too small to show up on scans.
She sent us home with the surgical pathology report, and I have to tell you, it is WEIRD to read about yourself in this way. Gives me shivers to read about my insides being removed and studied on the outside. Here is an example of what I mean, again, just to keep you entertained:)
A. LEFT BREAST TISSUE: Received fresh (ew) in a container labeled “Bowman, Amy S. (that’s me!). Left breast tissue, two pieces with axillary tissue (lymph nodes) attached is 14.5 x 9.0 x 2.0 cm left mastectomy specimen. (told you I was small chested:)). On the anterior surface there is an ellipse of skin with a central nipple (yes, I had to go there! That was the weirdest part for me to read so I have to share!!) The breast consists of 40% gray (gray? is that normal?) fibrous and cystic soft tissue with a definite infiltrating lesion. (so glad to have that sucka out)…
…ok I’ll stop there, but there are 3 more pages:) So. Very. Weird.
But not sad, because I must tell you, I really am beginning to like my new parts!! Just wait… I’m sure I will write a post about it 🙂
So yes, more of the waiting game. I am learning to laugh and shrug at these waiting games. I’m trying to learn how to find joy in the journey, or on this “roller coaster” I might say, to find meaning in the ride. More about that here...