Postby Val*pal » Thu May 28, 2015 8:11 am
In my opinion, based on three years of dealing with oncologists, it is almost impossible to get a straight answer from them.
However, I kind of understand why they are not straight forward. One reason is that it is impossible to predict how any one patient is going to respond to surgery and subsequent treatment. Another reason is that most oncologists are humane enough to not want to take away hope, that elusive but very necessary ingredient making life worth living. Sadly, an additional reason is that doctors do not know how to handle terminal or possibly terminal patients. They have not had adequate training to do this.
My husband's first oncologist (who left Michigan for sunnier weather in CA), was shockingly to the point. When Danny and I met him for the first time, I don't think he realized that we had not been given any info as to the cancer staging. Danny had almost died following his colon resection, had been hospitalized for 7.5 weeks, and was still somewhat weak and down for the count when we met. During Danny's lengthy hospitalization, the focus was on his survival; cancer prognosis was not top of mind. So when we met with this first oncologist, he cut to the chase. He informed us that Danny was Stage IV (based on much lymph node involvement and some evidence of cancer cells within the fatty abdominal wall) and though no mets were seen in liver or elsewhere at that point, he knew that based on the fact that the tumor had eaten through the colon wall that there were cancer cells afloat within the abdomen. He told us that it would show up either in the liver or in the peritoneum, and that he predicted that Danny had about 2.5 years. I immediately broke down crying and the oncologist suddenly seemed to realize that this was news to us and though he didn't back pedal on what he'd said, he immediately focused on what could be done - chemo.
I now realize this doc should have started the first consultation by simply asking us to explain what we knew about the situation. That would have easily given him the orientation he needed.
When Danny was assigned a new oncologist after the initial one left, we found the second one to be much less in-your-face. As time went on, I realized that she was always honest, but phrased bad news in ways that were not shocking; however, if pondered, these phrases revealed the reality. For example, I remember her saying repeatedly that chemo was not a cure but would slow progression. Danny never asked specifically what that meant, but I came to realize that he was at the mercy of the chemicals slowing the growth. If it didn't work, then . . . there were no alternatives. Later, she informed us that Danny was on chemo for life, and I understood what that meant as well. Since Danny never asked about prognosis, I don't know if these words really sank in. I do know that he seemed to continue to believe (despite the doctor's repeated message) that the chemo could cure him.
In the end, when the doctor finally acknowledged that the chemo was no longer effective and doing more harm than good, I sensed her distancing herself from Danny. She spent less time with him and let the PA do most of the talking. Danny later told me that he felt she had washed her hands of him. It was painful for both me and Danny.
All I can say is that oncologists really need to be trained thoroughly on end of life consultations. I don't believe Danny's oncologist was an uncaring person; instead, I think she tried to handle it as best she could but that the emotions were overwhelming for her as they were for us. Handling this badly just made the whole situation sadder.
I do know one thing. I never forgot what that first oncologist told us. Though it had been shocking news to me, it left no room for doubt. It helped me frame the next two years in a realistic way and helped me interpret the less blunt words the second onc used. Danny died 30 months after that first consultation.
I simply don't know what is the best way to deal with cancer patients. Though I appreciated the honesty as a caregiver so that I could prepare for what to come, I don't know if I'd want the whole truth if I were the patient. There always has to be room for hope or life becomes too burdensome. And - as the many stories from this board reveal - some Stage IV people live on and on and do very well, so it's impossible to know what is in store. My Danny just happened to fall within the statistics of what is most likely to happen, but not all cancer patients do.
I suspect that most oncologists will be very honest if pressed, but most patients and caregivers are too afraid to press for specifics. I know I was.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest