Kidney Cancer -- A Hidden Killer
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My husband had been feeling tired and run down, so he'd had a physical. Nothing turned up. A few months later, driving, he shifted uncomfortably in his seat.
I glanced at him. "What's wrong?"
"I feel like something's poking me." He groped around behind him, feeling the smooth padded back of the bucket seat. No lumps, bumps, or protruding springs; that wasn't it.
A week later, he took me aside after a political meeting. "I just peed blood," he said quietly. "It looked like cranberry juice."
That was our introduction to kidney cancer. Often there are no symptoms until it's too late. Often the symptoms are so general or vague that the kidneys are never considered...until it's too late.
Symptoms may include fatigue, malaise (a general feeling of being less than healthy or under the weather), loss of appetite, possible flank pain or lower-back pain, or a sudden ongoing increase in blood pressure. Only rarely will a doctor be able to feel the mass. Blood in the urine is often absent, often treated as a bladder infection, and often goes away on its own. By the time problems become obvious, the cancer is usually far advanced.
In my husband's case, initially we were told it was too late; he had only weeks or months to live. Fortunately, that diagnosis was wrong. The kidney was removed; and although the cancer came back a few years later, it was slow-moving. We had nearly ten more good years together, including a lot of medical adventures. Many are not so lucky.
Here's some of what I learned.
Rare cancers require more effort from the patient
With any rare cancer, the patient must take on a greater role in learning about the disease -- if only to find a doctor who can treat it successfully. There are experts for almost every type of cancer. The trick is finding them! That burden often falls entirely on the patient and family.
The internet can be a great help in this. No doctor can be expected to know who's an expert for each kind of cancer; but other patients have faced the same kind of search, and they can help you. Some have founded websites to provide information. Others form groups via mailing lists (listservs) and exchange information by email.
Let's look at information resources later, and get back to kidney cancer.
General info on kidney cancer
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Kidney cancer is considered rare, but it's not really uncommon to find it. Each year in the USA, some 30,000 adults get kidney cancer -- about 2.4 percent of all new cancers. There's a gender bias; two-thirds are men. Smoking and exposure to heavy metals like cadmium increase the risk, and there's also a genetic component. However, these are simply risk factors. The cause of kidney cancer is not known.
If kidney cancer is your diagnosis, ask your doctor for the medical name of the type you have, and write it down. There are several types; beyond surgery, the treatment can differ greatly.
Kidney tumors usually are not biopsied. The procedure has risks, especially the risk of getting a false negative -- showing no cancer when cancer is indeed present. Other than simple cysts, the vast majority of kidney growths are malignant. The normal procedure is to remove them.
You will probably undergo several tests to make sure the cancer has not metastasized (spread to other parts of the body). Typically these tests include a CT scan of the chest, abdomen, and pelvis; a bone scan; and possibly a brain scan, especially if you have any neurological symptoms. Kidney cancer often moves into the lungs, bones, liver, or brain, although it can go anywhere in the body.
If the cancer has not metastasized, surgery is the preferred treatment. Surgery is often helpful even when there is metastasis, so don't let your doctor be too quick to rule it out. (Get an expert opinion before taking "no" for an answer. Don't settle for the word of your local oncologist!)
Usually the entire kidney is removed in a nephrectomy. If there is a strong risk of recurrence in the kidneys themselves, if you have only one kidney or limited kidney function, or if the tumor is very small, you might have a partial nephrectomy instead. A partial nephrectomy saves what is functional of your kidney, but the risks of bleeding and the recovery time typically are increased.
Either surgery may be traditional, using a large incision; or laparoscopic, using several small incisions for insertion of a viewscope and instruments. Recovery time is shorter with laparoscopy, but traditional surgery allows for a better examination of surrounding organs. (If you choose laparoscopy, hand-assisted laparoscopy is recommended. Another form of laparoscopy grinds the tumor to bits inside a bag placed around the kidney. This leaves nothing to biopsy, and there is a slight risk of some of the tumor escaping to seed new growth.)
If you have surgery, ask for a copy of the surgeon's report and the pathology report. They're free to you if you ask soon after the surgery; there may be a small charge if they have been filed away. These reports provide details you'll never hear in your doctor's oral summary; and it's a good safeguard in case the originals are ever misplaced.
If you are cancer-free after surgery, you will still need to watch carefully to make sure the cancer hasn't come back. You will probably start with more frequent scans and gradually move to an annual check-up which should include a CT scan of the chest, abdomen, and pelvis. Take responsibility for making sure your scans are done on schedule. It's your life at stake, not your doctor's!
Do not be lulled into a false sense of security by the glib phrase, "We got it all." The visible cancer may be gone, but microscopic cells may be lurking anywhere in your body.
If you have any unusual symptoms, even years after recovery, rule out the cancer first before accepting a simple explanation like "growing older" or "arthritis". Be vigilant, not worried -- but don't settle for easy reassurances, either.
Types of kidney cancer and treatment
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Renal cell carcinoma (RCC) is the most common type of kidney cancer. It can be slow or fast-growing. The RCC mortality rate is high, but there is hope even for advanced cases.
