Introduction and my kidney cancer story

In June of 2014, a year and a half after my first child was born, I went back to my obstetrician and asked when the troublesome uterin fibroid I had was ever going to go away as she said it would. Well, it wasn’t a fibroid, but a grapefruit sized tumor on my right kidney.

A few weeks later my right kidney was removed at the University of Minnesota Medical Center. (Through my c-section incision, easy!) The pathology report showed the tumor appeared fully contained to the kidney. It was clear cell RCC, but I don’t remember the grade. My doctor punched the pathology numbers into a calculator and it said 73% chance of ten year survival. Not too bad. He said, given the size of the tumor, he expected much worse. He recommended monitoring. I had a year of alternating CT and MRI scans every three months, then every six months. After nearly three years of clean scans, my doctor said, “See you in a year!” I spent the next year living life taking care of my then two young kids, almost like nothing had ever happened.

Well, my most recent CT in May showed two liver lesions, an inch each, a couple of 2-5mm spots on my lungs, and a small spot on my pancreas. I had a liver biopsy of the accessible lesion, the other is high on the dome, near the diaphragm/lungs/heart. After a long week waiting for the results, I got the bad news it is metastatic kidney cancer.

My kidney doctor referred me to an oncologist here at UMMC. He said my risk category, given my age, health otherwise, and type of kidney cancer would be considered "favorable risk," and I am likely to do well with treatment. He said people that respond well could expect to live “years”. He recommended waiting for a clinical trial of IL-2 and Nivolumab that is set to start here in the next month or so.

Since I had time to wait, I asked my kidney doctor to refer me to someone else for a second opinion. Turns out, that doctor is head of the trial! Dr Shilpa Gupta recommended not waiting several weeks more for the trial, but to begin treatment sooner. She said the trial is such that I could still have it as an option later. She went over several options, two immunotherapy options— high dose IL-2 or ipilimumab in combination with nivolumab*, or a pill, cabozantinib.

*The doctor’s description of the protocol does not sound like this recent FDA approval, but it must be similar. I am pretty sure she said four rounds of just ipilimumab, once every three weeks, followed by nivolumab once a month. I messaged her late last week asking for clarification, but have near heard back yet.

My son will be two in August and my daughter is five-and-a-half. (She’s about to start kindergarten in late August!) I’m a single parent, there is no other parent. I decided to become a mom pretty late in life. I, of course, want to find a way to be here as long as possible. I had hoped to see them through college, at least. So, as I try to research and choose between the options, I struggle to balance quality of life now, with chance of longer life!

It’s been nearly two months since my scan. I’m nervous to get the next, baseline before treatment scan. I am planning to get started in early July. (I not only have to make a treatment choice, I need time to wean my son! Poor thing is getting the ten days to no num-nums experience.)

As the trial or just standard IL-2 would require a lot of hospital stays, I am looking at the ipilimumab/nivolumab versus the cabozantinib. I’d appreciate hearing about others’ experience with either.

Thanks for taking the time to read all this.