Susan from Alberta, Canada, was diagnosed with stage 1 kidney cancer 12 years ago. In 2002, she lost her father and aunt to colon cancer. That difficult year didn’t prepare her for her own journey four years later.
Q: Tell us about your diagnosis.
A: September 18, 2006, less than one month before my 26th birthday, the day the word “cancer” came my way.
My symptoms started early June 2006. I generally felt unwell and had constant stomach aches and nausea. By the end of June, I was vomiting nearly all day long. I had seen doctor after doctor for seven weeks and had been told it was just a bad flu bug. I had lost 30 pounds. Finally, I got into see family doctor who said something didn’t seem right and sent me for an ultrasound. The day after my ultrasound, the doctor called me directly and said I needed to see a urologist. There was a mass on my right kidney and he didn’t know what it was.
A month later, on September 18, the urologist walked into the room, his eyes stuck on the floor. I squeezed my mom’s hand because I had no idea what was in store. The doctor held up the MRI X-ray and said “I want you to look at this.” He pointed and said there was a tumor on my right kidney that was 4.2cm by 6cm in size, about half of my kidney. I felt the blood drain from my face and everything after that is a blur, even now. My mom said that I looked at the doctor and told him “Get it out! Just get it out!” In that moment I found a strength and resilience I had never known before. All I knew was that my mom needed me; she had already lost two of the closest people to her, she couldn’t lose me too.
Q: What kind of treatment did you receive?
A: Two months later, on November 15, I had a radical right nephrectomy. A biopsy confirmed it was clear cell renal cell carcinoma and my doctor said I was his youngest patient ever with renal cancer. Because I had been 25 at my diagnosis, I had to undergo a lot of genetic testing to find out why I had that type of cancer. Two years of testing and it was concluded by the genetic counsellor it was “just a fluke.”
Twelve years later almost to the day, I am healthy, cancer-free, married and have a three-year-old son. I wait for the day when my son is old enough to ask what my scar is from; I will tell him it’s from the day God gave mommy a second life.
Q: What advice do you have for someone going through a similar situation?
A: 1.) Ask questions and record everything so you can remember what the doctor says. It will also serve as a journal for you down the road.
2.) Be kind to yourself. There will be bad days, hard days, but there will be many good days as well so enjoy those when they come.
3.) Let your close loved ones know when you are having a bad day, don’t keep your feelings to yourself. In my situation, I had to be the “strong” one for my mom and sister but at night, in secret, I fell apart and that was an unnecessary burden on me. I didn’t know how strong I was until being strong was the only choice I had.
12 Comments. Leave new
Susan, thanks so much for sharing your story. I was diagnosed this past spring at 29. Hearing your story of being diagnosed so young was very helpful to me. You gave me hope. Sending you love.
Liz
Thank you for sharing your story <3
It's a blessing to know you!!
I was diagnosed RCC stage I 6/1/18, had a partial nephrectomy on my right kidney on 6/27/18, and just went for ct scan on 10/22 and it was good. I felt i had no symptoms, mine was found when doing and ultrasound checking for something else,,, and then my journey began. I struggle with the constant fear it will be back, and I now, am trying to work my way though that. I too, feel I have to be strong because people rely on me, but there are days I feel as if I’m falling apart inside with anxiety and fear. It’s hard for people to understand the underlying anxiety you have after being told you have cancer,,,,, even with a successful partial nephrectomy, I’m still scared of the future. But I also think it just wasn’t my time quite yet and a God has a plan,,,, and I don’t want to waste it. Thank you for sharing your story,,,, it parallels mine and it was nice to know someone felt the same way I did…
I was 29 when I found my tumor and had a partial nephrectomy in 3/18. Last month, 8/19, they found two more tumors. They think that it is spillage from my partial nephrectomy. They wanted to wait 6 months to see if more grow but I am only waiting 3 months. Because I have went every three months for follow ups and I didn’t have cancer 3 months ago but now I do…
Debbie,
Thank you for posting. So glad for you that it was all clear! I have had two other types of cancers that are “surgical cures” , one in 2000 and another type in 2003. I, like you , had what they call an incidental finding during an ultrasound. After first an MRI and then ct scan w and w/o contrast it has been confirmed that I have a 2.7 cm solid mass in my right kidney. Stats indicate that 80% of these solid masses are RCC so have not agreed to the recommended ” biopsy” . I just want it out! Was wondering if you could share what size your mass was and whether or not your doctor recommended a biopsy first before the partial nephrectomy. Thanking you in advance for your time.
