It’s not cancer…

The past month of my life has been one of the crazier times I can recall. I reported about a month ago that a new spot appeared on my ribs in my routine PET scan. I initially spoke with the nurse practioner about this and she indicated (very empathetically, of course), that this wasn’t really a big deal. A bump in the road, yes; but all things considered, this was near best case scenario for me. I then followed up with my oncologist who basically said the same thing. We looked at the images together, indeed there was a very bright spot that was presumed to be cancerous given my history. Because a new spot of metastasis indicates my current medication regimen is losing effectiveness, I discussed a few different treatment options with my oncologist. One being changing my hormone therapy and changing my targeted therapy to one that had significantly more side effects; another being radiating the area of ribs (this wasn’t really recommended unless I had extreme pain because it wouldn’t really stop the other micro-metastases that were presumed to be happening due to this spot showing up); and finally a clinical trial where I would be given a different hormone therapy and then either given a drug in the same class as my current targeted therapy or given placebo. The point of the clinical trial was to determine whether it made sense to continue with a targeted drug in the same class as my current targeted drug, even though the cancer was starting to prove resistant to my current regimen.

It turns out the spot isn’t cancer and we don’t really know what it is or why it showed up on the PET scan. If you are pressed for time, that’s all you really need to know and can just stop reading right now because the story as to how and why this happened is long and confusing.

This is all really long and confusing, but take-home points: after multiple scans and a biopsy, I was diagnosed with metastatic breast cancer 2 1/2 years ago due to a metastatic spot in my manibrium. Once you are declared metastatic, it is assumed that the cancer will spread at some point, thus the reasons for routine scans. I have difficultly explaining this to people. While cancer can be cured in the early stages, once it has left the primary organ, it is considered to have penetrated the whole body and it’s only a matter of time before it shows up elsewhere. So, while my original metastatic spot in the manibrium was a surprise and we needed to follow-up with a biopsy because at that point I was considered cured from Stage 2 cancer; additional metastatic spots in a stage 4 patient do not warrant the same type of invasive investigations. Second point: although news of the cancer popping up again was upsetting considering I had gone so long without anything, this was completely expected in the world of cancer and a slight modification of my treatment was not earth-shattering, again because it seemed to be still confined to the bones meant my prognosis was still favorable. Third point: I basically had 2 options at this point, start a slightly harsher medication or go on a clinical trial. I chose the clinical trial. Had I not chosen the clinical trial, this whole post would be about 2 sentences…assume cancer spread, started new medication, will follow-up with scan in 3-6 months.

I had to do a number of things to make sure I qualified for the clinical trial. Initially I had to get labs, have an EKG done (because one of the study medications has a rare side effect of causing life-threatening heart rhythm disturbances…this is pretty common with a lot of medications, they just need to make sure you are not predisposed to heart issues), and get a baseline CT scan. I did all that and then followed up with my oncologist a few days later. My oncologist informed me that we had run into a few road bumps with the results of these tests. One, my heart rate was apparently too low for the study. It was in the 40s and needed to be above 50 on an EKG per the study parameters. So, I need to repeat the EKG. My heart rate is generally low because I’m a runner, but it’s usually over 50, so we thought this was a fluke and repeating an EKG wasn’t really a big deal. I also needed more investigation of my heart because my heart rate was so low, so the cardiologist signing off on the study wanted to see an ECHO, or ultrasound of my heart, to prove that my heart was okay. I guess scheduling the ECHO was more complicated than the EKG and couldn’t be done for 9 more days. In the clinical trial world, this put my previous PET scan out of the time-frame specified for base-line scans, so this led to a need for a follow-up bone scan to take the place of my now-outdated PET scan….confused yet? The other issue that had come up was that my CT scan indicated the spot on my ribs looked more like infection or inflammation than cancer. This was a surprise since the PET scan looked very much like cancer and in the words of my oncologist…”I don’t know how you could have an infection there…but I guess we could biopsy the area”. Essentially it was up to me. A biopsy is a big deal. There is a reason they don’t go around biopsying every new area that shows up on a scan in a stage 4 patient. I decided to go ahead with the biopsy, because as sure as my oncologist seemed to be, I felt something was off about this whole thing.

Oddly enough, in the early stages of my rib pain, which started to present about 2-3 weeks before my scan, the possibility of an infection or some type of complication with my breast implant crossed my mind. I kind of ruled this out, however, when I didn’t seem to be displaying any of the classic signs of infection, specifically my temperature and white count were normal. A week or two before my PET scan, the fear and uncertainty of this being cancer started to creep in (see Scan Results August 2020) and when I was told it looked like cancer, I figured that was the most logical explanation. I had a couple weeks of “down time” between the scan and starting the screening process for the clinical trial and noticed that the pain started shifting from a more interior rib pain to a more superficial pain. I also started developing something that kind of looked like cellulitis in the area, it started to look inflamed. It was almost like the spot had moved, which seemed odd if nothing else.

The other issue happening in my life was I had reached a breaking point with working full-time, having metastatic breast cancer, and now starting to work through virtual schooling with my kids. This report of a new spot of cancer (even though, again, it was really not a big deal) basically sent me over the edge and I started the process of quitting my job (or at least drastically reducing my hours). My job is pretty specialized, so quitting my full-time position isn’t an overnight process…it will take months of hiring and training a replacement. My job is important to me. I am very aware of the severe emotional and psychological fall-out that can happen by quitting. Everyone is different, but for me I equate quitting my job with losing a key piece of self-worth that is giving me the fortitude and strength to keep going through this breast cancer journey. I’m not saying it’s right to use your job as this much of a crutch to your self-worth and certainly I have the confidence that I can and will find other ways to use my time, but I am very aware that this can be an issue for me. Although I had started the process of decreasing my workload, I put everything on pause when things started to feel abnormal. That was a difficult and uncomfortable position for me to be in and also for me to put my co-workers in. There are three main pharmacists at my pharmacy and we’ve all kind of been in limbo for the past six weeks.

I have spent almost 20 hours at the hospital in the past three weeks. Obviously to say this is the last thing I needed when I was trying to balance a full-time work schedule with starting my kids virtual schooling is an understatement. I have officially been driven bat-shit crazy with all of these appointments and the uncertainty of my life. Two times I have been left waiting over an hour for an appointment at the hospital. Same department, one time the camera was down and another they “fake checked me in” (literally, found me in the system, gave me the buzzer, then didn’t tell anyone I was there). At the moment I don’t want to step a foot inside a hospital, but thanks to this misadventure, at the moment I don’t have to. Aside from some planned follow up with my oncologist in a few weeks and pending any interest from the other departments she contacted about my case (orthopedics, rheumatology), the next steps seem to be up to me. My plan is to keep an eye on things and take one day at a time, but for the moment I can do something I haven’t been able to do for a month, just breathe.