Fifteen Minutes

I think it's important to understand that I will continue to have new tumors. It's the nature of my treatment.

Five or six-years ago a new chemotherapy was released to treat kidney cancer. Before this new chemotherapy there was basically no treatment at all. Without these new drugs I would likely not be here today.

But these new chemo drugs do not eliminate the disease from one's body. They are very effective at stalling growth, reducing growth, and sometimes even eliminating tumors completely. But they do not eliminate kidney cancer from the body. Eventually they just stop working.

After the first new chemotherapy drug was released a few others quickly followed. All are slightly different from one another, but basically the same. As a doctor explained to me, when something new comes out all the pharmaceutical companies like to jump on board.

The only way the doctor and I will know when a chemotherapy drug has stopped working is to study scans. Once tumors show that they're starting to grow again, rather than shrink, or when new tumors develop, it's time to switch to a new chemo.

So I don't get excited when new tumors are called out. It is the nature of the treatment. So far, with scans every three-months, all of my tumors have been caught at very small sizes. So far, switching to a different chemo drug, has had a very positive impact.

The challenge has now become followiing the complexity of my situation.

When a new scan is ordered it will inevitably show current areas being treated, as well as scar tissue that has already been treated. The only way to tell one from another is to study my history of treatments and comparing multiple scans to one another.

It's not happening, not without my personal involvement.

Radiologists and doctors work on a schedule. They are expected to produce so much in a certain amount of time. For example, most doctors schedule an appointment every 15-minutes. An appointment costs about $100. That's $400 an hour. Pretty good pay if you can get it.

With the complexity of my situation I'm no longer fitting into the scheme of things. I require more time.

I invest that time myself and then address concerns with radiologists and doctors so they'll invest more time as well. I'm very polite about it. The doctors do not get upset with me. But I believe that it may be written in my chart that I like to be very involved with my care. Seriously, I think it is.

We've finally decided that an MRI of my neck showed a growth in the T2 section of my spine, likely pinching a nerve, and causing the pain I've had in my right shoulder and right arm for more than a month.

I requested a copy of the MRI report and then compared it to a PET scan report that was done at the end of July. I request copies of all scan reports. I have a big folder full of them.

Well the T2 growth in question on the new MRI was also recognized on the PET scan from July. No one else noticed this.

What was the size of this growth in July compared to now? No one has looked at that.

Is this a sign that my current chemo is not working? Since the pain I've been suffering from is getting better does that mean that the chemo is working?

No one knows.

You really, really do have to be your own patient advocate and look after your care. Sometimes what you need doesn't just neatly fit into the 15-minutes that is being offered.

I won't proceed without everything being looked at and understood. It's what I have to do.

I hope other patients understand this as well.