Wait, There's More
Fair warning: this is a long and somewhat complicated post.
Five years ago, when I was first diagnosed with breast cancer, Zach and I had just one concern: that I live as long and in as good health as possible. That meant treating the disease as aggressively as we could in the hopes of achieving remission and preventing a recurrence. Everything else was secondary.
When we agreed to chemotherapy (standard treatment for someone in my situation), we were told about all of the various side effects. We knew that I would lose my hair, that my immune system would be temporarily compromised, and that I might have some transitory side effects—a bad taste in my mouth, joint pain, tingling in my hands and feet, and other annoyances.
We also knew that the chemo would affect my ovaries in two possible ways. First, it would disrupt my ovarian function, pushing me into premature menopause. But because I was so young (34), and therefore fairly far away from natural menopause, chances were pretty good that this would be only temporary. Second, the chemo might do long-term damage to my ovaries and thus cause infertility problems later on.
Again, at the time, these concerns were secondary. While Zach and I had always planned to have a family, at that point it was something we were going to do in the future. And all we cared about five years ago was making sure that there would be a future.
In theory, we could have tried to hedge our bets by harvesting some of my eggs before I started chemo, but delaying the treatment was a risky proposition—if there were any rogue cancer cells floating around in my body, we did not want to give them a chance to find a new place to set up shop.
And there were other considerations. By then, we knew that my tumor's growth had been fueled in part by hormones, including estrogen. That had two implications. First, several of my doctors felt that it would be too risky for me to ever carry a child because estrogen levels skyrocket during pregnancy. One of my doctors likened it to "laying a banquet" for the cancer to return. Second, harvesting eggs involved hormones, too—they would be used to stimulate egg production so that multiple eggs could be retrieved at once. This was less dangerous but still a risk.
In any event, it would be at least three years—and up to six—before I could even try to get pregnant. First I'd have nearly a year of treatment. Most oncologists recommend waiting at least two years after the end of treatment before trying to conceive because those two years are the most likely timeframe for a recurrence. And in my case, I was going to be on an estrogen-suppressing drug called Tamoxifen for five years after my treatment. Because Tamoxifen would be harmful to a fetus, I'd have to wait until it was out of my system before trying to conceive. While it would be possible to go off the Tamoxifen after two years in order to try to get pregnant, that again seemed risky to us. Studies had compared the efficacy of Tamoxifen at one-, two-, five-, and 10-year intervals, and five was the magic number. Why wouldn't I stay on it for the full five years in order to get the maximum benefit? Of course, by the time I finished the Tamoxifen, I'd be 40, and that in itself raised fertility issues.
Knowing all of that, we pressed ahead with the chemo. And while I did get a sneak peek at menopause (including its finest features, hot flashes and night sweats), it only lasted about eight months. I started the Tamoxifen on my 35th birthday (another reason why I was looking forward to number 40), and we were biding our time before revisiting the whole issue.
And then I was re-diagnosed.
So now we are facing some of the same decisions we faced five years ago, but with some significant differences. First of all, I'm about to have chemo again, which means that the chances of my ovaries emerging unscathed (if they're not scathed already) are rather slim. Second, in the past five years there has emerged a new class of drugs—aromatase inhibitors—that are more effective than Tamoxifen at blocking estrogen and preventing recurrence. So once I finish chemo this time, I will start taking one of those drugs for a five-year period. Here's the catch: those drugs are not able to block estrogen produced by the ovaries, so they only work in post-menopausal women. So in order for one of those drugs to be effective in my case, I will either have to have my ovaries removed surgically (an oophorectomy) or have them shut down chemically by getting a shot once a month for five years. In the first case, I will definitely be infertile right away (no ovaries = no fertility). In the second, there is a high probability that I will be infertile at the end of the five-year period—I'll be 45, and I will have had chemo twice.
But here's the other significant difference from five years ago: there have been developments in reproductive medicine that make it possible to stimulate egg production using the very same estrogen-suppressing aromatase inhibitors that I will be treated with following the chemo. This means that there is now a relatively safe way for us to harvest my eggs, fertilize them, and freeze the resulting embryos before I start chemo again—a slight variation on in vitro fertilization (IVF).
Of course, there is no getting around the fact that I'm 39 and have already had chemo once, which means that this whole thing is even more of long shot than usual. And unlike other couples who can try IVF multiple times (resources permitting), we pretty much have one shot before I have to start treatment—to try a second (or third or fourth) time would mean an unacceptably risky delay.
If anything, we are now more convinced than ever that it would be too risky for me to try to carry a child. And that means—if the IVF goes well and we have some promising embryos to freeze—we will be looking to a surrogate. And that's a whole other minefield that we are not going to try to navigate just yet.
For now, we are just focusing on the IVF piece. We've found a great doctor—one who is doing pioneering research on fertility preservation in breast-cancer patients—and have had the initial consultation, tests, and blood work. (My right arm has improved enough that his phlebotomist was able to get 10 vials of blood with just one stick on Friday. She is my newest hero.) Again, we have a small window to work with, so things will be happening quickly from here on out.
We'll let you know how it goes in future (and shorter) posts.
Five years ago, when I was first diagnosed with breast cancer, Zach and I had just one concern: that I live as long and in as good health as possible. That meant treating the disease as aggressively as we could in the hopes of achieving remission and preventing a recurrence. Everything else was secondary.
When we agreed to chemotherapy (standard treatment for someone in my situation), we were told about all of the various side effects. We knew that I would lose my hair, that my immune system would be temporarily compromised, and that I might have some transitory side effects—a bad taste in my mouth, joint pain, tingling in my hands and feet, and other annoyances.
