Real Patient Stories: How I Knew I Had Kidney Cancer
Kidney cancer is a form of cancer that begins in the two bean-shaped organs known as the Kidneys. Kidney cancer forms as a result of kidney cells beginning to grow uncontrollably.
The most common form of kidney cancer in adults is renal cell carcinoma. According to the American Cancer Society, approximately 90% of all kidney cancers are renal cell carcinoma. The main types of renal cell cancer include clear cell, papillary, and chromophobe.
Kidney cancer can be hard to detect as warning signs are slowly developing. Read on to learn about the early signs, symptoms, and diagnosis of Kidney Cancer from real-life patients.
What are Common Early Signs of Kidney Cancer?
Because kidney cancer begins to form on an internal organ, there are rarely visible signs of cancer during its early stages. Some of the early warning signs of kidney cancer include:
Blood in Urine (Haematuria)
This is the most common symptom of kidney cancer. While this might result from an infection, enlargement of the prostate, or kidney stones, blood in your urine is often a sign that your kidney is not functioning correctly.
I had blood in my urine. I was like, oh, it’s just some blood.
– Nina N. | Nina’s Kidney Cancer Story: Chromophobe Renal Cell Carcinoma, Stage 2
The blood stopped. I started feeling great. Didn’t think anything of it. About a week and a half later or two weeks later I saw more blood in my urine.
Kevin R | Kevin’s Kidney Cancer Story: Transitional Cell Carcinoma, Urothelial, Invasive
Extreme Fatigue
Most people who have kidney cancer experience an extreme amount of fatigue. This is different than feeling tired from not getting a goodnight’s sleep as it often persists and worsens over time.
The night before I actually went to the hospital, I was feeling super fatigued. I just had low energy.
– Rachel R. | Rachel’s Kidney Cancer Story: Renal Cell Carcinoma, Stage 2
Anemia
Approximately 21% of all people diagnosed with kidney cancer experience anemia, a low red blood cell count. A healthy kidney signals the body to make new blood cells. However, cancer cells can sometimes block the kidney from sending out the signals.
Alternatively, kidney cancer can also cause an individual to have too many red blood cells. The cancer cells produce a hormone called erythropoietin that signals the bone marrow to overproduce red blood cells.
Blood Clots
Certain types of cancer, like kidney cancer, put patients at high risk for blood clots. This is the result of cancer cells producing chemicals that stimulate the body to produce clotting features.
I was a nurse at the time and I started having these blood clots that I would pass. They were about the size of my pinky, so I knew that wasn’t normal.
– Nina N. | Nina’s Kidney Cancer Story: Chromophobe Renal Cell Carcinoma, Stage 2
I had leg pain that did not go away, so I went to my doctor…he dug up an ultrasound technician who verified the presence of a DVT (clot) in my leg. The danger of such a clot was that it could dislodge and go to my lungs and create a pulmonary embolism (fatal) or to my brain and create a stroke (fatal or debilitating).
– Bill P. | Bill’s Kidney Cancer Story: Papillary Renal Cell Carcinoma
Unexplained Weight Loss
A sign that the cancer spreads to other organs within the body is unexplained weight loss. As cancer spreads, kidney cancer patients often experience a loss of appetite.
Lower Back Pain
Individuals diagnosed with kidney cancer often experience lower back pain where the impacted kidney is located. The pain may be dull or sharp but is often persistent.
“I thought I had kidney stones. It was the typical pains in exactly the same place it would’ve hurt if I had had kidney stones.”
– Kevin R. | Kevin’s Kidney Cancer Story: Transitional Cell Carcinoma, Urothelial, Invasive
I was in so much pain. I’ve never had pain like that before. I was like, did my appendix burst? What’s going on?
– Nina N. | Nina’s Kidney Cancer Story: Chromophobe Renal Cell Carcinoma, Stage 2
Stomach pains – really sharp pains in my lower abdomen. Then there were shooting lower back pains on that same side.
– Rachel R. | Rachel’s Kidney Cancer Story: Renal Cell Carcinoma, Stage 2
What Tests Do Doctors Run for Kidney Cancer?
As with any medical diagnosis, if a doctor suspects that you may have kidney cancer, they will most likely ask about your medical and family history to identify any potential risk factors.
In addition, they will potentially prescribe one of or a combination of the following tests:
Blood Tests
While blood tests cannot confirm a cancer diagnosis, they can provide information on signs that something is wrong with a patient’s kidney or that a surgeon can operate. Standard blood tests include:
- Complete blood count (CBC) – Measures the number of cells in the blood. It can help identify if a person is anemic or has polycythemia (too many red blood cells).
