The short version of this post is this: further testing still required, which we already have scheduled so that's not what was surprising to us. There. You may be excused.
For those of you who like the nitty gritty of the details, have we got a story for you.
We stayed with friends Sunday night rather than attempt that drive first thing through Monday morning rush hour in the city. No issues there: found the place amidst all the other hospitals in town, got a parking place, got checked in, all no trouble.
We met some of the nurses, one of the main doctor's partners, two of the med students, two nurse practitioners, and the main reason we're there, Dr. A. Everyone was helpful, kind, knowledgeable; I felt like while it's an overwhelmingly big complex that those I interacted with knew what they were doing and who needed to speak with whom and it felt like "well-oiled machine" though not in a bad way. I appreciated that people know what they're doing in part of a much larger whole and can be human and compassionate at the same time.
Apparently I've gone from being medically boring aside from cancer to... less so. As ever, cancer throws quite the learning curve. Part of what we learned yesterday is that some things diagnostically-speaking may be called something specific but it may still involve a lot of gray area. I'd never thought about that before because it was above my pay grade, haha. So when I was informed six years ago that I was "triple positive" I took their word for it. That meant my cancer was estrogen positive, progesterone positive, and HER2 positive. Fine with me- apparently that's the "good" kind to have because with the HER2 positive there's a lot more tools used against it. For example, I had Herceptin and Perjeta infusions through my port for a year and those were hormone drugs to deal with the HER2+. Then I followed that with a year of a drug called Nerlynx- those little blue pills that you need the other little blue pills for. In other words, as your body adjusts to the drug you go through stock in Imodium.
And it worked. (Not just the Imodium, though that's a life saver!) I've been NED which stands for No Evidence of Disease since September 2018 until this lump I found this spring.
The initial thought was that this lump is a lymph node that held onto some yucky stuff all this time. Dr A, who is a breast cancer specialist and geneticist, had me do another ultrasound yesterday so they could further examine this lump because she feels based on the location that it could be a tumor in actual breast tissue versus a lymph node.
You're thinking, "wait, she had a double mastectomy- how does she have any breast tissue left?" Good thinking! However, there's no real "boob stops here" line during surgery; the surgeon scoops as much out as they can whilst preserving your chest wall muscle and muscle around your underarms to preserve your range of motion and all that. I'd imagine it's a fine line to get as much out of there without causing damage to stuff you still need! If we were all paper dolls, it'd be easy to just cut along the dotted line and stop. Long story short, there's some breast tissue left (called auxillary tail, haha) and here's the new wrinkle:
I am now HER2 negative.
Wait, what?! How does THAT happen? We hadn't even heard those results until yesterday; we knew the estrogen and progesterone parts were still very high and therefore positive. So we learned a new thing:
Not ALL of a tumor will necessarily be positive or negative. Sometimes (or maybe even always for all I know) they have some of both, but whoever is examining them will have to make the declaration of it being more one way or the other. Huh. So the HER2+ stuff did get beaten up by all those meds and now we are left with the HER2- stuff if I understand what's going on. Thank goodness Dada takes good notes because I forgot this part twice already; it was indeterminant through the first type of check but confirmed as HER2- on a FISH test. Gotta be honest- I have zero idea what that means and have never heard of it so I'm going with the assumption that it's a kind of tumor mapping test. I haven't Googled that yet. If someone could fill us in, go for it in the comments section.
This could be a really good thing, because it could mean that lymph nodes were not affected and THAT is another whole story.
Grab a snack.
Ahh, lymph nodes. Yet another part of your body that you don't even think about so long as they're doing their job. They're like your spleen, just quietly cleaning up messes and doing their thing. Totally taken for granted. Until...
