There's been a post brewing inside me that hasn't come into being because I don't have the right words. The words aren't there because the thoughts aren't fully formed yet either. I have three children who are going to grow up living in this world whether I like it or not. The world, I mean, whether or not I like the world. I do like the world. I think it is good. God made some pretty cool stuff. We've messed up a lot of it, but we've done a lot of good, too. I don't agree with all of it, though.
I hope that my children never have to deal with cancers of their own. If they do, I hope that it is so far in the future that an inconceivably benign treatment exists by that time. What I would like more than that, though, is that cancer not be an issue. Not for them or for anyone else. Herein lies the crux of the post that I can't quite get together yet.
We (citizens of the world) spend a lot of time, energy, and money on finding a cure for cancer. We absolutely should continue to do that because people are going to continue to get cancer and will need treatments. All of these resources are going toward the back end of the disease - fixing what is already broken.
What if we focused on the front end? What if we gave as much time, energy, and money preventing the body from being broken in the first place? This is a tangled subject, thus my impasse.
Stay tuned...
Thursday, October 17, 2013
Sunday, October 6, 2013
Genetics
A lot has happened during my blogosphere hiatus. Perhaps sometime I'll write about our summer adventures, but not today. This post is going to deal with the impact of knowing genetic information. I'm not going to try to unpack the ethical or political aspects of the unraveling of the genetic code. Instead I'm just going to chronicle the chain of events that has extended from knowing the results of genetic information. We'll start with some backstory and move on to current events.
Shortly after Cathy's diagnosis she was genetically tested to determine if she carried the BRCA gene mutations. When women as young as Cathy are diagnosed with cancer this is a relatively common diagnostic step and one that is helpful in determining a course of treatment. It was determined that she is positive for the BRCA1 gene mutation.
This knowledge, along with the triple negative typing of the cancer meant that a bilateral mastectomy would be the best course of treatment to safeguard against recurrence. It also meant that at some point having her ovaries and fallopian tubes removed would be a good idea because the BRCA1 gene mutation is also linked with an increased risk of ovarian cancer.
Gene mutations are often hereditary. Cathy's parents were tested to determine if one of them was the transmitter. We learned that Cathy's mom, Jayne, is positive for the BRCA1 mutation as well. Jayne did a little more research on her family history and learned that her grandmother had died of a cancer that looked to have originated in her ovaries. After much medical counseling, Jayne decided to take some preventative actions.
Jayne began with surgical removal of her ovaries and fallopian tubes. Pathology indicated that there was cancer present in both tubes and in one ovary. Fortunately, due to the timing of the surgery, no further treatment was necessary for Jayne. Had she waited even a few more months to do the PREVENTATIVE surgery, her course of treatment would have been much more extensive. If she had not had the surgery and waited until she was symptomatic the odds of successful treatment would have decreased greatly. Wwwsshheww!
Jayne also had a prophylactic mastectomy to prevent occurrence in the breast. In a few hours she is having a second surgery to clear up some complications with the first surgery. Prayers for her would be appreciated, I'm sure!
This past week, Cathy met with a gynecological oncologist to discuss future surgery. Cathy will have her ovaries and tubes removed in the spring or summer as a preventative measure against ovarian cancer. She has not decided if that surgery will include a hysterectomy, as well. We will need to do some further reading about the roll of the uterus in BRCA related cancers and the long term effects of that surgery before she decides.
I can't speak about the ethics of genetic testing. I didn't really even think about it when Cathy was tested. At that time it was just another tool in the arsenal to fight the disease that she had. I do know that the results of the genetic testing prompted a surgery that likely saved her mom's life. I also know that prophylactic surgeries for Cathy and Jayne will take risks in the 80+% range down to single digits.
People often ask if we will have our children tested, especially Clara. My hope is that medical practice and the life practices of our society in general will change to a point that makes genetic testing unnecessary by the time it would be an issue for them. However, when Clara or the boys reach an age when it would be an issue or their genes might be passed on to children of their own we will probably have to discuss that if we don't have cures or better insight into cancer prevention.
Shortly after Cathy's diagnosis she was genetically tested to determine if she carried the BRCA gene mutations. When women as young as Cathy are diagnosed with cancer this is a relatively common diagnostic step and one that is helpful in determining a course of treatment. It was determined that she is positive for the BRCA1 gene mutation.