- Blood chemistry tests – used to measure levels of certain chemicals in the blood like calcium and liver enzyme levels to test for kidney function and safety for imaging tests
Imaging Tests
since it’s difficult to physically feel for a mass on the kidney, doctors rely on imaging tests to look at potential cancerous areas, the spread of cancer, and how the treatment is working. These tests include:
- CT
- MRI
- Angiography (looks at blood vessels)
- X-ray
- Bone Scan
They kept me there at the hospital overnight and while I was there, they had me do another CT scan. The first scan didn’t have any contrast. This second scan was with contrast…a dye where the doctors can see things more clearly and see where the exact outline of the tumor is.
– Rachel R. | Rachel’s Kidney Cancer Story: Renal Cell Carcinoma, Stage 2
I went for the MRI. By the time I got out of the MRI tube, the doctor I was seeing at the other clinic urgent care was on the phone and waiting for me.
– Laura F. | Laura’s Kidney Cancer Stories: Renal Cell Carcinoma, Stage 4
They immediately got an ultrasound for me and scanned the area. I knew it was bad when the ultrasound tech was like, “Hold on a minute. I want to get the doctor.”
– Nina N. | Nina’s Kidney Cancer Story: Chromophobe Renal Cell Carcinoma, Stage 2
Biopsy
If the doctor cannot identify if a mass is cancerous using blood tests or imaging tests, then a biopsy might be required. A biopsy is typically used as a last resort.
What Can Kidney Cancer be Misdiagnosed As?
Kidney cancer can be challenging to diagnose because it presents similar symptoms to several other conditions that impact the kidney. Conditions that can be misdiagnosed as kidney cancer include:
- Kidney infection
- Kidney cyst
- Bladder infection
- Urinary tract infection
- Renal infraction
- Irritable bowel syndrome (IBS)
It’s essential that your doctor performs all the necessary tests to rule out the above conditions prior to performing a biopsy or starting you on a treatment plan. If you are concerned about a misdiagnosis, it’s best to get a second opinion before moving forward with treatment.
So I went in and had an initial screen, a cystoscopy, which is where they check your bladder just to see if something is wrong. There wasn’t anything there. They said well just in case, why don’t we schedule you for a CT scan.
– Kevin R. | Kevin’s Kidney Cancer Story: Transitional Cell Carcinoma, Urothelial, Invasive
How Did the Doctor Tell You That You Had Kidney Cancer?
The urgent care doctor said, “Listen, there’s something in your brain and it needs to come out. A neurosurgeon has already seen your film while you were in the [MRI] tube. He’s on his way to meet you at the hospital.”
– Laura F. | Laura’s Kidney Cancer Stories: Renal Cell Carcinoma, Stage 4
He was the one that said, “It looks like the mass is about 7.5 to 8 centimeters large.” He said there was no way they could say absolutely it was cancer, but he said there was a 99.9% chance it was cancer.
– Rachel R. | Rachel’s Kidney Cancer Story: Renal Cell Carcinoma, Stage 2
After two days at Johns Hopkins Hospital, I was in the shower, cleaning up. The hospitalist asked, “Where are you?” I said, “Getting ready to go home.” He said, “Maybe not.” I came out and he showed me my brain and kidney cancers. I then taped his description.
– Bill P. | Bill’s Kidney Cancer Story: Papillary Renal Cell Carcinoma
What Advice Do Survivors Have for Someone Who Has Just Been Diagnosed with Kidney Cancer?
Be present and don’t shut your emotions out. I went through a lot of denial in the beginning. Because of that, all of my emotions came later. It would’ve been helpful for me to really try to understand what was going on – not to try to fix the situation or look for solutions. Things are out of our control in a lot of ways.
– Rachel R. | Rachel’s Kidney Cancer Story: Renal Cell Carcinoma, Stage 2
Find whatever that is, that place within you that allows you to pick up your head and face the next day. That’s kind of a big thing, but it’s an important thing. That’s what I’ve learned.
– Laura F. | Laura’s Kidney Cancer Stories: Renal Cell Carcinoma, Stage 4
There’s so many different kinds of kidney cancer. On all these things I think I tell people listen to your body. If I had listened to my head I wouldn’t have done anything.
– Kevin R. | Kevin’s Kidney Cancer Story: Transitional Cell Carcinoma, Urothelial, Invasive
Just take care of yourself, seriously. If you can find a little bit of hope, a little bit of joy each day, that’s all you need to keep going. Too often we focus on the negatives because it’s very easy to focus on the negative, and we need to fix our mindset and have a little faith. Focus on a little bit of hope, little bit of love, a little bit of joy, and I think that will help.
– Nina N. | Nina’s Kidney Cancer Story: Chromophobe Renal Cell Carcinoma, Stage 2