RCC is different from most other cancers in these ways: It requires lifelong followup because it can come back many years later. It is more directly linked to improper function of the immune system than other cancers are. Chemotherapy and regular radiation usually have no lasting effect on it. Surgery can be effective even on metastatic cases if all visible signs of cancer can be removed. There are rare cases of spontaneous remission.
The major RCC subtype is clear-cell. About 15 to 20 percent of cases fall into other subtypes that share the differences above but might not respond to the same treatments as clear cell. In the hands of experts there's hope here too, even with advanced cases.
Some cases of RCC present a "mixed type" pathology. Experts suggest a re-evaluation of the pathology slides by a highly-experienced lab. Many "mixed types" are actually classifiable as clear cell. A lab that does a lot of work on renal cell carcinoma is better able to make this evaluation.
Treatment for RCC: If individual tumors can't be surgically removed, they might be treated with surgical alternatives like highly-focused radiation (radiosurgery), embolization (cutting off the blood flow to a tumor), cryoablation (extreme cold delivered by a carefully placed probe to kill the tumor), or radiofrequency ablation (extreme heat, likewise).
If surgery or surgical alternatives can't eliminate the cancer, systemic treatment is considered. For clear-cell and some other subtypes, this usually involves immunotherapy such as Interleukin-2 (IL-2) and Interferon-alpha; biologic agents; experimental use of targeted agents; or a combination of these.
High dose Interleukin is administered in hospitals, usually in the ICU. Its side effects are rough, but they usually disappear completely after treatment stops. For a small percentage of those treated, the disease goes away and may never return. Others get reduction of their tumors or stability. Unfortunately, the majority get no benefit at all. Interleukin can be delivered at home in lower doses, with lesser side effects extending over a longer period of time, and with slightly smaller percentages of response.
Both high and low dose Interleukin are sometimes combined with Interferon or other agents to attempt to increase the response. A combination currently showing promise is low dose IL-2; 400 mg of Thalidomide daily to decrease growth of new blood vessels to feed the tumors; a very low dose of Interferon (one million units daily); and GM-CSF (Leukine).
Some chemotherapies, notably Gemzar and 5-FU or its pill form Xeloda, can provide temporary reduction of tumors. This usually is a stop-gap or last-resort treatment, although combinations to extend the benefits are being tested.
Nonmyeloablative stem-cell transplant is a last resort. It's still fairly new and quite risky -- similar to a bone-marrow transplant but not quite as drastic. It provides the patient with a new immune system. Short-term and long-term side effects can be life-threatening.
Transitional cell carcinoma TCC of the renal pelvis is about a fifth of kidney cancer. TCC is an entirely different cancer, not related to RCC except by location. It is common in the bladder but rare in the kidney. Again, surgery is the preferred option. If it metastasizes or recurs, chemotherapy can provide some help. However, once it's recurred, kidney TCC tends to come back despite chemo.
Collecting duct cancer (Bellini's duct carcinoma) is extremely rare and very nasty. It's uncertain whether this form of cancer is closer to RCC or TCC. Because it's so rare and is usually discovered late, no really effective treatments have been found.
There is about a 5 percent chance that a renal tumor will turn out to be an oncocytoma, which is benign. If this is the case, rejoice.
Wilm's Tumor is not considered in this article. It's usually a childhood cancer, the most common abdominal cancer in children. The tumors often get quite large, but fortunately they are usually discovered before metastasizing. Metastasis or unfavorable histology (cell type) make treatment more difficult. Most children with Wilm's Tumor make complete recoveries.
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(Where a web address is given, simply copy and paste it into your web browser and press "Go.")
http://cancerguide.org/kofaq -- You can join the kidney cancer mailing list on this page, which also offers tips on using it. Most members say the mailing list is the best information resource they've ever found, although the amount of email can be daunting. Email the list owners at KIDNEY-ONC-REQUEST@LISTSERV.ACOR.ORG if you have any questions.
http://www.acor.org -- Follow the link for "Mailing Lists" to find the list for the cancer you're dealing with.
http://cancerguide.org -- A very helpful website by a kidney cancer survivor, Steve Dunn.
http://cancerguide.org/kidney.html -- Cancerguide information specifically about kidney cancer.
http://web.ncifcrf.gov/research/kidney -- Information on kidney cancer from the National Cancer Institute.
http://www.nci.nih.gov -- The National Cancer Institute's guide to all kinds of cancer including kidney. Call NCI at (800) 4-CANCER for a "state of the art" report on your type of cancer and resources for treating it in the states of your choice, or to find clinical trials that apply.
http://web.ncifcrf.gov/research/kidney/famkid.html -- If there have been several kidney tumors in your family (or family tree), please use this webpage to contact NCI's Familial Kidney Tumor Program. Your entire family may need screening.
http://www.kidneycancerassociation.org -- The Kidney Cancer Association's webpage with a barebones description of its resources. Calling gives you much better information! Call (800) 850-9132 for personalized advice, recommendations, and a free information kit.
Internet chat: Kidney cancer chat is currently available on Tuesday nights at 8 p.m. Eastern time. Go to www.kidneycancerchat.org and then to the chat page; scroll down to Java Chat and enter your nickname.
Robin Martinez is a writer and editor who became involved with kidney cancer when her husband developed it 14 years ago. Today she's one of the administrators of the KIDNEY-ONC mailing list on www.acor.org, an information exchange for patients and caregivers.