So there had been a discrepancy six years ago and even though I was there, I'm still not sure if I have all this right. My surgeon said he didn't remove any during the mastectomy, and remember, it's not like they're bright blue and screaming, "I belong here- don't take me!" I'm sure they probably blend in and lay low, haha. My oncologist said they're tiny and he might have and that according to the pathologist that one of three had been cancerous. I think I got that right. That is causing issues in nailing down what's going on right now; were lymph nodes removed and were they cancerous? Dr A feels that based on all the pathology notes that the biopsy showed cancer but no lymph tissue.
The plan as of yesterday is to continue with the back to back MRIs I have next week for the spot on my spine and the spot in my abdominal adrenal(s). For some reason, the PET scan report made it to Dr A but not the imaging, so when we asked to see it she couldn't show us because SHE hadn't seen it. She feels we need to make sure that nothing has spread before moving forward. Fair enough.
If nothing has spread and those two spots are just weirdos trying for attention (they could be inflammation or something because things other than cancer shows up on PET scans. For instance, your brain is always bright on the scan, but areas of high metabolic something or other show up bright so that's why it's easier to spot tumors, inflammation, things like that) then she will schedule surgery to remove the troublemaker in my leftover breast tissue. While she's in there, she's going to try to attempt to do lymph node mapping to make sure they're behaving and weren't affected ("attempt" because it's not usually done post-mastectomy). That means she will inject blue dye and a radioisotope and see what's going on with them. If they're up to no good, out they'll come. I think I got that right. But that opens up potential for lymphedema down the road which is a can of worms I'm not opening today. I don't even want to know anything more other than I don't want it. Again, the comments section is open.
So you guys, now I'm interesting enough that she's taking my case before her tumor board which meets on Thursday evenings. You can't see me, but I'm beaming while holding my imaginary suspenders even as I roll my eyes and laugh at myself. She was saying that what I'm experiencing doesn't usually happen. There was so much information as I sat there in my pink hospital gown I didn't even get to ask "which part?" She also has me set up for a baseline plastic surgery consult* and a physical therapy evaluation already! This lady has got a plan. As I told my brother, "I think she's the kind who isn't afraid to break everything down to make sure it's built back up right!" Again, I'm in really good hands.
Yes, we walked out of there with more questions and our brains felt rather fizzy with information and names to attempt to keep straight (which will be my job- Dada can be in charge of the technical side of things) and now we have what feels like an ever-extending calendar of appointments. I heard someone from church going through some procedures of his own mention, "it's a season" and I thought that was an excellent reminder that I'd completely forgotten. The first time around I was determined that it would just be a season, not a permanent "forever". This time...
A girlfriend asked how I was really doing and I told her that I feel hormonal. I'm a cloudburst of tears one minute, then I'm fine awhile, then I'm so stinkin' MAD that this is all happening again and taking away from my summer and threatening to spill over into fall or further, then I'm fine and can see all the silver linings and then I get scared about that stupid spot on my spine of all places (because breast cancer can and does go into bones) and then I'm fine and then later I'll cry again out of rage and frustration. Grrrr. I know I said the first time around that chemo is so similar to pregnancy in a lot of ways, but man, maybe cancer in general is because I am ALL over the place emotionally. And if a needle is incoming, then just rachet all that up exponentially, haha! Yoi.
I've decided porcupines and hedgehogs are animals who were previously people who had a bunch of needles stuck into them and now they're sticking out instead! Hey, you have a lot of time on your hands while you're laying half naked on an ultrasound table or in an MRI machine. Most of those places don't have stickers or anything interesting to look at on the ceiling so your imagination can be your best friend.
Some of you have asked, "how can I help?" For now, pray that it IS just a single, solitary, easily removable tumor that she can scrape out with no spread so no need for chemo and all that jazz. Thanks for those of you who text/ send cards/ call/ send fun mail/ offer meals/ have us sleep over and all that all of you do. Blue ribbon tribe, no contest!
* I have some thoughts about the plastic surgery consult but I don't want to speak it into the universe before I've talked to anyone official. I don't want to jinx things. We can circle back to that in the future.
