The Future has been Cancelled

 

We attended our first (and last) IUBB game since 2020 last night. We are going to attend one IUWBB game next week. After that, things are moving very quickly and I will essentially be in lockdown until spring or summer.

Because I finally got to have my ECHO and got the results, Dr. Liu’s scheduling nurse agreed to put me on the list for my port placement, which will be 1/18.  

I had requested the risk differential between the 8 AC/T chemo regimen and the 4 TC regimen, but there are no “direct studies”, so the oncologists were unable/unwilling to provide an estimate. So, I did a bunch of research on my own. While doing that research, I came across information in a study that said, “Most patients receive chemotherapy 6-8 weeks after surgery. A wait of longer than 3 months is detrimental.”

 I did not love the word “detrimental”.., 

The delay in the original EKG results being found, the mammaprint results getting lost, the ECHO getting rescheduled, the holidays… all of this pushed my port placement date to 11 weeks and 6 days after surgery. I asked oncology if it’s true that waiting 3 months is “detrimental”, and they said that patients have delays for all sorts of reasons, but added that they are really going to push to start my chemo on the 19th or 20th, so… it seems like it also might not NOT be true. 😬 So chemo will be starting very soon after my port is placed, which is probably going to make it more painful, but it is what it is.

Anyway, all of that, plus my own research finally led to a chemo decision. While it’s true that there is not a direct study comparing the AC/T to the TC, there have been studies that have taken all of the available data about recurrence rates, overall survival, and significant adverse events of each type and then compared those to each other. The AC/T chemo seems to be around 2% “more effective” than the TC. 2% isn’t much, but “detrimental” still lurks in my mind, and 2% is *something*. In terms of significant adverse events, the heart toxicity risk is greater with the AC/T, however, the toxicity is a cumulative issue, and much more of a concern for elderly people or those with heart problems (which we have determined that I don’t have). The biggest adverse event risk with TC is related to neutropenia. While that is a risk with ALL chemo, it seems to lead to more frequent hospitalizations with TC. Neutropenia has to do with dangerously low white blood cell counts. TC also has a risk of permanent hair loss. So, with all of this information I decided to bite the bullet and do the longer regimen. 

Ultimately, any number of things can go horribly wrong with any chemo regimen, but if something goes wrong with the AC/T I will have additional options I can try. That did not seem to be as true for TC.

I saw my plastic surgeon Wednesday. He agrees that I don’t need any more fills, and he doesn’t need to see me again until after chemo! He is extremely pleased with the results, so far, and said he wishes all of his patients followed instructions so well and healed so perfectly. He desperately hopes that I won’t have to have radiation to any of the breast area (as does my physical therapist, and as do I). I definitely have to have it to the armpit, but that’s the only concrete info I have for now. My plastic surgeon is concerned it will  cause a lot of damage to all of his good work, and he said I’m one of his favorite reconstructions! My PT is concerned about scarring and damage to the underlying fascia/muscles. So, let’s all hope that I’m doing enough other stuff that the radiation will only be needed in the axillary lymph nodes!! 🤞

I also saw a new PT this week. She is a lymphedema specialist. She was also pleased with my range of motion and overall recovery, and as of now there are no lymphedema concerns. I really wasn’t worried about it, because I didn’t have that many lymph nodes removed, but she definitely managed to scare the bejeezus out of me with all of the things that could cause it and all of the ways I need to be careful. I also didn’t realize that the risk is there forever. Like, 20 years from now I could get bitten by a mosquito or get a sunburn or pick at a hangnail and BOOM, swollen arm forever! WTF??! But, while I will probably worry about it after radiation, if nothing happens then I’ll probably forget about it again. I have plenty of things to worry about, but frankly I had no idea there were so many rules about my arms. I’ve already had insect bites and cuts and hangnails since surgery (and immunizations!!) and no lymphedema. So, maybe I’m not going to worry about this too unless I have an actual reason to.

So yeah, I have about 10 days left to get things in order, and one last event to attend, and then all non-medical things involving outside humans are cancelled until further notice!