The Other Side of the Stethoscope

TON - December 2013 Vol 6 No 11 — December 20, 2013

I am 60 years old and an ovarian cancer survivor. I’m also an emergency department doctor who usually is treating people, making diagnoses, and being the one in charge. However, much the same as most women with ovarian cancer, my diagnosis came out of the blue with minimal symptoms at an advanced stage. I found myself for once on the other side, as a patient. I’m happy to say that I am now 2½ years disease-free from my last treatment in January 2011.

The start of my story is in 2009. I was working full time in the emergency department with the usual 8- to 12-hour shifts of days, evenings, and nights. That year I was pretty busy working in both Sacramento and San Diego, keeping up with one son in college and his rowing regattas, and another son who was a junior in high school, active in sports and with college applications coming up. In 2010 I scaled back to working just in San Diego with a perfect number of shifts, more time at home, working out more, and going to yoga. I had a normal primary doctor visit in November 2009 with a normal pelvic and rectal exam. So why, I wondered over March and April in 2010, was I not losing weight and did my pants seem tighter? I think I said something maybe a year before about bloating and all my weight going to the middle—but that was just “becoming matronly”—you know, the menopause thing. I just needed to watch my diet, drink less wine, and exercise correctly, right? And the indigestion, well what do you want when you eat cold food in fast bites between patients and charting or dictating? I had the same thing off and on over the years. Doesn’t everyone have TUMS in their work bag or glove compartment?

The first week of May in 2010 I felt like my clothes were really tight. After coming home from a Saturday overnight shift, I finally laid down on the bed and palpated my abdomen. Uh oh, I thought, that feels like a mass. So I slept my usual 5 or 6 hours in the morning, but when I checked again Sunday afternoon, it was still there—making my first hope that it was a lump of stool less likely. OK, I’m thinking, what are the possibilities? Maybe it’s just a giant fibroid; it was a middle to right-sided mass that I could feel and was quite firm. Or, could it be colon cancer—I was overdue for another colonoscopy, but I had no polyps or anything amiss in 2003. Or, worst case scenario, ovarian cancer. Yes, I thought of it, but at that point, that was a death sentence in my mind and not an option I wanted to consider. I knew there was no breast, ovarian, or colon cancer in my family but that wasn’t enough. I didn’t say anything at home because I didn’t know very much; I just had worries.

First thing the next day, Monday, May 10, I called my primary doctor and left a message with the office staff to tell her that “I felt a mass in my abdomen.” That caught her attention and she added me in at noon. She didn’t say much after my pelvic exam, but labs including CA-125 were ordered, drawn that day, and a request for an ultrasound was sent. I scheduled my ultrasound for the next morning. Tuesday, May 11, I was at the community radiology center—they asked if I minded a student doing the exam. No problem, been there. But after a minute, the regular tech comes in and takes over—not a good sign. Transabdominal and intravaginal US, and hmmm, why were they doing extra views that I know are for intra-abdominal fluid? Thankfully the radiologist had me come in to review the ultrasound and talk with me. He was very direct and told me that widespread ovarian cancer was the most likely diagnosis. He called my primary doctor while I was there, and she arranged insurance approval for a contrast CT that same afternoon. However, in the meantime I was in shock—I have metastatic ovarian cancer, I am going to die. I went home in tears to tell my husband. I went back for the CT in the afternoon, which confirmed and defined the extent of my disease. No invasion of the liver or lungs but huge ovarian tumors, a coating of metastases on virtually everything else, and a large amount of ascites in the abdomen. I had also learned that my CA-125 was 2900, which was sky high.

How do you deal with all of that? This is stuff that happens to other people. I went to my son’s track meet that same afternoon, and had several people comment that I was quiet—just tired from work I said. My primary doctor arranged a referral to a gynecologic oncologist the very next day. She fit me in quickly as a referral, and it didn’t matter that I had to wait a couple of hours in the office, because I was scared stiff. After a discussion of my cancer (I was stage 3C) and the options, the plan was urgent surgery followed by chemo. This was on Wednesday, May 12. My husband was due to go out of town on family business that Friday but the doctor wanted to do surgery on Monday. So he went the next day on May 13—which happened to be our anniversary—and returned on Saturday. Meanwhile, I was the organizer for an awards banquet that night at the high school, my younger son had his first AP exams that week, and the older one had finals week at Cal. How do you tell your kids you have cancer? There is no easy way and certainly no good time. Or as one friend pointed out when I worried about it, there just is no good time to have cancer. But the week went on, both boys were told in person, we did an online will—you know, one of those things you keep meaning to get around to—and I did the prep for surgery on Monday, May 17.

