Another Update
It's been nearly a year since I started this thread, and more than six months since my last update. When last I posted, I was staying with my mom, in the middle of chemotherapy with reconstructive surgery scheduled this past Monday, and wrestling with whether to tell my boss I wasn't planning to return to work after treatment. I'm still living in the spare room but that's about all that is the same.
The six months of chemotherapy ended in January. I had an appointment with my oncologist the day after Christmas, at which he said I didn't really need to do the last few weeks of the series, but I decided I wanted to finish the treatment plan as originally suggested, and did, all but the final IV infusion. By the last three weeks or so, I was feeling really lousy--too tired to do anything but lie in bed all day. I had been told the side effects of the CMF included cumulative fatigue, so I assumed this was just more of the same, but in fact, I had developed a rather bad case of pneumonitis (the same thing as pneumonia but caused by inflammation rather than an infectious organism). As far as could be determined, I'd just had as much as I could stand of one or more of the chemo drugs. The pneumonitis put me in the hospital for a week, which, along with stopping the chemo meds and a month on steroids + antibiotics, dealt with the lung problem. In the meantime, about five months in to the chemo regimen, I had developed a tender area on the same side as the surgery, and later could feel some lumpiness in the skin. The area was scanned with ultrasound, and although there was nothing to be concerned about in the tender/lumpy area, the ultrasound also located some spots in my liver, but couldn't definitively identify them. After two more scans, both inconclusive, and a biopsy, they were diagnosed as metastases from the original tumor. I suspect those liver mets were there from the start--they just weren't discovered until the ultrasound because they weren't, and still aren't, causing any symptoms. So, now I'm stage IV.
After chemo, I started taking anastrozole, which quells production of an enzyme used by the body in estrogen production, and since my cancer feeds on estrogen, this should keep it in check. When the biopsy results came, my oncologist ordered a PET scan for me. This was originally denied, but he appealed the decision. On the third review, the scan was approved and will be done tomorrow. I have a CT scan scheduled for next week, which, compared to the CT I had in January will reveal how the anastrozole is affecting the liver growths. I had a chest CT when I was in the hospital, and I assume if I also had metastases to the lungs, they would have showed up on that, and also a bone scan, which was clear. So, as far as I know at this point, my liver is the only organ the cancer has spread to, and there only to the two spots there. If that result holds up after the PET, I will find myself in a category of patients which is somewhat controversial. The majority/conventional view among oncologists and researchers is that once metastasis has occurred, it's no longer possible to "cure" the cancer; it can only be "treated" to prolong life and reduce symptoms. Hence the denial of the PET scan the first time around: the logic is that at stage IV, the recommended treatment would not change whatever the results of the scan, so it isn't covered. ISTM this view sets up a self-fulfilling prophecy situation: at stage IV the treatment is not aimed at curing the patients, so they aren't cured, thus "treatment results show" that cure isn't possible at stage IV. Recently, however, dissent has arisen about this view, and some oncologists think that a cure (to the limited extent that any cancer can be cured) may still be possible for patients with a small number of metastases, in one organ only, called oligometastasis. When the liver growths were first identified as cancer, my oncologist mentioned that it might be possible to remove them surgically. For me, that possibility has great appeal. A cancer can be treated with drugs until it's no longer visible on scans, but when it has been physically removed, it's really GONE, or so it seems to me. My younger brother has colon cancer and also had metastases to the liver. These were removed surgically (this is a more accepted part of treatment with colon cancer than with breast cancer) and the cancer has never come back at that location. Unfortunately he has also had recurrences in other organs, but even so he has lived more than four times as long as the median life expectancy for someone with his diagnosis, and I can't help but think the liver surgery contributed to that. Having these things in my body makes me feel like the hostage forced by terrorists to wear a vest filled with explosives--I want it off me before it blows up!! If the PET scan shows no other areas of spread/affected organs, I'll investigate my options for treatment aimed at getting to NED (No Evidence of Disease) and staying there for a long time, but if other organs are involved, that's no longer a viable option, but at least I will know, one way or the other. I also have a consultation scheduled later this month with Seattle Cancer Care Alliance, a nationally known treatment/research center. Reconstructive surgery is postponed indefinitely. I did leave what would have been my pre-surgical appointment in the calendar so I could talk to the plastic surgeon again about what (if any) reconstruction options remain after metastatis. I was rather surprised to learn that there aren't any restrictions on reconstructive surgery specific to patients at stage IV, but for now, for me, reconstruction is off, and if I have liver surgery, it's probably off permanently.
Even if I am oligometastatic, there's no guarantee that treatment which aims at getting me to NED will be successful. I think probably everyone who gets to this point in cancer treatment hopes for long-term remission with good quality of life, but not many actually get it. And if the cancer has spread to other organs in addition to my liver, the outlook is pretty bleak. In that case, I'll be beating the median if I'm still around to take early SS at age 62. Sometimes the whole thing seems just surreal. How can I have an illness which will almost certainly reduce my lifespan by years, if not decades, when I feel so normal? At Christmas I felt rotten but still expected I might live to be 100; now I feel great but don't expect ever to see 70. My coping strategy at the moment is to try to focus on something else most of the time. So I have been getting estimates for the repairs on my house (although given altered expectations I am leaning toward having all the work done now rather than my original plan of waiting until SS eligibility provides extra income for that purpose), thinking about what to do with the nice big yard, and anticipating my retirement. But I only have another few hours of anticipation, because today is my last day on the City payroll. As of tomorrow, I'm retired.
