Benign! Even though I had a dire diagnosis of metastatic melanoma, with a second opinion correcting to invasive melanoma, my surgeon predicted my chances of coming out clean were between 85 and 90 percent. Thank you. But the time between hearing the scary diagnosis and learning the pathology results from surgery totaled 30 agonizing days. Worst days of my life. The anxiety ended when I accidentally learned the results.
|Our latest refrigerator decoration won't be coming down anytime soon. Benign pathology results!|
Accidentally? Here's what happened.Due to upheaval on almost every level of our lives, PK and I discussed changes, including my switching primary care providers. I decided on moving to the small Rogue River Family Practice Clinic just a mile away, where we are friends with two of the three doctors. This is a small town, and the clinic is a small practice. The community knows and mostly loves and respects the physicians and two physician assistants, and the office staff, some who've put in 30 years and know patients by name. I went there Friday morning to become a patient.
As I was filling out paper work, one of the clinic doctors, Brian Mateja, who happens to be PK's doc and a personal friend, saw me and said, "I was going to call you this afternoon to see if you got your test results yet."
He reads my blog, so he knew about our little drama and me bleeding from the eyes.
"Do you have the results?" he asked.
"Would you like to see them?"
Let's go. My heart thumped as I followed him to his office. I gulped air as he fired up his computer and logged into the network that contains medical test results. Finally. I'm where I've need to be; I will soon know whether I'm going to be a cancer patient or can go on my merry way as a healthy person. I'm trying to remain calm. Life and death shit here. I'm going to know in a second or two.
Soon I was peering tearfully at his computer as words of grace appeared on the screen: BENIGN for two lymph nodes, BENIGN for two more lymph nodes, and no evidence of cancer for the excision site and margins.
The black boulder that had been poised on a cliff above me rolled away, and my spirit lifted skyward with an explosion of gratitude and relief.
However. At the same time, I learned that the results had been available since Jan. 27, three days earlier! Despite promises I would be contacted about results, I did not receive a call from the surgeon's office.
Dr. Mateja spared PK and me two and a half more days of spirit-crushing anxiety. He saved us from the heavy work of preparing to ask questions about treatment options, survival odds, and oncologists with melanoma expertise. His great gift of peace of mind required about five minutes. He was going to call me, but I just happened to be there. He's not even my doctor. He's my friend.
Can't doctors be our friends? Our advocates? Of course they can, and many are. I'm not sure what happens, though, with doctors who neglect their patients' mental and emotional health. I am sure my surgeon did a great and thorough job on cutting me up, and with good results. I am grateful for his expertise, judgement, and the confidence and skill his job requires.
But did he care about me personally? Probably not. He doesn't know me, and I don't know him. And I guess, with surgeons, it doesn't matter, since you see them three times: consult, surgery, and post op appointment. What's the sense of establishing a relationship?
But still. I think all medical care providers need to respect that patients are often anxious to the max, to the point of nausea, to blowing up the blood pressure gauge, especially regarding cancer test results and staging. Sharing test results in a timely manner should be a top priority in medical offices. Not necessarily for routine test results, but certainly those upon which a patient's life may turn.
Medical office managers might consider providing a form to patients listing options about how they prefer to learn critical test results, and then making sure somebody has responsibility for contacting patients as a part of their job. I know it's complicated. Doctors don't have time; office staff lacks credentials to answer medical questions etc. etc. But there must be a solution.
I could have been informed via a simple text message or email that my results were good. I could have indicated that getting text results that way, good or bad, would be OK. I wish someone would have asked.
The point: Knowing is better than not knowing. It either provides relief or gives patients a starting point for life's next chapter.
At my post-op appointment Monday. I will thank the surgeon, but also inquire about the practice's protocol for informing patients about their test results. It isn't his job to worry about that, probably, so I may ask to talk with the office manager and/or practice administrator in an attempt go to bat for all patients whose lives get put on hold and whose brains go ballistic while awaiting potentially life-threatening results. Surely there's a way to handle this.
I will also be talking with the dermatology office, where the wait time between my biopsy and when I learned I had melanoma was 19 days. At least I wasn't stewing in stomach acid during that wait because I had no reason to think that melanoma cells were working on my back. Maybe there were excellent reasons it took so long to be notified. But maybe not.
Since publishing the first blog about the Cancer Club, I've been contacted by well over 100 people, including two local women who survived stage 4 metastatic melanoma.
The first has been out of the woods for 12 years. Unlike some melanomas, hers was treatable with chemotherapy, which continued for one year. She also had all lymph nodes removed from the groin of the affected leg. She still has check-ups every six months.
The other woman had the same diagnosis, but her disease was not treatable by currently available means. She wrote in a Facebook comment:
I was diagnosed with full blown Stage IV melanoma in December 2012. There was nothing they could do for me in Medford. I was accepted into the IL-2 research program in Portland and we beat it - AND YOU WILL TOO. Call me, anytime, night or day.The generous spirit of that last comment, call me anytime, night or day, and over-arching optimism, hopefulness and courage that permeated the FB and blog comments, phone calls, private messages, mailed cards, on-the-street hugs and other communications were inspiring, heartwarming, and strengthening. Thank you all!!
Still in the Club
The Cancer Club is huge, a fellowship of support, compassion, shared experience and practical advice. The melanoma I was diagnosed with may be gone, but I'm still in the club. I'll be having dermatology exams every three months for awhile, and will always be on the alert for skin changes and other symptoms. I will never be the same.
If ever I have another medical test, the results of which could change my life, I will do as one friend advised regarding getting timely results. Eileen Amaranthus, whose husband, Michael Amaranthus is cancer free six years after a diagnosis of stage 4 esophageal cancer, learned how to be a bull-dog advocate:
I kept a journal and wouldn't leave the appointment, any appointment, without running through the following questions: who, what, where, WHEN, WHY, how long, what's the next step, what are other options, what aren't we asking? I'd take notes. It helped to be informed so you can ask specific questions. We requested a specific radiologist. We asked the oncologist's opinion about treatment options we'd heard about, and also, "If this was your husband, what would you do?" I always asked the oncologist why she chose the treatments she did.
As for getting timely test results, I was most definitely the squeaky wheel. I initially called every day. Now I do not leave the office until they tell who is reading the lab, who will get back to us, and how do I reach that person? My first point of follow-up is with Michael's primary care doctor. When results come to the primary care office, they are faxed to us. (If results were slow) I would call their office and the lab until someone had an answer.