The signs and symptoms of metastatic ovarian cancer were nothing for so long. I was menopausal, so bloating was nothing I paid attention to nor was indigestion. In retrospect, the eating less was probably early satiety. No pain until the day or two before surgery and not bad then. The tight pants and increased girth were partly mass and partly fluid—and at that point I was already in a late stage. However, in 1 week I went from feeling a mass to having surgery, and I am ever so grateful that my primary doctor saw me urgently and paid attention to my call, to the radiologist for including me in the verbal report and discussion with my primary doctor, and for the immediate referral to a gynecologic oncology specialist who saw me right away. I am very lucky in that regard, or I might not be here today to tell this story. Paying attention to those nonspecifics in women is important—like the “I just feel tired” complaint I hear from an 80-year-old woman that really is a heart attack. In all women the bloating, indigestion, back pain, or other miscellaneous “not feeling right” complaints certainly merit a closer look and at least inclusion of ovarian cancer in the differential.

My journey since diagnosis has been chock-full of experiences on the patient side of things. First surgery with tumor removal, hysterectomy-oophorectomy, splenectomy, descending colon resection, appendectomy, node resection, omentectomy, and stripping of the bladder, ureters, and liver. I woke up in the ICU a day and a half later and 30 pounds lighter when they turned down the propofol drip. I was intubated, with an IJ central line, and later a PIC line, peripheral IV sites, multiple drains, Foley, and NG tube. No way was I rolling over, much less sit, stand, or walk. But it all happens. The nursing care was so important: first the focus on small steps and then getting stronger to get on with the rest of the treatment. And the recognition that this was a scary time with so many unknowns, that empathy, meant a lot to me.

I had a port placed and 6 months of chemo 3 weeks out of 4 with dose-dense taxol and carboplatin, and then IP or intraperitoneal chemo was planned. I lost my hair, which for me was a much more “in your face” reminder that I had cancer, and was fatigued. Still I gradually went back to long walks with the dog, yoga, and exercise. I did read about and take advantage of supplements and had acupuncture prior to chemo. My chemo was given at the gynecology-oncology office, which for me was a good sharing time. In the chemo room it was all women with gynecologic cancers, and the camaraderie was appreciated. The nursing care was focused on women with these cancers and associated treatments.

However in October during laparoscopy for abdominal port placement, I had too much scarring for IP chemo, so back I went to the drawing board. I opted for a second surgery after discussion with an oncologic surgeon who was recommended by my main gynecologic oncologist. Off of chemo for 2 months in preparation, in January 2011 I had a second major surgery with adhesion removal that freed up the intestines and liver, a periaortic node resection, resection of the cecum because it was adhered due to scar tissue, removal of the gallbladder, and multiple node biopsies. All were clean. Then heated intraperitoneal cisplatin in the OR—40-degree chemo swished around for a couple hours does a number on the GI tract! Another couple of days in the ICU, more drains, gastrostomy tube (which, by the way, was actually nicer than the NG tube, even if I did feel like a nursing home patient), subclavian line, then PIC again, and eventually recovery.

Every 3 months I get my CA-125 and exam and have had a couple of follow-up MRI scans. So far so good, and I am thrilled to make the 2-year mark disease-free. But every 3 months I go into a couple weeks of building anxiety—what will my number be? And is that indigestion just indigestion? I have multiple sizes of jeans under the bed just in case I need them again. It really becomes a few weeks of fear. On the other hand, most of the time it is not on my mind. I returned to work part time and family life continues. But my perspective is certainly different.

I also have tried to give back a bit and look to the future for ovarian cancer treatment. I am participating in the Survivors Teaching Students program of the Ovarian Cancer National Alliance, to tell our stories to nursing and medical students and get the word out about the nonspecific signs and symptoms as well as the importance of risk factors and of having a gynecologic oncologist. I also have been fundraising with the Clearity Foundation, which helps women with resistant or recurrent ovarian cancer get genetic typing or blueprints of their cancer. This provides personalized information about the best treatment options for this disease that is so often diagnosed in a late stage and is so often recurrent.

I encourage you to think about nonspecific symptoms differently and keep ovarian cancer in mind—it is so silent and for many the journey to diagnosis is long and arduous. And as a provider, think about how you would want to be treated as a patient—it is very different on the other side.


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