Quantity or Quality of life

My quarterly scan is coming up, and with it comes stress and anxiety about the results. I think it will be fine. But how could I possibly know.

I have a hormone-producing neuroendocrine cancer that cannot be cured, but can be treated. Right now my treatment has two parts. One is about slowing tumor growth, in other words making an already slow development even slower. The other is about reducing the production of serotonin, which causes major problems with my digestive system, flushing, and heart palpitations. My treatment means injections every other week and daily pills.

On the surface of tumor cells there are small receivers called receptors. You can think of them as locks. The treatment works by using a key that fits into those locks.

The more receptors the tumor cells have, the greater the chance that the medication will attach and actually work.

Not everyone with neuroendocrine cancer has the same number of these receptors. Some have many. Others have few. I have a moderate amount. According to my doctors, that means it is not bad, but they would have wished for more. It slightly worsens the odds, in an already rather discouraging prognosis.

So far my injections have worked in the sense that tumor growth has slowed down. And that is of course very good. At the same time, I have a large tumor burden, many symptoms from the disease itself, and side effects from the medications. My life is therefore severely limited by illness. I am grateful to be alive, but living is often quite hard.

There will come a day when my scans show progression, meaning that the medications are starting to lose their effect. When that happens, I will be offered a targeted radiation treatment called PRRT.

PRRT is based on the same receptor principle. The radioactive treatment seeks out tumor cells that have these receivers on their surface. When it attaches there, it releases radiation that damages the tumor cell from the inside.

The same rule applies here. The more receptors the tumor has, the greater the chance that the treatment will be effective. If the tumor has many receptors, the odds are better. If it has few, the odds are worse. And if you are somewhere in between, like I am, the effect becomes more uncertain.

PRRT is not given to cure the disease.
Its purpose is mainly to slow tumor growth, sometimes shrink tumors, in some cases reduce hormonal symptoms, and for some people extend life.

How well it works varies greatly from person to person.
Some get a clear benefit.
Some get little or none.
Some feel better.
Some feel worse.

There is no way to know in advance which group you will end up in.

It is also not an easy treatment for the body. The radioactive radiation does not only affect tumor cells, but also other sensitive tissues.

Common side effects can include severe fatigue, nausea, effects on the bone marrow with low blood counts, effects on the kidneys, increased risk of infection, and long recovery time.

Some people describe the treatment as relatively mild.
Others as very demanding.

So why am I writing about this.

Because at its core, this question is an existential one.

For me, the choice is not about giving up or fighting.
It is about what the goal of treatment really is.

If the main purpose is to extend life, but the price is feeling even worse during the time I have left, then it is not an obvious yes.

My primary goal is not more months or years at any cost.
My primary goal is to feel better.
To be able to live.
To be present.
To not be constantly sick from treatment.

Considering how long I have had severe and disabling symptoms, and how poorly I actually feel, PRRT would likely already have been suggested if it were believed to significantly improve my quality of life.
The fact that it has not been says something too.

My life is about quality, not quantity.

Of course I want to live a long life. I want to see my daughter grow older and shape her own life. I want to continue being with my beloved husband, sharing everyday life and future dreams. I want to make room for things that are still beautiful, joyful, and meaningful.

But I do not want to live longer at the cost of being even sicker than I already am. I do not want to collect time if that time is filled with more nausea, more exhaustion, and less life.

Right now, it is more important to me to try to feel better than to try to live longer.

This is not a promise about how I will choose in the future. It is simply where I stand today.

And it finally feels like a choice that truly belongs to me.