The lump that didn't go away

I was forty years old when I felt a lump in my right breast. I didn't think this was particularly frightening. My mother had had fluid-filled cysts multiple times and I was probably just following in her footsteps. I was healthy and had always been healthy. I actually had a hard time locating my health insurance card to go make an appointment to have a doctor check me out because I never used it. I didn't think it was serious but I felt that any lump deserved to be looked at. So I found somebody to take a look. The doctor assigned to me also thought the lump was unlikely to be serious but scheduled a mammogram just in case. I had had a baseline mammogram five years previously at the age of 35 as was recommended by my physician at the time. The film was almost completely white because I have dense breast tissue. That was true again: nothing showed up on the mammogram. But that still left the lump unexplained and it was getting larger. An ultrasound was scheduled that clearly showed the mass. When they did a needle biopsy, I still expected the lump to deflate as the fluid was drained. But the lump was solid. The pathology report came back: I had ductal carcinoma, breast cancer. More tests were scheduled as well as appointments with an array of doctors: an oncologist, a surgeon, a radiologist. My tumor turned out to be stage III, which means large with lymph node involvement. And by "large", I mean dumbbell shaped and about eight centimeters along the axis. Pathology also reported more information about the tumor. It was ER/PR negative, which means not sensitive to estrogen or progesterone, which in turn means that an array of drugs used to treat breast cancer wouldn't work on this tumor. It was also HER-2/neu positive at the 3+ level (the highest rating). This meant that the tumor expressed many growth receptors, in other words that it could grow aggressively. All in all, this was bad news. The prognosis at time of diagnosis for this situation was a 50/50 five year survival rate. I was 40 years old. The chance of getting breast cancer at the age of 40 is about 1 in 250. This is higher than I would have guessed but still way too low to make me think twice about it before my diagnosis came back. The first time I cried was when I called to tell my parents the news. About this time I got in touch with an old college friend who had had breast cancer about five years before me. She was my rock. She had taken up studying breast cancer as a second vocation after her diagnosis and was remarkably well informed about treatments (both standard, alternative, and experimental), side effects, and prognosis. She was a guide, a comfort, and a resource, all in one. She's the one who first told me about a promising new drug called herceptin that I ended up taking even though it was still in clinical trials. I'm convinced that the major portion of my good outcome can be laid at her feet. And it's her example of helping other women through their cancer diagnoses and treatments that inspired me to write up this story, in hopes that I can help other women the way she helped me.

Treatment: Chemotherapy

Things started happening quickly. Because the tumor was large and likely to spread rapidly, my oncologist recommended having chemo before surgery to shrink the tumor and kill any microcellular tumors looking to set up shop elsewhere. I had a port installed just beneath my skin in my chest to give easy IV access to the largest vein in my body. That way the harsh chemotherapy drugs would be less likely to scar my veins because they would be diluted more quickly than if they were injected into my arm. Three days later I started chemo: adriamycin, cytoxan, and taxotere. This combo was the most aggressive well-understood treatment for breast cancer at the time. I sailed through the infusions of the first two drugs and I was thinking that chemo was going to be less of a problem than I thought when I had a sensitivity reaction to the taxotere: deep flushing, coughing, inability to catch my breath. A nurse had been monitoring me closely looking for this very situation. A shot of Benadryl brought me out of it but I felt wrung out. They slowed the rate of infusion and I didn't move much for the rest of the afternoon. What I didn't know then is that I had no idea at that time what feeling wrung out was really like. But I was going to find out. Over the course of the next four months, I had five more rounds of chemo, each one three weeks apart. I lost all my hair. I had night sweats, tingling in my hands and feet, and mouth sores that made it difficult to swallow. My white blood cell count crashed so I started daily injections of Neupogen. (I couldn't bring myself to give myself the shots so dear friends came over to do it for me so I wouldn't have to go to the hospital for the injections, bless them.) I also became a big believer in carrying a bottle of Purel with me at all times. Then my red blood cell count dropped too so I started getting injections of Epogen. There's a reason that stuff is an illegal performance enhancer -- it really rocks! I didn't feel so much like dirt after the EPO kicked in. I still felt bad but better than dirt. Each round of three weeks broke down as follows: ten days of feeling rotten, ten days of feeling almost human, and then another treatment day, twenty one days in all. After each round I sunk a little lower and bounced back a little less. I was still working too; I would take my infusions just before the weekend, take a week off while family or friends stayed at the house to take care of me, then back to work on Monday. Fortunately I had a bunch of vacation accrued, an outstanding team and an understanding boss otherwise this wouldn't have worked. After the fifth round of chemo, I was so beaten down that I had to rest after the exertion of taking a shower. Chemo is bad news even with the spiffy new anti-nausea drugs. But with lots of help from my family and my friends and the folks at work, I was able to continue to take the drugs on schedule and have the best chance at killing all the cancer cells that might be lurking in the various corners of my body.

