This month, we have had the opportunity to share some remarkable RCC survivor stories revealing the depth and breadth of the patient experience.
We are grateful to all of the patients and caregivers who participated in this effort. Your stories provide a rich and honest narrative of the patient experience, reminding us that kidney cancer is not one disease and that experiences vary for so many reasons.
Global Voice: Our patient communities comprise a worldwide population representing over 30 countries spanning five continents. This month we shared stories from six different countries, including the United States, Australia, Canada, Germany, Italy and Denmark.
Rare Subtypes: We heard from patients with papillary RCC, chromophobe RCC, and even a super-rare case where classification has been debated among the top experts in the field.
All Stages: Twenty people shared their stories about surviving with stage 4 RCC – including multiple people who have been living with the disease for over a decade. We also featured stories from a patient who was misdiagnosed with kidney cancer, a patient managing anxiety from active surveillance, and a patient preparing for surgery the next day.
The highs and lows: This month we heard from patients expressing frustration, anxiety and anger. We heard from a patient on how connecting with others helped lead to an amazing outcome. We heard from patients who are combining lifestyle changes with evidence based care to improve their outcomes.
Remembrance: We heard from a young man who is honoring his beloved aunt by creating a brighter future for others.
Thank you to everyone who shared, listened and learned this month.
March may be over – but our work is not done. We will continue to provide a platform for patients to be heard. Every Voice Matters!
Highlights from our March Patient Voices:
“As a cancer patient, one area where I would like to see the medical community do better is to integrate diet and other aspects of wellness with traditional treatments like surgery, radiation, chemotherapy, and targeted therapy. I believe in traditional treatments but I feel like they might be more effective if combined with latest findings from research into diet, meditation, sleep, etc.”
-Eric Smith, ten year survivor of stage 4 RCC
“The hardest thing that I’ve had to hear is that I may only have 5 years to live. Although Chromophobe RCC is less likely to metastasize then other subtypes of renal cell carcinoma, the lack of knowledge of this rare subtype and lack of treatment guidelines make it a difficult disease to treat.”
-Catherine Yutmeyer, stage 4 chromophobe RCC survivor
“When I called back and questioned the PA (I was never able to talk with the doc when I called) she said you can ask the surgeon about it all when you go for the procedure! That was enough for me so I decided to get a second opinion…”
– Dez Burton, localized RCC survivor
“We lost everything… our business, our savings and now have to sell our family home. Everything that we worked for is falling apart.”
Evelyn Gebele-Baker, caregiver to her husband who is a stage 4 RCC survivor
“Long of the short, asking a doctor questions shouldn’t resort in an argument where the doctor asks if you have a medical degree.”
Larry Garza, stage 4 RCC survivor
I am so incredibly grateful for my cure team and the surgeries and treatments that have been available to me. But you should know that I didn’t depend on those things solely. These are things I can control: my nutrition, my activity/lifestyle, my attitude.
Carie Gort, stage 4 RCC survivor
“I have been blessed with good results and many prays answered. I hope these stories will help other going though kidney cancer.”
Robert Grizell, stage 4 RCC survivor since 2007
“Now I’m a year out and have lung nodules and quite frankly I’m scared sh##less to put it bluntly, also I feel mad and cheated.”
Doug Barrick, stage 4 RCC survivor
“Biggest piece of advice is to not beat yourself up and wonder why or how this happened. Always look up and look forward knowing that there are great treatments, even if it’s just to maintain where you are. And even if something isn’t working right now, that may change in a month with the latest trials and approvals.”
“My advice to others: Find an RCC specialist as soon as you can, if you can travel to MDAnderson for care, do it. My experience there with Dr. Tannir and his team is that they are second to none!”
Jesse Jacobus, stage 4 RCC survivor
“I am comforted by the advances that have been and are still being made in new treatments for RCC and pray for the researchers and doctors who devote their lives to finding better ways of fighting cancer. For now, I plod on knowing that it is all part of God’s plan.”
Tom Stark, stage 4 RCC survivor
“…living with cancer is like a rollercoaster: even after the lowest low, there will be a way up again. After each difficult period, there will come better – even great – times again. There is still so much more life to be lived and enjoyed despite cancer. Laughter will return, happiness will return, and even some lightness.”
