My wife is a 19 year survivor of CML, one of the lab rats who took the odds on a clinical trial of what's now sold as Gleevec. She was almost 30 by the time her cancer was correctly diagnosed, and the treatment nearly killed her.
Last fall, I was diagnosed with a rare type of melanoma in an unusual location (did you know there was cancer of the eyeball? I'll admit that I did not) at almost 40. I'm cured, although the treatment side effects are permanent and significant.
We're ready for cancer to be something that happened one time, in that most challenging year, that we learned important life lessons from. But a diagnosis in young adulthood means that the goal of my treatment is to live 50 years with cancer.
There are many wonderful services designed to help cancer survivors integrate the life altering experience of diagnosis in early adulthood. The NCI rounds them up with lots of linky love here. The tips on finding your life partner, maintaining fertility and staying in your job through early cancer are vital for most younger cancer patients.
I don't use any of them, because they don't seem to apply to me: I'm married, not looking to add to my family, and was already self-employed and therefore have the worst insurance state regulators will allow. The one point of connection for me is simply my age, which means many, many years (I hope!) of thinking about the functioning of my otherwise healthy young body.
After my diagnosis, second opinion and treatment (elapsed time 3.5 weeks), we were stunned. Another rare cancer in the family seemed like a long shot. Mrs Phoenix had been diagnosed at 29, 19 years ago, with a type of leukemia typically seen in older black men who have worked with certain chemicals. So there's 'outlier', and then there's 'this patient broke my diagnostic worksheet, OMG zebra!' from the oncology residents.
I too became a zebra last fall. And that's just weird. Like a double rainbow, but bad. A double rainbow of oncology. While any statistician could tell you that the odds of two independent events don't effect one another, a Bayesian analysis will explain how astonished we were.
We'd also structured all of our financial and family planning around the informed prediction that she was going to fall out of remission at some point, after we had kids and before they were grown. Which just goes to show you that actuarial tables can only help you so much in thinking ahead.
Pretty quickly we found out that cancer is getting less fatal all the time, for everybody except young adults. How can that be? There are a number of factors that seem to be affecting improved survival after cancer diagnosis for kids and middle-aged (and older) adults, but it's not clear why young adults aren't getting the same benefits.
There are two common-sense explanations: My wife's experience, of being diagnosed with exhaustion, measles, pregnancy and chicken pox before finally beginning emergency treatment for a classically presenting case of leukemia, is typical for younger cancer patients. She was under the care of university health, and they see quite a bit of exhaustion, contagious disease and unplanned pregnancy, so they weren't looking for a zebra.
My own experience brings out the other common-sense explanation: A healthy immune system, in a young person who is otherwise well, should chew up and spit out mutant cells. The very virulence of invasive cells should trigger a response to attack & kill them. But for some reason, that didn't happen for me--instead, my immune system allowed them to set up a manufacturing facility in my eyeball.
It's not clear why my immune system failed at that, but we learned that the invasive malignancy that was trying to kill me is a different type of cell than the slow-growing cancer more often found in the same site. So my take-away was, There is no such thing as 'cancer of the ___ [insert name of body part]', there is only the particular malignancy.
Finally, I'm feeling great and ready to put cancer behind me. I've got a business to run, a kid to finish raising--teenagers need parents as much as toddlers do, and for the same reasons--and aging parents who need my support.
The good news is the rapid development of immunotherapies targeting particular growth patterns in specific malignancies. Because of my youth and health, which are still great compared to the average patient with my disease, I'm a strong candidate for one of the clinical trials of melanoma-met-specific drugs.
The bad news about the good news is, that means my cancer is treatable even if I'm in the 37%...which means I have to keep on top of scans. Fighting my insurance company and oncology clinic, because I know that the cancer I had need not kill me even if it is lurking in my liver, adds a challenge: If I want to get old, I have to persist in the role of cancer patient.
My particular diagnosis means attending to/insisting on scans from 3 types of doctors, on a followup schedule that recedes over the horizon if I try to visualize it. I'm ready to forget this ever happened and get on with the future I expected, but I can't fail my wife and child by letting my vigilance flag.
My wife, who has been in remission since 1994, was discharged with a simple home test for whether she needs further care for that cancer: Is there blood shooting out of your ears? Did your hot shower leave your entire body visibly bruised? If yes to either, you have relapsed into leukemia, do not pass Go or the hematology clinic. As a contrast, that sounds good to me this year.
The oncologist who began treating me 15 months ago is retiring, and she's counting on me to help train her replacement in the newer discipline of cancer-survivors treatment. That feels like a vote of confidence as well as a burden I'd rather not take up. However, if I've only learned one thing, what I've learned is that no one cares as much as I do about how far I have to carry that weight, out into a decades-long future. If everything goes right.
The caption from our family's holiday greeting card, which came with pictures of the places we went in 2012 that we'd always wanted to visit together:
This happened. Best wishes for another great year together. We're happy to be here.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.