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My husband was diagnosed with Wilms Cancer, it usually occurs in children, does anyone else have Wilms?

JoannePasillas's picture
Posts: 10
Joined: Sep 2010

My husband of 38yrs old was diagnosed w/ Wilms cancer, it is usually found in kids and not in adults... does anyone else have this? He will be starting Chemotherapy next week, hopefully...

HeartofSoul's picture
Posts: 730
Joined: Dec 2009

ill try and help you joanne

the email you provided me isnt clear, Austin... @ Shivers clinic????

first the link im providing is for adult wilms cancer survivors

Wilms cancer

A malignant tumor of the kidney that occurs predominantly in children less than 5 years old. It is the most common kidney cancer in children. Wilms' tumor usually only occurs in one kidney. Roughly 500 new cases are diagnosed in the US each year with about 6% of them involving both kidneys. Certain genetic syndromes may predispose children to Wilms' tumors e.g. Denys-Drash syndrome and Beckwith-Wiedemann syndrome. Also called nephroblastoma

•Abdominal mass
•Abdominal swelling
•Abdominal pain
•Appetite loss
•Weight loss
•Blood in urine
•High blood pressure

Kidney Health Specialists (Nephrology):
◦Nephrology (Kidney Health)
◦Pediatric Nephrology (Child Kidney Health)
◦Urology (Urinary/Bladder)
◦Kidney Doctors (Nephrologists) -- Local Directory

Wilms tumor, also called nephroblastoma, is a malignant (cancerous) tumor originating in the cells of the kidney. It is the most common type of renal (kidney) cancer in children and accounts for about 5 percent of all childhood cancers.

Approximately 500 children in the US are diagnosed with Wilms tumor each year.

The disease can occur at any age between infancy and 15 years, but in most cases, the tumor is detected by the age of 3. It is slightly more common among girls and African-Americans.

The tumor can be very large and it may spread (metastasize) to other body tissues. The most common site for Wilms tumor to metastasize is the lungs. Lesions may also occur, however, in the liver, the other kidney, brain, and/or bones. In approximately 5 percent of children with Wilms tumor, both kidneys are involved.

What causes Wilms tumor?
It is uncommon for Wilms tumor to run in families. Less than 2 percent of cases will have an affected relative. Most cases of Wilms tumor are considered sporadic (occur by chance) and are the result of genetic mutations that affect cell growth in the kidney. These mutations generally arise after birth, but, in some cases, children are born with a genetic alteration that predisposes them to cancer.

How is Wilms tumor diagnosed?
In addition to a complete medical history and physical examination, diagnostic procedures may include, but are not limited to, the following:

•abdominal ultrasound - a diagnostic imaging technique that uses high- frequency sound waves and a computer to create images of blood vessels, tissues and organs; can provide an outline of the kidneys, the tumor, and determine if there are problems in the renal or other major veins in the abdomen. It can also determine if there are any lesions or tumors in the opposite kidney.

•abdominal computed tomography scan (Also called a CT or CAT scan.) - a diagnostic imaging procedure that uses a combination of x-rays and computer technology to produce cross-sectional images (often called slices), both horizontally and vertically, of the body. A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than x-rays.

•magnetic resonance imaging (MRI) - a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body. MRI can determine if there are metastases (spreading), if there are any tumor cells in the lymph nodes, and/or if any other organs are involved. Wilms tumors can compress other organs in the area causing effects on their function.

•chest x-ray - a diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film. A chest x-ray can determine if there are metastases (spreading) in the lungs.

•blood and urine tests - to evaluate kidney and liver function.

•biopsy - when a sample of tissue is removed and examined under a microscope. A biopsy of the tumor to evaluate cells, extent of disease, and diagnosis.

•surgical removal of the tumor and kidney (nephrectomy) - surgery may be necessary for a definitive diagnosis and determining the extent of the disease.

Treatment for Wilms tumor:
Specific treatment for Wilms tumor will be determined by your child's physician based on:

•your child's age, overall health, and medical history
•extent of the disease
•your child's tolerance for specific medications, procedures, or therapies
•expectations for the course of the disease
•your opinion or preference

Treatment may include (alone or in combination):

•surgery (to remove all or part of the affected kidney and any involved structures)
•biopsy of the tumor (if the tumor is too large or involved in surrounding structures to be removed; a biopsy is also necessary for diagnosis and staging the disease)
•chemotherapy (to shrink the remaining tumor, or to treat metastasis and/or recurrent disease)
•radiation (to shrink the remaining tumor or to treat metastasis and/or recurrent disease)
•medications (to control pain, hypertension, nausea, and infections)
•blood pressure monitoring (essential when a kidney tumor is present)
•continuous follow-up care (to determine response to treatment, detect recurrent disease, evaluate function of remaining kidney, and manage late effects of treatment)

Long-term outlook for Wilms tumor:
The factors for determining the prognosis and long-term survival of children with Wilms tumor include the following:

•histology, favorable or unfavorable
•extent of the disease
•age and overall health of the child at diagnosis
•size of the primary tumor
•response to therapy
•your child's tolerance of specific medications, procedures, or therapies
•new developments in treatment
As with any cancer, prognosis and long-term survival can vary greatly from child to child.

Prompt medical attention and aggressive therapy are important for the best possible prognosis. Continued follow-up care is essential for the child diagnosed with Wilms tumor. Side effects of chemotherapy and radiation, as well as second malignancies, can occur in survivors of cancer. New methods are continually being discovered to improve treatment and to decrease side effects.

JoannePasillas's picture
Posts: 10
Joined: Sep 2010

Thank you for the info... I have read all this in the internet but I have not found anything about Wilms tumors in adults... and plus my husband never had blood in the urine or weight loss... he had pain on his right side ... which was the tumor on the kidney that was twice its size.... we are both 37 yrs old and have 3 boys, 3,7,10 and my oldest has Aspergers.... I feel so much pressure and I worry more than I used to and believe me I worry...lol.. but I just want to find someone, some story of someone who had Wilms cancer in adults and survived...

HeartofSoul's picture
Posts: 730
Joined: Dec 2009

i provided you with a link above for adult wilms cancer survivors
you may have missed it

see below link


JoannePasillas's picture
Posts: 10
Joined: Sep 2010

oops sorry got it ... thanks alot God Bless you

hedasa's picture
Posts: 2
Joined: Nov 2019

I live in Cd Juarez Mexico, and I had a tumor on my left kidney removed. 13 pathologists in El Paso and Juarez were1 unable to fully diagnose the tumor, but they all agree it may be Wilms. I have to get a petscan and my next appointment with the oncologist is on the 17th of December. Tjey told me that if they were unable to diagnose, I will.have to.go to either Phoenix or Houston. 

I read somewhere there are about 250 documented cases... I guess it more common now?

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