Update on Carol, 7/19/16

Posted on July 19, 2016

Carol finished her last round of proton therapy last week, and everything went very well. She did not encounter many side effects besides some chafed skin and a sore windpipe. We are so thankful for this amazing new technology!

We went to the doctor yesterday, and were hoping to hear something concrete, specifically which systemic treatment would be effective and when we would be starting. But the recommendation that our doctor was very different and a lot more difficult for us process. First the good news: CT scans have shown that Carol has no visible signs of disease, meaning that the cancer has not spread – what a huge relief that was to hear! But then, he went on to tell us that he advises that we wait until the cancer progresses further to begin any additional treatment.

This really threw us off. When Carol was last diagnosed, the standard of care was to treat triple negative breast cancer as quickly as possible, with every treatment possible: surgery, multiple forms of chemo and radiation. Because of this, we were always told to start treatment without delay, otherwise the cancer would have more time to spread throughout the body. And what our doctor was telling us this time, to essentially wait until it spread, went against everything we had heard before.

But he explained that there were reasons behind his advice. First, Carol’s body needed more time to recover from proton therapy before starting any kind of treatment, especially chemotherapy. But also, since Carol doesn’t have any visible sign of disease elsewhere in her body, he doesn’t know if there is cancer to even treat, nor would he have any way to measure effectiveness (as in tumors decreasing in size). Chemo is a powerful and dangerous treatment to use when its effects are not clear. Lastly, he wants more time to perform even more advanced tests on the tumor, including sequencing both the DNA and RNA of the tumor itself. Those results might lead to even more specific and effective treatments than chemo, with far less side effects.

This has placed us in a tough spot because we are trying to decide between two uncertain paths. On the one hand, we can see our doctor’s perspective. Carol doesn’t have any visible signs of disease, and so there is a real question of what chemo would be doing – how would we know it’s actually treating anything? How would we measure if it’s effective? Better that we should get additional testing done, wait to see what happens with the disease, and if it does progress, have all the weapons ready to use at that point.

But at the same time, all of our doctors prior to this have painted a very bleak picture in terms of triple negative cancer, that because it is so aggressive, you have to throw the kitchen sink at it, and without delay. Their perspective would be that even if you can’t see sign of disease, you should assume that it’s there, and spreading. And so even with a clear CT scan, they would still prescribe chemo as a sort of pre-emptive, scorched-earth strike against the cancer. And as difficult as that would be physically on Carol, there is a kind of bizarre peace of mind that comes with knowing that you are treating a dangerous disease as aggressively and quickly as possible.

We’ve spent a lot of time talking through these options, and we don’t really know which way to go. Both make sense, both come with real risks. Neither is certain. But at this point, we have to wait for at least a month and a half for Carol to recuperate from radiation. That much is clear, and so that is what we are going to do. Past that, we haven’t made a decision.

I really wish the news was more definitive, not just for us, but for all of you, our friends and family. In fact, that was one of our primary concerns in talking this over: “What about all of our friends? How do we explain this to them? Does this mean they have to walk with us for another year instead of another few months?” We feel badly that we can’t give you more definitive news at this point…

But we’ll do our best to guide your prayers and support: first and foremost, thank God with us that Carol’s cancer is contained at this point and has not spread! Please pray that Carol’s cancer would not progress further, at all, for all time. We still believe in a God who can do that in a second, if it’s His will. Pray for our doctor, that the tests he is going to perform would provide a clear path forward. And pray for Carol and me, that God would grant us his wisdom to know what we should do, when all human wisdom fails.

We are so grateful for you all!

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