the history and the mystery

So this is my post about my diagnosis and stuff.  I’m going to write from memory and without medical terms, as much as possible.  Skip it if I’ve already told you this story…

In June of last year I noticed small amounts of blood in my urine.  I was prodded to make an appointment with my GP, who gave me a requisition for an abdominal ultrasound.  She wanted me to go for the ultrasound the next day, but I put it off ’til the following week.  I assumed I was maybe going to pass some kidney stones.

My GP’s office called me back in.  She showed me the ultrasound report, which focused on a large 9 cm mass in and partly outside my right kidney.   Nobody said the word ‘cancer’.  She wanted me to go into emergency for immediate treatment; but after a phone call to the Civic, said she would refer me to a urologist.

I saw the urologist July 7.  He said my mass was probably cancer.  We talked about an operation, and he booked me for day surgery for a scope to see if the urethra was affected. July 18th I took the bus from work to the hospital for the scope.  That night I spent awake in pain. The next day I had an abdominal CT scan and the pain from the dye along with the effects of scope led my brother to take me to emergency.  I stayed overnight in hospital; went home; and then went back to emergency and stayed at the Civic for a few days.

I spent the rest of the summer of 2012 moving as little as possible.  Anytime I walked more than 1/2 block I would have writhing pain followed by passing lots of blood.   Finally on August 27th I had surgery to remove my right kidney.  The surgeon also removed a batch of nearby lymph nodes to test for cancer.    I was in hospital for about a week recovering from the surgery.  When I went home I was still having lots of trouble with nausea.  I again ended up in emergency for the day to deal with that.

In September, I saw my surgeon for follow up.  He told us that there was no evidence of disease in the nearby lymph nodes.  He also suggested that I consider enrolling in a clinical trial for people with largeish tumors who have no evidence of disease following surgery.  I asked for the referral.  We went for ice cream to celebrate the news.

In October, I saw the oncology team to discuss the clinical trial.  Prior to joining the trial, they told me there was a series of tests I would need.  I went for an abdominal CT as well as a chest CT.    When I returned to see the oncologist, she said that there were a number of nodules in my lungs, and there was a possibility that these were metastases.  Due to this, there might be some difficulty entering the trial (which required no evidence of disease).

Notwithstanding the nodules, the drug company approved me for the trial.  I took a drug with the Seussical name Pazopanib (it’s also called Votrient) from November until March.  I had all the usual side effects.  The side effect that brought my twirl on the Pazopanib whirl to an end was that my liver did not tolerate it, and began behaving dangerously.  Even after a break from Pazopanib, my liver immediately cringed and reacted again once the medication was restarted.    Worse, all the side effects had not come with an ‘effect’; my March 2013 CT scans showed that the nodules had increased in number, and in size.  I definitely had metastasized kidney cancer, and Pazopanib had not helped.

After two months to give my liver a break, and to reflect on my mortality, I began taking the standard first line kidney cancer drug, Sutent, at the very end of June 2013.   I’ve had the usual side effects from Sutent, but overall it appears to be treating me better than Pazopanib.  I will find out in early October whether it is helping me any better than it’s P cousin.  Watch this blog for scan-itis posts, and watch me for scan-itis, in late September.

Meanwhile…here’s the data.    Kidney cancer is ‘staged’, or risk-assessed, based on something called the TMN system.  In this system, what is considered is:

-size and location of T for Tumour (under or over 7 cm, and whether it’s gone outside your kidney);
-whether it’s gone to nearby lymph N for Nodes;
-whether the cancer has M for Metastasized anywhere else in your body.

If kidney cancer has M for Metastasized, then no matter where you are in the other letters, you are Stage IV.     (this is my category)

Researchers at UCLA have added predictive factors for length of survival time, to an assessment of people with metastases.   They look at high blood levels for LDH and calcium, anemia, 2+ metastatic sites, <1 year from diagnosis to metastatic treatment, and poor performance status (essentially your ability to do activities of daily living) as giving higher risk of low duration of survival.    If a person has zero or one of these factors, they are a low risk; 1-2, an intermediate risk; 3 or more, a high risk patient.

Since I had high calcium, anemia, and less than a year to metastases, I am an intermediate to high risk patient.

Median survival times for low, intermediate, and high risk patients, are 76, 25, and 6 months respectively.  Time starts when the possible mets are first detected, which would be October 2012 in my case.  So (wheeeee!) I’ve already surpassed the 6 month median for high risk patients, but (boooo!) I’ve used up nearly half of my intermediate risk time.

Sutent generally provides patients with some shrinkage (40%) or stoppage (40%) of tumours.  It usually works for people for about 10 months’ time, before it stops working on their tumours or else has other effects on their organs that means they need to stop.

Doing the math, my average time as an intermediate patient could be December 2014, or could be October 2015 if Sutent turns out to be helping me out.   Here’s hoping.

 

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One Response to the history and the mystery

  1. Sue Watson says:

    My dear lovely Mary – I am not surprised by the brevity in your approach to this diagnosis/reality – it is very Mary-like. I want you to know that we never stopped loving you even though stupid shit got in the way, as it too often does. Here’s hoping for the 76 month gift…

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