This knowledge, along with the triple negative typing of the cancer meant that a bilateral mastectomy would be the best course of treatment to safeguard against recurrence. It also meant that at some point having her ovaries and fallopian tubes removed would be a good idea because the BRCA1 gene mutation is also linked with an increased risk of ovarian cancer.
Gene mutations are often hereditary. Cathy's parents were tested to determine if one of them was the transmitter. We learned that Cathy's mom, Jayne, is positive for the BRCA1 mutation as well. Jayne did a little more research on her family history and learned that her grandmother had died of a cancer that looked to have originated in her ovaries. After much medical counseling, Jayne decided to take some preventative actions.
Jayne began with surgical removal of her ovaries and fallopian tubes. Pathology indicated that there was cancer present in both tubes and in one ovary. Fortunately, due to the timing of the surgery, no further treatment was necessary for Jayne. Had she waited even a few more months to do the PREVENTATIVE surgery, her course of treatment would have been much more extensive. If she had not had the surgery and waited until she was symptomatic the odds of successful treatment would have decreased greatly. Wwwsshheww!
Jayne also had a prophylactic mastectomy to prevent occurrence in the breast. In a few hours she is having a second surgery to clear up some complications with the first surgery. Prayers for her would be appreciated, I'm sure!
This past week, Cathy met with a gynecological oncologist to discuss future surgery. Cathy will have her ovaries and tubes removed in the spring or summer as a preventative measure against ovarian cancer. She has not decided if that surgery will include a hysterectomy, as well. We will need to do some further reading about the roll of the uterus in BRCA related cancers and the long term effects of that surgery before she decides.
I can't speak about the ethics of genetic testing. I didn't really even think about it when Cathy was tested. At that time it was just another tool in the arsenal to fight the disease that she had. I do know that the results of the genetic testing prompted a surgery that likely saved her mom's life. I also know that prophylactic surgeries for Cathy and Jayne will take risks in the 80+% range down to single digits.
People often ask if we will have our children tested, especially Clara. My hope is that medical practice and the life practices of our society in general will change to a point that makes genetic testing unnecessary by the time it would be an issue for them. However, when Clara or the boys reach an age when it would be an issue or their genes might be passed on to children of their own we will probably have to discuss that if we don't have cures or better insight into cancer prevention.
Friday, October 4, 2013
No News Is Good News
I was a young driver just before the days of cellphones. In high school and college I drove long distances pretty frequently and I notoriously forgot to call my parents when I had arrived at my destination. Doubtless, they were left to wonder if I was safe or dead along the road somewhere. I know that my mindlessness caused them stress, but they would always say, "No news is good news."
The last four months have been a break from constantly thinking about cancer. During that time I've thought about cancer frequently, but I needed to have some time that it wasn't at the forefront of my mind. So I didn't write. For me, writing meant that I was fighting. Iwanted needed to take a break from the fight and enjoy the life that God had given back to us.
All of you who love Cathy can assume that no news is good news. She is cancer free, not dealing with major implant issues, and regaining strength! Yoga has been an amazing therapy for Cathy. She still suffers from some pretty painful arthritis, particularly in the hands/wrists and lower legs/feet. Her psoriasis is still in high gear and we believe the two might be related. No solutions for that right now, but yoga is the best way for her to feel better.
In general, things are good. Clara is two today. It gives some perspective on how long this fight has gone on. She was 7 months at diagnosis. My girls have been through a lot and inspire me daily.
The last four months have been a break from constantly thinking about cancer. During that time I've thought about cancer frequently, but I needed to have some time that it wasn't at the forefront of my mind. So I didn't write. For me, writing meant that I was fighting. I
All of you who love Cathy can assume that no news is good news. She is cancer free, not dealing with major implant issues, and regaining strength! Yoga has been an amazing therapy for Cathy. She still suffers from some pretty painful arthritis, particularly in the hands/wrists and lower legs/feet. Her psoriasis is still in high gear and we believe the two might be related. No solutions for that right now, but yoga is the best way for her to feel better.
In general, things are good. Clara is two today. It gives some perspective on how long this fight has gone on. She was 7 months at diagnosis. My girls have been through a lot and inspire me daily.
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