Friday 5/29/20 - a twist
May 15th was both the day I discovered I had a tumor (in 2017) and the day I finished treatment (in 2018), so I commemorate this day now with a made-up holiday--Uncertainty Day--to recognize and share the present uncertainties in our lives.
It has now been over two years since the end of treatment and I just got back another set of scans: still clear! As if in celebration of Uncertainty Day, though, I also learned something very unexpected... They've changed my diagnosis.
The doctors at OSU obtained samples of the tumor from John's Hopkins and did their own genetic testing. Rather than chondroblastic osteosarcoma, they believe I had a chondrosarcoma, a primarily cartilage-creating bone cancer. In particular, they believe my cancer was a highly aggressive variant called dedifferentiated chondrosarcoma.
What does this mean?
For one, this likely explains why so little of the tumor was dead following the initial rounds of chemotherapy (low "necrosis")-- and brings up the unpleasant question of whether the chemo I had (and the associated hearing loss, long-term heart risks, etc.) was actually necessary or helpful for my particular cancer at all. My current oncologist said they may have done chemotherapy anyway, but that we're "hanging our hat" on the surgery, i.e., the only clearly effective intervention for dedifferentiated chondrosarcoma is cutting it out.
Most importantly, though, what does this mean for the likelihood of recurrence? Basically, the answer is we don't know. The thing about this diagnosis is that it's extremely rare: it represents only ~2% of bone cancers, which itself is rare among cancers overall. I lamented the lack of data on osteosarcoma, but with dedifferentiated chondrosarcoma, it's a whole new level of uncertainty. There is some scary information online, like "people rarely survive longer than two years," but there's way too little data to account for any of the protective factors like the fact that I'm decades younger than most patients with this diagnosis. In addition, being now two years out from treatment (and 2.5 from surgery) is of course a good start. After researching this more, my dad says "I'm almost glad we didn't get that diagnosis initially." Indeed, I imagine it would have been much scarier had we known then.
In short, though, my expectations now aren't worse per se; I'm just less confident what to expect in either direction. In other (nerdier) words, the confidence intervals are wider. For the sake of follow-up scans, though, we will estimate roughly the same level of risk and keep the same schedule of testing: currently at 4-month intervals and, if all goes well, next year at 6-month intervals.
Ah Uncertainty, you're never far...
------
All the more reason, I suppose, to be grateful 💗
And indeed, life goes on... I have at last finished my PhD and, in another surreal twist (in this case a very positive one)--this summer, Francis and I are moving to Washington Grove!!
Here's our home... if all goes as planned, but of course you never know...
------
In parting, I'll share a short story I love on the theme of uncertainty:
What does this mean?
For one, this likely explains why so little of the tumor was dead following the initial rounds of chemotherapy (low "necrosis")-- and brings up the unpleasant question of whether the chemo I had (and the associated hearing loss, long-term heart risks, etc.) was actually necessary or helpful for my particular cancer at all. My current oncologist said they may have done chemotherapy anyway, but that we're "hanging our hat" on the surgery, i.e., the only clearly effective intervention for dedifferentiated chondrosarcoma is cutting it out.
Most importantly, though, what does this mean for the likelihood of recurrence? Basically, the answer is we don't know. The thing about this diagnosis is that it's extremely rare: it represents only ~2% of bone cancers, which itself is rare among cancers overall. I lamented the lack of data on osteosarcoma, but with dedifferentiated chondrosarcoma, it's a whole new level of uncertainty. There is some scary information online, like "people rarely survive longer than two years," but there's way too little data to account for any of the protective factors like the fact that I'm decades younger than most patients with this diagnosis. In addition, being now two years out from treatment (and 2.5 from surgery) is of course a good start. After researching this more, my dad says "I'm almost glad we didn't get that diagnosis initially." Indeed, I imagine it would have been much scarier had we known then.
In short, though, my expectations now aren't worse per se; I'm just less confident what to expect in either direction. In other (nerdier) words, the confidence intervals are wider. For the sake of follow-up scans, though, we will estimate roughly the same level of risk and keep the same schedule of testing: currently at 4-month intervals and, if all goes well, next year at 6-month intervals.
Ah Uncertainty, you're never far...
------
All the more reason, I suppose, to be grateful 💗
And indeed, life goes on... I have at last finished my PhD and, in another surreal twist (in this case a very positive one)--this summer, Francis and I are moving to Washington Grove!!
Here's our home... if all goes as planned, but of course you never know...
------
In parting, I'll share a short story I love on the theme of uncertainty:
One day a farmer's horse ran away. Upon hearing the news, his neighbors came to visit. "Such bad luck," they said sympathetically.
"May be," the farmer replied.
The next morning the horse returned, bringing with it three other wild horses. "How wonderful," the neighbors exclaimed.
"May be," replied the old man.
The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.
"May be," answered the farmer.
The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.
"May be," said the farmer.
And it goes on like this. I think there are many versions of this story, but that's the concept, which is all you need--a beautiful reminder of the complexity of any major change, and how good and bad inevitably coexist. Perhaps a fitting reminder for us all through the uncertainty of our ongoing global pandemic.
Well, congratulations on the house! Well, assuming it all goes through, it sounds like you have made it through all the conditions. Big congratulations on the PhD! I don't understand the medical diagnostic implications, and understand still less why this is a firmer diagnosis than the last, but I accept that's how diagnosis can be.
ReplyDeleteThanks Susan!!
DeleteWe have more certainty in the diagnosis now because we had never had genetic testing of the tumor before. As far as its implications, though, I'm sure there's still a lot I don't understand either. I'll share here if/when I learn more!
Warm wishes to your and your kids <3