Once again, I was struck by how interesting that the heads of my cancer treatment team have some key similarities to my parents. Dr. F (surgeon) reminds me so much of my mother in her To The Point attitude. She is efficient in her words and movement. But make no mistake, not only is she very good at what she does, she also cares a great deal. Like my mother, she's a "here's the problem… let's fix it rather than discussing it to death." (Not that she won't answer questions.) There's room to be sad or scared, but let's not stay there too long as it is counter productive. She cracks me up like Mom does.
Dr. R (oncologist), is much like my father. Patiently explains things in detail plus watches every movement and tone of voice to understand how I might be feeling. Also similar to my father, he is gentle and sweet but very wise. And he's a hugger, too. Being around him produces that same "everything is going to be ok" feeling.
However, despite these differences, I trust both completely and actually appreciate having both approaches. It brings a balance to my world that feels "right", just like my mom and dad.
Speaking of my doctors, part of the appointment was to discuss the results from the tissue removed. The pathology report itself was a mixed bag. There were some disappointing, reassuring and confusing results. Here's the breakdown as I understand it:
Bad:
The cancer in my breast and nodes either grew back or that PET scan in November that showed "No Evidence of Disease (NED)" wasn't accurate. The breast cancer surgeon believes it is the latter. As my oncologist had prepared me from the start that the post mastectomy pathology report might show cancer cells because it is hard for a PET to see under that thickening of skin, I'm inclined to believe this is what happened too.
Good:
It had though, shrunk considerably in my breast and she got it all. Report noted that there was no cancer on the outer edges of the tissue removed so that means it is likely that no additional surgery is needed in that area.
Bad:
Out of the 12 nodes she removed, all 12 were positive for cancer. This is what has my surgeon and oncologist concerned. One of the jobs of the nodes is to be a filter of sorts. Once the Mothership started sending out "scouts", they have to pass through the nodes. If only 1-2 nodes show up positive, there's a chance that no or just a few of those "scouts"made it out. But all 12 mean she was bombarding and possible that a lot of them are now loose in my system… and may set up "tumor camp" in a vital organ. No way to know for sure at this point if any have landed or when they might land.
Good:
I belong to an online IBC support group and when I shared my report, I had many explain they got similar news with the nodes but radiation did an awesome clean up job and they went on to that coveted status of NED. I will be starting radiation in 2-3 weeks.
Possibly Bad:
My cancer may have mutated from being the kind that feeds on hormones to one that doesn't. Also possible that it mutated to a more aggressive type called HER2 positive. These mutations, I have come to find out are common with IBC. More testing required. If indeed it happened, it is more difficult to treat but not impossible. It leaves up in the air exactly which targeted drug treatment I will be doing now.
Bottom line Good:
Both my doctors are such dedicated ones who don't put ego above their patient's wellbeing. IBC is rare, so they only saw 1-2 cases last year and are concerned there may be treatment options that they simply don't know about trying. So they are going to present my case on Tuesday to a board of doctors to get their input.
She also wants me to go ahead and see an IBC specialists… and it turns out the one that is closest to me (Philadelphia) is one of the very best. Instead of only seeing 1-2 patients per year, that's all he treats. A few of the women in my online and one in my local support group have been treated by him and have only great things to say. I will have to undergo many of the same tests again as he doesn't want to miss something due to a typo or a mistake on technician's part. Goal is to get in after drains are removed and before radiation starts. Will know on Tuesday how likely that will be.
I wonder if this new doctor will be like my mom or dad… or maybe a favorite aunt or uncle? Or grandparent? He won't be replacing my team, just providing more treatment options that my local doctors will implement.
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