What one woman did when her doctor said there were no more options…

Several months ago, I joined a cancer survivor online support group created by a friend of mine that was having much difficulty.  The women in the group were exploring a very specific option and I thought learning about it would be helpful information for me.  What I found there was an amazing group of women who had endured so much and were not ready to accept that their life was near the end.  This is Margo’s incredible story…

Patsy

 

In mid-February of this year, in the office of my Pittsburgh oncologist, I heard the words I was dreading to hear: the chemotherapy regimen that was being used in an attempt to control my ovarian cancer, Carboplatin/Gemzar, was not working. Since my diagnosis of Stage IV ovarian cancer in February 2014, I had “failed” the original frontline therapy, Carboplatin/Taxotere, by very early recurrence, despite the use of Avastin. Therefore, my cancer was now considered highly drug resistant, including platin compound resistant. For this reason, there was to be no further aggressive treatment in my case, with only palliative treatment (low dose weekly Taxotere) to be used. I knew, without the doctor telling me, that this protocol was not intended in any way to be aggressive treatment for my case. I was also told that surgery was not an option either. I also knew from my own research, which he confirmed, that I would not be suitable for the regional clinical trials that now existed.

I walked out of my oncologist’s office, stunned. He had been directing the oncology team of my local rural western Pennsylvania hospital in my case, so it was unlikely that they would take a more aggressive course of action. My housemate, who had driven me to Pittsburgh for the appointment, had heard the same words I did, so there was no mistake. We both agreed that he looked pained upon telling me the news, so it clearly was something he did not want to do.

I simply was not ready to quit trying. A fighter in spirit, I had faced my diagnosis head-on last year by daily walking up to eight miles a day, gardening, and visits to local festivals and occasional kayak trips even while undergoing chemotherapy. Unfortunately, my recurrence between Thanksgiving and Christmas was heralded by blood clots, first in my left leg, and then in my lungs for which I was hospitalized for three weeks. During this time, additional chemotherapy had to be postponed, allowing the cancer to further surge ahead. Fighting my way back, I prepared myself emotionally and physically, to the best of my ability, to confront my cancer once again with the new chemotherapy regimen when it began. Despite the advanced nature of my illness and the harsh chemo regimen of the past two months, I still managed to walk and exercise diligently an hour every day, and had maintained almost normal weight. Giving up simply was not in my vocabulary, at least not quite yet.

Because my symptoms had been increasing, I anticipated the news from my Pittsburg doctor might not be good. I had already scheduled a “second opinion” appointment at Bruckner Oncology, New York City, for the next day. Bruckner has received some degree of fame for tackling many cases of advanced cancers for which patients had often been told there were no more options. They use a multi-drug chemo cocktail of up to six drugs, with dosages and the exact drugs specifically tailored for each patient. Bruckner’s chemo is given over the course of a perpetually grueling schedule, two days every two weeks, in their Bronx clinic. They believe that this multi-drug approach can overcome cancer drug resistance where it had developed previously, and that their combinations provide a drug “synergy” that can be much more effective than use of one or two drugs alone for advanced, aggressive cancers. Since they have had few clinical trials proving the efficacy of their work, they have been under some degree of criticism by conventional oncologists, who believe this approach unproven and possibly even dangerous. But, for many patients who have run out of options offered by their “conventional” doctors, Bruckner has often (although certainly not always) provided an extended time of functional living. Advanced ovarian cancer, a difficult to treat cancer with less than a 30% chance of 5-year survival rate for the Stages III and IV in which it is typically diagnosed, has become one of their specialties. While Bruckner’s approach cannot be considered curative, it may extend the life of a patient to the extent that they might be able to avail themselves of newer effective therapies as these appear.

At Bruckner, I met with one of the oncologists, who used the term “aggressive treatment” several times during the course of our conversation. I felt this term more in line with the treatment I sought, rather than the “palliative treatment” I would be offered locally. When I asked if he thought Bruckner’s treatment would help me, he paused for several seconds, and then carefully replied that it is much more likely to be successful than the one or two-drug approaches that I may receive elsewhere, a response that I knew offered no promises. Knowing I was in a dangerous situation, I liked his honesty much better than the sugar-coated palliative approach that I had been offered just the day before.

In discussing my decision with my local team, they were very understanding. They agree to be there as an emergency backup, such as if I needed to be locally hospitalized again, but will be stepping into a secondary role at this point.

In retrospect, one of my mistakes had been to implicitly trust the local oncology team, along with my Pittsburgh oncologist, and to think I needed to look no further for care that would I felt would fit my needs. I had believed they had my best interests in mind and would always treat me aggressively for as long as I wished, which proved not to be the case. Certainly, there are many more aggressive conventional therapies that I could have been offered. I had only “failed” four drugs total, not a huge number. Why are we seeing a swing towards recommendation of “palliative treatment only” for patients such as me, patients who value life – even under the duress of advanced cancer – and want to keep fighting?

Perhaps, some doctors feel they are being kind and compassionate in sparing the patient the often brutal side effects, and possible diminishing returns, of additional harsh chemotherapy treatments; I suspect that was the case of my Pittsburgh oncologist. Certainly a palliative care approach followed by hospice–for patients with comorbidities or advanced age—may be a kinder, gentler treatment plan. But does that make it the right approach for every advanced cancer patient?

I’ve also read where, in many cases, managed care has something to do with these clinical decisions as well. Many health administrators believe by freeing dollars from expensive, difficult-to-treat cases (as I might be considered), this money would be better off being used for those cases with a better prognosis than mine. Despite my Catholic upbringing, I never did aspire to martyrdom, so I will leave it to others to make their own health care choices based upon a higher moral or social compass than what I possess. As for me, I just want to live, and still make my choices accordingly.

Margo

• Posted in: end of treatment
• Tagged: aggressive treatment