You only die once

Chapter 8B The caring family, the choice, 'the cancer'

Chapter 8B

The caring family

Recently, a family approached me to take over a patient from another hospital. He was critical there. He was older than me (so, considered old 😂) and had suspected blood cancer. He was having an infection, breathless with liver and kidney failure. His doctors had given him a bad prognosis.

I, too, concurred. I said there was little point coming over. The chance of survival is slim and the cost will be high. Somehow, their sincerity and the 'emotions' (called it love) in their eyes made me unable to refuse. I clearly said that even if he survives in the short term, with his bad illness, the long-term prognosis is still bad. Anyway, with intensive care, dialysis and medication, he survived. I still don't know the long-term outcome but it is looking better and better. To a caring family, the extra time measured in months instead of days has been rewarding. Later, I was to find out that he managed to attend his son's wedding and that was a big bonus to the family and him.

The choice

She was a bit younger than me. Had grown-up children. Able to afford treatment for her cancer. But the cancer was advanced. At this late stage, cure is seldom possible, though the occasional patient really beats the odds.

So, we followed the book without hesitancy. Gave her standard recommended therapy. She responded and went into complete remission. She was well. All signs of cancer from scans and blood tests were negative. Accordingly, treatment was stopped as she was in remission.

Within three months, her cancer markers crept up significantly and cancer was seen in her scans, although she felt well. She was given second line therapy and again went into remission. At this stage, she had her cancer for one year. I offered her standard maintenance therapy with known side effects. She declined. Again, just after three months, her cancer recurred. However, although the cancer was seen in a few places, the total volume of disease was small. She was already beginning to be depressed. Patients are clever. Knowing that her cancer kept returning, her chances further down the road cannot be great. Her request was to preserve her wellness, didn't want hair loss unless there was absolutely no choice, and to be able to travel.

There was a window of opportunity here. I considered giving her therapy that only my mentor of 20 years mentioned to me. He had an elderly patient whom he gave only oral therapy who survived for two years. She had some cancer, felt well, and was not keen at all for toxic therapy. She decided to try that medication (long forgotten in guidelines). I had used it for an elderly patient with considerable success. I had sort of thought it was just worth a try for a month or two and see. It is now three years and counting. She was on and off the medication for the past three years. I really don't know how long it will last. I pray it will be forever. It has already exceeded any expectations with current known therapies.

I can well relate another few more patients who have benefitted from simpler medications rather than standard therapy. But evidence would be lacking. Sometimes there was no choice as they could not obtain or afford the current medications. Sometimes, because of the side effects of current standard therapy, you just can't give it. At times, with low volume disease, there is a window of opportunity to use the medication and achieve responses deemed near impossible. But there are always failures. Patients who respond less well or don't respond at all.

'The cancer'

This patient was interesting. At times, I see patients before they are fully confirmed to have cancer.

She was my age, single, and cared for by her siblings. She had been having bowel symptoms for years and said to have an irritable bowel. She was treated in a developed country, although she resided in a neighbouring underdeveloped country. She was in another hospital in my city for more than one week being treated for advanced cancer. They were friends of a colleague in my hospital. So reluctantly, I took the case. She was on IV morphine for her pain, IV drips, and was told to return home as she had bone secondaries. Only palliative care was offered.

I regretted taking over the case. She had loss so much weight. She weighed less than 30 kilos. She already had contractures in her lower limbs and just touching her would make her scream. Her ankles were swollen. She needed oxygen. Her heart seems to have failed. They showed me X-rays that showed a lesion of about 1.5cm in the right lung confirmed with CT scan. What are her chances? This would qualify as 'a few strands of hair left' soon.

I was in a bit of bad mood on that day. Faced with this transferred in patient, I was really not up to it. Anyway, as any doctor would, I retook the history of her illness, dating back to the last few years. Something did not fit. Advanced cancer to the extent of being just bones, eating her energy away, causing her heart to fail, yet the only thing pointing to cancer was the 1.5cm lesion in her lung.

After a night's sleep, it all came together after I re-looked at her blood tests, X-rays, and scans. She may have cancer but she certainly wasn't dying of cancer.

She was literally dying of malnutrition. It all suddenly added up. She was predisposed to malnutrition from her irritable bowels and had been on a special diet and had weighed about 36kg before her illness. Upon discovering her lung lesion, she and her family panicked and returned home because the doctor said she had cancer. A death sentence. She had no faith in modern EBM medicine and went the traditional nutritional way. She was kept away from cancer-causing and aggravating foods. She lost weight and became weak, so much so she couldn't walk. She was bedridden for two months. Since then, everything went from bad to worse. Her legs swelled, she lost appetite and finally agreed to come to our city for treatment.

She had severe protein energy malnutrition, most likely coupled with a bunch of vitamin and mineral deficiencies. Her pain was likely related to lack of Vitamin D and calcium. 'Adult rickets'. Her heart failure was possibly due to thiamine deficiency (beri-beri) and her low albumin didn't help the swelling either.

She was started on nutrition support. We had to slowly increase her calories and proteins. I declared I had next to no experience treating her condition. So did every doctor in the hospital. The only doctors who would be great probably are all dead or in Africa. In today's world, we would only find nutritionists and doctors caring for anorexia nervosa patients with such experience.

To cut the long story short, I had much difficulty convincing the relatives in the beginning. I told them every doctor has already been telling you she is dying from cancer. What is there to lose with just trying nutrition? In two weeks, she was discharged. With physiotherapy, she was walking again with a cane after eight months. Does she have cancer? I don't know. She refused to have a biopsy. However, in the following five years, the lesion did not progress. In the sixth year, there was some increase in size. I prodded her and her family that it may be time to look at that more seriously. That was the last I saw of her. I do hope it was not cancer. If it was, it was growing slowly.

She wasn't dying of cancer but of malnutrition.

There have been two other cases that I have encountered where overzealous diagnoses of cancer had occurred. Rare but it does occur.

To me, every stone should be turned. As many (different possibilities) differential diagnoses should be considered as a life depends on it. But it can really drain all of one's mental strength.

In each of these cases, a decision was made in the best interests of the patient. As it turned out, it would seem they were the correct decisions. However, the outcomes could well have been negative.

We act in the belief that it is done in the best interests of the patient. We (or at least some of us) cannot subscribe to the notion, 'It is better to die of the illness than the treatment.' When death is inevitable, this is accepting death when there is no viable treatment. When treatment is available, though complicated and fraught with danger, we have to make a conscious decision with the patient and their family whether to proceed or not. 

Stay tuned for Chapter 9. As the end of  this mini book is near, I have run out f near death episodes to relate. It becomes more serious and possible a bit boring. My apologies in advance but I do think it will still be worth your while.