I too would like to know if a biopsy is a requirement. I just want them to take it out and then do the biopsy. Looking forward to hearing your response.
So glad to hear you are now cancer free. I just found out two weeks ago that i have a 5cm tumor on my left kidney. The doctor is sure that it is renal cell carcinoma but will not know until the biopsy. I am only 22 years old and just had my first child. This is a pretty rough place in my life and reading these stories are a way for me to gain hope for my situation.
When they removed the tumor did they remove the whole kidney too?
At an ER visit a doctor checked for kidney stones and discovered a mass on my kidney and told me to make an appointment with a doctor to have test done. I can’t afford health insurance and I don’t know what to do. I have no extra money for the Dr. visit and I’m so scared.
April, pray for a miracle to Jesus. Go to a County Hospital and they can treat you. I hope by now you are getting help. I prayed for you.
Thank God. At least one positive post about kidney masses, FCC, etc. Everything you Google is so negative no matter how you word your searches. I am not even identifying with this 5 cm “thing” they say I have on my left kidney other than it is an “attack” from the devil. I trust Jesus for help. Mine was found accidentally and was not even there a few years ago. So they want to remove the kidney. All these stupid medical sites keep saying it will come back most likely on some other part of your body within 5 to 10 years, if not sooner. Very discouraging. What we really need are more recorded stories like yours that give people hope they really can live a free life after this.
Hello everyone. Thanks Susan for sharing.
A little about me/my story..
I’m a 24 year old male. At the age of 22, an incidental lesion was discovered on my left kidney during a CT scan for an unrelated cause. This lesion caused no type of common symptoms such as flank pain, blood in urine, etc. At the time of my initial CT scan, the lesion was 1.4cm I believe. A year later, it grew 1.6-1.7cm and my urologist classified the lesion as a Class 2F on the Bosniak scale, the F meaning followup, which occurred a year after that (April 2019) where I had an MRI done which showed an increase to 1.8cm but by this point, my urologist reclassified it as a class 3 mass on the bosniak scale. (The higher the class, the higher probability of it being cancerous > benign. The scale is not dependent only on size, but on septa [walls] inside of the lesion as well, among other things as well). He told me I needed to get it resected and so I went ahead and followed through with it. (Since my lesion was small, surgery was my go to intervention, no biopsy)
2 weeks ago today, I had a robot assisted laparoscopic left partial nephrectomy with a mass that since April grew to a 2.1cm in diameter. The partial nephrectomy (standard for masses less than 4cm) allowed the urologist to preserve most of my kidney but still taking away enough around the mass to analyze for potential spillage/metastasis. The pathology report concluded that the lesion was clear cell renal carcinoma (ccRCC). The margins on the mass were, according to my urologist clean and free of metastasis. I will have follow ups for 3 years. At six months: routine labs (kidney func., liver func., etc) and an ultrasound. At one year: CT scan and another two for the follow years.
In regards to my recovery, I’ve been dealing with the pain quite well, some discomfort here and there but nothing too bad.
It has been quite a scare, though. I try not to read about the what if’s/postoperative information/stats online, but it’s a little hard tbh, i try to distract myself with other things. Given my age, this is extremely rare, but one must remain hopeful that with the proper intervention, everything will be ok. Definitely encourage, like Susan, to ask a lot of questions, do your research before going into the doctors office to have a list of questions lined up. If you’ve already went through treatment, don’t be too harsh on yourself, give yourself time to recover. It will take time and patience. And definitely keep your loved ones close if possible. There will be days when you wanna vent and others where you wanna be alone, and that’s ok, but definitely explain that to others around you. I pray that those of you going through treatment/being diagnosed get the proper care you need to allow you all to live long and healthy lives.
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