Treatment: Surgery

After six rounds of chemo, the tumor had shrunk enough to make surgery feasible. I had also had my lifetime levels of exposure to those particular drugs so that avenue was tapped out. I had four weeks off to build up strength before the mastectomy. That was great; it felt like a holiday. It was also remarkable how quickly I started to feel better after the chemo stopped. Very encouraging. But I had never had surgery before and it frightened me. Well, I had had my wisdom teeth out but somehow that didn't count. I wasn't a candidate for breast conservation surgery or immediate reconstruction because of the extent of my disease and the need for further treatment. So I had a modified radical mastectomy: removal of the breast and lymph nodes. As surgeries go, a mastectomy is a piece of cake: no cutting into muscles or bones or major blood vessels. Recovery is pretty quick all things considered. I was back at work in three weeks, after the drains were removed. And my surgeon did an excellent job with my scar. Everybody who's seen it, the radiation techs, my oncologist, the gal who fitted me with a breast prosthesis, everybody says so and they've seen enough mastectomy scars to know good from bad. But even a great scar doesn't make up for the pain of a hypersensitive chest wall or the numbness of the skin whose nerve endings have been cut. Nevertheless, I'm not signing up for reconstruction. Looking at the scar doesn't bother me that much and the thought of going through surgery again to construct a breast that won't have any feeling doesn't have much appeal. And since it had been seven weeks since I stopped chemo, my hair started to come back.

Treatment: More chemo

Although I was done with adriamycin, cytoxan, and taxotere, I wasn't done with chemo. I wanted to be treated with herceptin, a monoclonal antibody developed by Genentech specifically geared toward targeting her-2/neu expressing tumors. My oncologist agreed to treat me "off-label" since herceptin was only officially approved for metastatic cancers at the time. We started weekly infusions of navelbene, carboplatin, and herceptin, since research showed that other two chemo drugs seemed to make the herceptin work better. I was supposed to have twelve rounds off all three but my blood counts crashed again. So we backed off on the chemo drugs, only taking one or the other not both, but continuing the herceptin for three months. I was also back on the neupogen and epogen as well since my blood marrow needed all the help it could get. I didn't feel as bad with these infusions and so didn't need to take time off work to recover which was a bonus.

Treatment: Radiation

After the three months of the second set of chemo drugs, it was time to start radiation treatments. Radiation would be every day for seven weeks, a total of thirty-six sessions. Compared to all the other treatments I had had, radiation was a snap. I started a little competition with myself to see if I could time getting there, getting undressed, getting treatment, getting dressed and back out to the parking garage in under thirty minutes because then parking would be free. Like I said, radiation was a breeze. For some folks radiation knocks them for a loop but for me, my biggest challenge was beating the parking meter. Radiation did however increase the scar tissue in my chest wall and tighten that up substantially so it became important to keep stretching to maintain full range of motion.

Treatment: More herceptin

After radiation was over, we started up with herceptin infusions again. Research had just come out showing that infusions every three weeks worked as well as every week so that lightened up the treatment schedule considerably. And we just did herceptin, no other chemo drugs. As far as side effects from herceptin go, it occassionally made me burp. Compared to chemo, herceptin was frankly marvelous. Herceptin and epogen were among the only drugs I took during my treatment that made me feel like Western medicine was making real progress. This from someone who had been hooked up to a morphine drip for twelve hours after surgery so you can see I really mean it. I did get regular echocardiograms while on herceptin since there had been some women who had heart damage from it (not to mention the adriamycin) but I had no such problems. We continued the once every three weeks infusions for about another seven months, making about twelve months of herceptin in total (minus the hiatus for radiation). Years later, the results from the clinical trials from herceptin came in: it was as close to a cure for breast cancer as anything that's been seen to date. I was very fortunate to have had my friend inform me about it while it was still in clinical trial and to have an oncologist open to treating me with it before the results were officially known.

The upshot

It's been six years since my diagnosis. I've had four needle biopsies of my left breast for anomalies spotting via MRI. All have been negative. My chest wall was hypersensitive for about four years but then healed up to the extent that I could tolerate a prosthesis. And the prosthetics these days are remarkably lifelike; my clothes fit just fine. And through this ordeal I discovered that I was deeply and widely loved, that I was surrounded by a sea of support that had always been present but I had never its extent until I needed it. I am truly one of the luckiest women on the planet.