Thursday, March 4, 2021

Update March 4, 2021

 

On Tuesday afternoon, we got the histopathology report on Amanda's tumor back from the lab. The surgeon, Dr. A, handed it to us and didn't explain anything. I don't remember if i posted the results of her surgery before, but the one thing she had really been hoping for was that she would get to keep most of her lymph nodes. After surgery we were told they had taken all of them. She was upset by this, wondered if it was necessary, wished it hadn't happened, of course.
 
The lab report revealed that of 26 lymph nodes tested, 21 were still positive for cancer.

That's a huge number, obviously. That's all of the sentinel lymph nodes and 3/4 of the axillary ones.
Furthermore, at diagnosis, she had one 35mm lump in her breast. What they ended up extracting in surgery was one 75mm invasive ductal carcinoma, plus an additional 70mm ductal carcinoma in situ (a pre-cancerous tumor). Her margins were clean but there are a lot of other little things in that lab report that sound nasty or discouraging.
 
She wasn't scheduled to see her oncologist for another week, but as we walked out of the surgeon's office, she called them immediately and was fortunately able to move the oncologist appointment up to yesterday morning, so she could explain the lab report to us.
 
The main takeaway here is that the chemo was not effective. It may have helped contain the cancer a little but it certainly did not kill the tumor, like it was supposed to. She felt like the tumor was shrinking during chemo, but during the four-month wait between the end of chemo and surgery, she started to complain that it was hurting again and felt bigger again. The doctors brushed this off as normal. They still can't tell us definitively if the longer wait contributed to these complications, but what is certain is that if the chemo had done its job, that tumor should have been dead and inactive regardless. Given all of the information we have currently, she would be considered Stage 3 now, up from Stage 2 at diagnosis.
 
The biggest concern right now is that cancer most easily spreads through the lymph system, so the number of infected lymph nodes is not a good sign. It's more encouraging that not all of them tested positive though, so it's possible the lymph nodes did their job and prevented it from getting any further.
They've ordered a new PET scan to find out for sure if it's been contained to the breast and the removed lymph nodes. We are still waiting for insurance to approve the PET scan so we can get it scheduled but we certainly hope that happens soon. If we don't hear anything today, Amanda's going to call them tomorrow morning and check in on it, and probably every day after that until they get their shit together and authorize the damn thing.
 
Setting the PET scan aside for the moment, this report still changes the way we're approaching her treatment going forward. She was originally expecting to get radiation after healing from surgery. Once they took the lymph nodes out, it was suggested she might not need radiation; now it has become definite that she will. The oncologist is optimistic that radiation will take care of any lingering cancer in her body. However, they have decided to be more aggressive with her hormone treatments. She was already expecting to be on hormone treatments for the next 5-10 years, but the stuff they were going to give her is not the strongest stuff available. However, to get stronger hormone treatments, she needs to be in menopause. They are going to be giving her regular injections to trigger an artificial menopause, which she will continue to receive until she goes into natural menopause. Given how young she is, that might be quite a while. But it will allow them to hit her with the most effective treatment they have.
 
This is all assuming that the PET scan comes back negative. If we find that the cancer has spread to other organs...that's a terminal diagnosis. Stage 4. At that point, further treatment switches from aggressively combating cancer to just making her comfortable and trying to prolong her life. We're trying not to think about that right now but it's a possibility that looms heavy over us.
 
By this point it should go without saying that we're scared. From where we started, this should have been an easily treatable, routine breast cancer case. And somehow it has become this fucking mess. In hindsight, yeah, we probably should have done surgery first and chemo after, which was what the oncologist recommended in the first place but the surgeon talked us into doing chemo first; if the chemo had been effective, he would have been right, and would have saved all but one of her lymph nodes. We had no way of knowing the chemo wouldn't work. It's useless to second guess the past at this point, so we're just focusing on moving forward. But yeah, we're scared.
 
There's still a couple things working in her favor, at least. The lab report shows that the cancer is still receptive to the hormone treatments, and her HER-2/neu status is still negative, which is good; those are the bright spots we're clinging to. Given everything in the lab report, the oncologist thinks there's about a 30-40% chance the cancer has spread. So the odds are still in her favor, but that margin is shrinking.
 
On top of that, we learned late last night that a friend and former coworker of hers died by suicide this week. That's been difficult for her to process, on top of the shock from everything else.
 
I don't have a good way to wrap this up. 
 
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UPDATE March 5, 2021 3:32 pm pdt
 
The PET scan is approved. We can call back in one hour to get it scheduled.
 
UPDATE March 5, 2021 4:28 pm pdt
 
Wednesday, 3:30 pm 

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