Julia Berger, stage 4 RCC survivor
“I have accepted that “darkest hours” will be an ongoing part of my life. Its painful, but not dangerous. Luckily, I’m able to leave the dark afterwards. I do sometimes still long for the hopeful glitter-light to hit me.”
Bennedikte Sogaard-Pederson, stage 4 RCC survivor
“…I am waiting to meet with my urologist to review the results from another CT Scan. I have settled in my mind that I want to proceed with the surgery. Needless to say, the past 18 months have been filled with overwhelming emotions and anxiety.”
-Clive Hodson, On active surveillance for a small renal mass
So now I live quietly alone, proud of what I have done with my life… trying to laugh at everything and anything. Luckily I love black humour …If you didn’t laugh you’d cry…right!? Final advice?….if you smoke, give up now….today…..forever.
-Marg Healy, stage 4 RCC survivor
“My advice to anyone on this road is DON’T GIVE UP, NEVER LOSE HOPE. Do all you can, get at least one other opinion, and don’t settle on a doctor who you’re not comfortable with.”
-Bobby Taber, stage 4 RCC survivor
“My official diagnosis is an is unclassified oncocytic neoplasm, metastatic RCC. My case is rare and I’ve been told by my specialists at MDAnderson, there have only been two other documented instances of it. So it leaves us with a lot of unknowns.”
-Katie Coleman, stage 4 RCC survivor
“Connecting with others in the KCCure 1-2-3 group has been an incredible and vital tool on the road to recovery, rebuilding, and reinvention. The stories we share, the advice we give, and the cyber shoulders we provide to one another so that we may cry and be vulnerable are all essential.”
-Ryan Scarlatta, localized RCC survivor
I started reading patients stories on Facebook and blogs with successful ends in their health profile … patients who had a complete response to immunotherapy. I read these stories, read them again and again … until I identified myself in them. I was scanned 02.04.21 and MRI three days ago and received the incredible news from my oncologist: Complete Response!
-Silvia Stangalini, stage 4 RCC survivor
“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.”
-John Ferrell, stage 4 RCC survivor
“Doctors should work harder to have more diagnostic certainty before recommending an invasive procedure that will change your body forever. … My advice to others is to ask lots of questions. Be your own advocate. I’m glad it wasn’t RCC, but doctors need to decide what to do with this diagnosis before butchering you.”
–Lori Evans, diagnosed with RCC, but following surgery learned it was an oncocytoma
““Be still and know” has been my theme! We serve a BIG GOD and I’ve learned to live life to its fullest, love God and love others! Thanks to my wife & 3 children, my family, faith, a positive attitude and lots of prayers my faith has been strong and my Father has been glorified and I feel great!”
-Dan Lampinen, stage 4 RCC survivor
“With a wonderful support team, and the help of the good Lord, I surpassed the two years that I was given and now am starting my fifth year. I have advocated for cancer research funding and I urge you to do the same. They did put a man on the moon, but still haven’t found a cure for cancer. I pray they find it in my lifetime.”
-Debbie Talcott, stage 4 RCC survivor
“Connecting with other patients in the KCCure 1-2-3 community helped with one of the hardest parts of this diagnosis: waiting for surgery. Even though we know we’re in great hands … I won’t lie, the anxiety of knowing this tumor is in my body is tough.”
-Chris Jones, localized RCC survivor
“Throughout this all, I can’t say I haven’t asked the doctors “How much time do I have?” They usually respond with “We just can’t answer that. Without treatment probably not long. With treatment you may have many years.””
-Steve Block, stage 4 RCC survivor
“…Dr. Ball was able to remove 19 tumors from the right kidney, once again preserving his kidney function….Did we really almost remove both of my husband’s kidneys unnecessarily?? Thanks to the amazing NIH Urologic Oncology team, who specialize in rare kidney cancers, I’ve learned so much since that fateful day in October when an email message told us my husband has cancer.”
-Tracy Titus, caregiver to her husband Branson, papillary RCC survivor
