Patient Stories

Brian Rini, MD is a professor of medicine and chief of clinical trials at Vanderbilt-Ingram Cancer Center (VICC) in Nashville, TN. He is a key opinion leader in the clinical investigation and management of kidney cancer. In honor of Kidney Cancer Awareness Month, Dr. Rini shared some of his views on where the field is today and what we have to look forward to in the future. KCCure: What is the most significant advancement you have seen in the last decade for the treatment of advanced RCC? Dr. Rini: The most significant advancement has been the development of Immunotherapy (IO) based doublets as front-line standard therapy in metastatic RCC (mRCC). These have led to significant overall survival advantages over sunitinib (Sutent), prolongation of progression-free survival/disease control and...

KCCure is a proud member of the International Kidney Cancer Coalition (IKCC), an independent international network of patient organisations that focus on kidney cancer. Learn more about Marta Szulc, IKCC’s new Executive Director. Tell us about your new role and a little bit about the mission of the IKCC. I was appointed at the beginning of February as the Executive Director of IKCC to pursue the organisation’s mission of reducing the burden of kidney cancer worldwide through initiatives and collaboration with Affiliate Organisations, healthcare professionals and the global kidney cancer community. What brought you into advocacy? The conviction that the world can be changed for the better and that we can only do it if we are doing it together.  What are you most excited about in terms...

The first 60-odd years of my life were notably free of health concerns.  Some sinus issues and headaches associated with them, but nothing that caused me to be hospitalized or receive any sort of medical treatment to speak of. I had my first surgery ever in 1984 (age 36) to remove huge bunions from both feet. Otherwise, nothing to speak of. I smoked from my teens until 1984 – the surgery kept me in the house for three weeks which was enough to end that nasty habit – not one smoked since then. I enlisted in the Air Force right out of high-school in 1965 at age 17. It was either that or be drafted and shipped directly to Vietnam. I was trained in aircraft radio repair and spent two years in North Carolina and a year in Thailand and Vietnam. During those years (the last three, anyway) on an a...

On June 25th 2018, a 16cm malignant tumor was discovered by chance on my left kidney: I had just turned 47 years old. Our family had relocated from Los Angeles to Munich, Germany, just 10 months prior, and our life in Germany was still new to us: Our kids, 6, 9, and 11 at the time, were about to complete their first year of school here, and we had all been looking forward to an easier, more settled second year in our new home.  What I remember most about the day my world fell apart, is not so much the shock and disbelief that came with the diagnosis, but the “Todesangst” (fear of death), that hit me immediately. My very first thought was of my children, of me having to leave them behind, and of them having to live a life without me. This fear has not let go of me ever since. I hate the fac...

Bennedikte is a stage 4 kidney cancer patient in Denmark. She shares her thoughts on ‘hope’ and survivorship. Fourteen months ago I found a big bump on my neck, and was diagnosed with kidney cancer that had grown into the liver and spread to the lymph nodes and bones.  So instead of being a healthy 48 year old woman, I am now a stage 4 cancer patient doing life-prolonging treatment. I’m married, have 3 children and worked as a teaching nurse, specializing in psychiatry. Physically, I don’t have major issues from the cancer yet. My treatment has been ipilimumab and nivolumab, and last week pain-relieving radiation on the metastases on the neck. Now I’m preoccupied with “having a lovely life while I die,” and especially thoughts of hope and acceptance have fille...

Clive shares his story of being diagnosed with a small renal mass while undergoing treatment for prostate cancer. Together with his doctors, Clive decided that active surveillance was preferable to immediate surgery. In January of 2020 my wife, Michelle, suggested that I take up painting to ease my mind. Michelle has been involved with acrylic painting as a hobby for many years. I decided her suggestion was a good one but I wanted to go in a different direction. So it was that I came home from the store with watercolour paints and paper.  I have to admit that my initial attempts at painting were crude. The results were far from inspiring. I discovered that watercolour has a mind of its own. It can be a challenge but the process can be very rewarding. When you are absorbed in a paintin...

I was diagnosed in February of 2017. I had a radical right nephrectomy. I was told it was stage 1 with clear margins, no further treatment necessary.  In June of 2018, I went to the doctor for lower back pain. They found a large tumor on my right iliac. After a bone biopsy, I was told I had stage 4 RCC with metastasis to my iliac, lungs, left adrenal, sternum, and a few other spots that I can’t even remember at this point. I was referred to an oncologist who told us there was no cure, but there were ways to fight it. He gave us the options and explained the risks that each option carried.   He felt like immunotherapy was a great option for me, but also recommended I go to MDAnderson for a second opinion. Immunotherapy was the route I chose after deciding to be treated through MDAnders...

I’m a 29 year old newlywed with a brand new stage IV kidney cancer diagnosis, hot off the press! Some call my case the Loch Ness monster due to the super rare nature of my subtype but we’ve named the tumor on my right kidney Newman – he’s a big fella (12cm)! It’s been a rough couple of months that’s often felt like pure torture at moments, waiting for my treatment plan and not knowing how aggressive my tumor is. When most people are diagnosed with cancer, many get surgery or start treatment right away. Because Newman has been such a stubborn one to classify, we’ve had major delays. My case looks and stains exactly like an oncocytoma, a benign renal growth that doesn’t metastasize. However, mine has spread to my liver which confirms it is indeed cancer and that I am stage IV. My offic...

I’m feeling a lot of things as I lie here wide awake thinking about this exact moment last year. It was the eve of my partial nephrectomy. My husband was asleep next to me, and my mom who flew 1,100 miles to be by my side was asleep in the next room while I remained awake (as I am now). One year. I’ve made it a year! A truly bizarre, startling, heartbreaking, stressful, but unexpectedly accomplished year. Recently, I exchanged a message with another kidney cancer survivor, discussing how unique our perspective of 2020 is compared to friends and family.  In many ways I feel strangely blessed to have started the year with a cancer diagnosis. It put me in a position of strength as I was able to look through a different lens: It helped me to focus on what I have and not what I don’t have....

Silvia shares her story of how treatment with Nivolumab and Tivozanib resulted in a complete response of her kidney cancer. I never thought I would be sharing this when I was diagnosed with Stage 4, Grade 4, clear cell renal cell carcinoma with sarcomatoid features February 16, 2018. The tumor was 7.5 cm and I had mets to one ovary, my liver and both lungs. After 5 months of Afinitor +Lenvatinib I had progression in my lungs, abdomen, pleural effusion, and above all the peritoneal carcinomatosis with a huge amount of ascitic fluid in my abdomen.  In December 2018 I started the combo Nivolumab + Tivozanib (I live in Italy). I was treated with 11 cycles of Tivozanib and then monthly Nivolumab. It has been a long and hard journey…  I was hospitalized three times. I saw de...

Deciding whether or not to get the COVID-19 vaccine is something that many people struggle with – but the decision is even more difficult for kidney cancer patients. I was originally diagnosed in 2010 with Stage III Clear Cell RCC and had my right kidney removed. My cancer returned in 2017 and metastasized to my lungs and pancreas.   I started in a clinical trial right away and left the trial in 2019 after achieving a complete response. A new spot appeared on my lung at the beginning of the COVID shutdown in 2020 and we successfully treated it with SBRT. As of today there is no evidence of disease.  When the vaccine came out, I was a little apprehensive since I still have a lot of stuff going on with my immune system from the trial. I didn’t want to introduce new drugs int...