A year ago, I was in school working towards a medical assisting certificate in what I now look back at as that pleasant, productive, treatment-free, "cancer-free" year. One day during my medical terminology class we came to the root word "iatro-" meaning treatment. When paired with the suffix "-genic" (caused by), we have iatrogenic. The example that day was "iatrogenic rib fracture due to the administration of CPR." As I tried unsuccessfully to sit still, shifting in my chair, leaning forward and back and stretching my torso, I inwardly acknowledged the irony of me sitting there trying to breathe. At that time I was struggling constantly with severe shortness of breath and intermittent pain on my right side due to radiation-induced scarring in the upper lobe of my right lung, as well as several radiation-induced rib fractures. Iatrogenic, indeed.
The whole metastatic nightmare aside for today, survivorship of breast cancer - really any cancer - is not necessarily the pretty, robust, healthy Pinktober picture. I recently read an article by the mother of a childhood cancer survivor. Of course, she was beyond ecstatic that her daughter had survived, but she wanted the reader to realize the cancer "journey" does not end with the news that one is cancer-free. This child had been hospitalized repeatedly for multiple iatrogenic issues and was not and would not in the foreseeable future be a healthy child. Emotional, physical, and financial stresses can be givens in this world of survivorship.
It is touchy to be in that place. I was in that place last year. Who wants to complain about surviving a killer disease? Who wants to seem ungrateful or unappreciative? Yes, ultimately being alive is the desired endpoint of treatment. I would much rather be here, "above ground" as they say, than the alternative. But being alive after cancer treatment can come with myriad conditions that affect quality of life moderately to severely. Many survivors have an aversion to asking for help with or even discussing these problems, as they seem somehow "small" compared with oh, you know, dying of cancer. Thus survivors may feel themselves to be physically and/or psychically broken or struggling, but don't want to rock the boat with what seem in the big picture to be "small problems."
Here are some examples of what the rosy cheeked-survivors in all of the October PR may be experiencing:
- Radiation-caused rib fractures: All of the literature call these a rare complication. My oncologist and the radiation oncologist said they could count on the fingers of one hand their patients who had these. I am one of them. At this reading my scans show five now-healed fractures.
- Scarring of tissue in the radiation field: I also have experienced this, in my right lung and right pleural lining, and will continue to find breathing difficult because of it. As my plastic surgeon (a survivor himself) said to me - "Radiation.... It's forever."
- Post Mastectomy Pain Syndrome: According to a study detailed in the American Society of Clinical Oncology newsletter, "20-68% of breast cancer patients have chronic postoperative breast pain, commonly known as post-mastectomy pain syndrome (PMPS). Usually this is neuropathic in origin and can begin in the immediate postoperative period, but may appear 6 months postoperatively or later. It often persists beyond the normal healing period, sometimes years." The cause is unavoidable surgical damage to the T4 and T5 nerves where they exit the chest wall. I am one of these patients as well. After several weeks- and months-long bouts of debilitating pain my damaged intercostal brachial nerve has settled with the help of gabapentin, which I will likely be taking for the rest of my life.
- Chemo brain: Some people think I'm joking when I reference my chemo brain, and well meaning people commiserate with me saying "me too! I can't remember a thing any more!" Technically known as post-chemotherapy cognitive impairment (PCCI), this affects up to 75% of people during treatment, and up to 35% have issues that continue for months after treatment has finished. Concentrating on a task, retaining information, inability to focus on reading, remembering what someone just said, a constant feeling of fogginess - these are some of the symptoms that plague me and others in my shoes. I did not feel completely over it almost a year and a half after the end of my first chemo regimen, and now heading into my sixth month of chemo for MBC, I feel in possession of a very small fraction of my previous intellectual abilities. I owned a book shop for thirteen years but struggle now to read at all.
- Rapid, forced menopause: The severity of menopause symptoms is heightened by the abruptness of what is in the natural setting a potentially years-long process. This can be a result of hormone suppression to treat hormone receptor positive cancer (treatment ranges from a daily pill to removal of the ovaries) or chemotherapy or both. While being slammed into and through the menopause process is difficult for any woman, it is especially difficult for younger women with breast cancer, of which there are many. A process that in the natural setting can take years happens instantly (with oophorectomy) or in a few short months of chemotherapy.
- Fatigue: Please see this post for an excellent and accurate description of cancer treatment fatigue.
- Peripheral neuropathy: I don't have this one!!! At my worst my finger tips tingle, peel, and crack at some point during every chemo cycle. Severe pain or numbness in hands and feet can seriously affect activities of daily living, like picking up objects, buttoning a shirt, even walking. At its worst heart rate, blood pressure, and organ function can be adversely affected.
- Complications of breast reconstruction: I have been really lucky on this front. I had one surgery to both remove my breasts and replace them with implants. This is not the norm. Though my reconstruction site has never been comfortable (I had no idea it would feel this way almost two years out), I have had no moderate or serious medical complications. I read about women frequently who have been in and out of the operating room with complications of reconstruction, who have had surgeries into the double digits, who have had infections, inordinate amounts of pain, undesirable visual outcomes. Cancer patients make rapid, difficult choices about surgery and many other things as well. As I have written before, we choose constantly between extremely undesirable things (no breasts or fake breasts is just one example, and one of the more benign examples at that), and yet we have to choose.
- Anxiety: "People who have not confronted a life-challenging illness may be perplexed by the residual anxiety in patients, long after they have successfully completed treatment," states Jan Hoffman in the NYTimes Well Blog on the subject. We're wired to respond to threats, and cancer is a threat. For survivors, there is always the threat of its return. Data suggests that spouses are also prone to heightened anxiety after a cancer diagnosis and well into the years of survivorship.
- Heart problems: Some of the drugs that treat cancer carry the risk of damaging the heart muscle over time. One of my drugs, Herceptin, is one of these. Regular echocardiograms monitor the heart function and if it becomes compromised a potentially life-saving drug is off the table. Additionally, the patient has the added physical and emotional burden of requiring treatment for cardiomyopathy. Radiation can also damage the heart.