We also knew that the chemo would affect my ovaries in two possible ways. First, it would disrupt my ovarian function, pushing me into premature menopause. But because I was so young (34), and therefore fairly far away from natural menopause, chances were pretty good that this would be only temporary. Second, the chemo might do long-term damage to my ovaries and thus cause infertility problems later on.
Again, at the time, these concerns were secondary. While Zach and I had always planned to have a family, at that point it was something we were going to do in the future. And all we cared about five years ago was making sure that there would be a future.
In theory, we could have tried to hedge our bets by harvesting some of my eggs before I started chemo, but delaying the treatment was a risky proposition—if there were any rogue cancer cells floating around in my body, we did not want to give them a chance to find a new place to set up shop.
And there were other considerations. By then, we knew that my tumor's growth had been fueled in part by hormones, including estrogen. That had two implications. First, several of my doctors felt that it would be too risky for me to ever carry a child because estrogen levels skyrocket during pregnancy. One of my doctors likened it to "laying a banquet" for the cancer to return. Second, harvesting eggs involved hormones, too—they would be used to stimulate egg production so that multiple eggs could be retrieved at once. This was less dangerous but still a risk.
In any event, it would be at least three years—and up to six—before I could even try to get pregnant. First I'd have nearly a year of treatment. Most oncologists recommend waiting at least two years after the end of treatment before trying to conceive because those two years are the most likely timeframe for a recurrence. And in my case, I was going to be on an estrogen-suppressing drug called Tamoxifen for five years after my treatment. Because Tamoxifen would be harmful to a fetus, I'd have to wait until it was out of my system before trying to conceive. While it would be possible to go off the Tamoxifen after two years in order to try to get pregnant, that again seemed risky to us. Studies had compared the efficacy of Tamoxifen at one-, two-, five-, and 10-year intervals, and five was the magic number. Why wouldn't I stay on it for the full five years in order to get the maximum benefit? Of course, by the time I finished the Tamoxifen, I'd be 40, and that in itself raised fertility issues.
Knowing all of that, we pressed ahead with the chemo. And while I did get a sneak peek at menopause (including its finest features, hot flashes and night sweats), it only lasted about eight months. I started the Tamoxifen on my 35th birthday (another reason why I was looking forward to number 40), and we were biding our time before revisiting the whole issue.
And then I was re-diagnosed.
So now we are facing some of the same decisions we faced five years ago, but with some significant differences. First of all, I'm about to have chemo again, which means that the chances of my ovaries emerging unscathed (if they're not scathed already) are rather slim. Second, in the past five years there has emerged a new class of drugs—aromatase inhibitors—that are more effective than Tamoxifen at blocking estrogen and preventing recurrence. So once I finish chemo this time, I will start taking one of those drugs for a five-year period. Here's the catch: those drugs are not able to block estrogen produced by the ovaries, so they only work in post-menopausal women. So in order for one of those drugs to be effective in my case, I will either have to have my ovaries removed surgically (an oophorectomy) or have them shut down chemically by getting a shot once a month for five years. In the first case, I will definitely be infertile right away (no ovaries = no fertility). In the second, there is a high probability that I will be infertile at the end of the five-year period—I'll be 45, and I will have had chemo twice.
But here's the other significant difference from five years ago: there have been developments in reproductive medicine that make it possible to stimulate egg production using the very same estrogen-suppressing aromatase inhibitors that I will be treated with following the chemo. This means that there is now a relatively safe way for us to harvest my eggs, fertilize them, and freeze the resulting embryos before I start chemo again—a slight variation on in vitro fertilization (IVF).
Of course, there is no getting around the fact that I'm 39 and have already had chemo once, which means that this whole thing is even more of long shot than usual. And unlike other couples who can try IVF multiple times (resources permitting), we pretty much have one shot before I have to start treatment—to try a second (or third or fourth) time would mean an unacceptably risky delay.
If anything, we are now more convinced than ever that it would be too risky for me to try to carry a child. And that means—if the IVF goes well and we have some promising embryos to freeze—we will be looking to a surrogate. And that's a whole other minefield that we are not going to try to navigate just yet.
For now, we are just focusing on the IVF piece. We've found a great doctor—one who is doing pioneering research on fertility preservation in breast-cancer patients—and have had the initial consultation, tests, and blood work. (My right arm has improved enough that his phlebotomist was able to get 10 vials of blood with just one stick on Friday. She is my newest hero.) Again, we have a small window to work with, so things will be happening quickly from here on out.
We'll let you know how it goes in future (and shorter) posts.
posted by Jody Rosen Knower at 11:37 AM
2 Comments:
Holy. Shit.
Jody and Zach,
I've just been catching up on your blog, and don't know where to start.
So I will start with the easiest issue, and send you our sincere wishes that your toilet is installed, and bathroom is functioning. Having done a few of those ourselves, we know that it can be a true test of one's personality. If the bathroom is not yet finished (in which case, I imagine even patient souls like you are getting impatient), come down here for a weekend in Zach's old apartment. Heck, even if it is done, come down for a visit! We promise you peace and quiet....with good company and lots of noise whenever you're willing to venture upstairs. If you find yourselves with extra time on your hands while visiting, there are a lot of fingerpaints and new playdough in the basement and Ben and Emily would love to show you how it's done! Or we'd be happy to offer Zach our kitchen once again....
You are both in our hearts and prayers,
Love,
Melissa.
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