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Wilm's Tumor - (really) late term effects in lungs??

christinedc
Posts: 4
Joined: May 2003

Hello
I am new to this website but I think it's great! By introduction, I am a 34 year survivor of Wilm's Tumor. I had it at 3 and it recurred at 5. I have been disease free since. I am in the process of getting a new kidney (I only had a small piece of one kidney left after going through all that and it is pooping out). I was considering being a participant in a clinical trial so they had me jumping through more hoops than a normal hospital would. One of the tests I did was a CT scan which showed lesions on the lining of my lungs. A doctor who popped his head in the office wanted to immediately do an open surgery biopsy. Since my regulator doctor thinks it could be scar tissue from the intense radiation that all of us Wilm's survivors know there is no way I am jumping to surgery. Anyone else ever seen this show up? fyi, It is not in the lungs and chest xrays for all these years have shown absolutely nothing.

(If anyone wants info on the study, let me know. I am NOT doing it.)

frantik
Posts: 20
Joined: May 2002

Hi Christine:

I sent you a personal message. I wanted to also respond in the larger forum. I too am a Wilms survivor. I have had a number of late effects, though nothing like what you are looking at. I strongly encourage you to find a physician who is knowledgeable in late effects to help you right now. They are fairly few and far between, but they do exist. Here is a resource for finding one in your area-
http://www.patientcenters.com/press/follow-up.clinics.html

Best of luck.

michelej
Posts: 1
Joined: Jul 2003

Hi frantik,
I am new to this website. I too am a long term survivor of Wilm's tumor (30yrs). I was diagnosed just before my 5th birthday. I live in Australia and found this website by accident. I would be happy to share any long term effects suffered by me.
Michele

frantik
Posts: 20
Joined: May 2002

Hi there:

Yes, I too had Wilm's. I am a 30 year survivor. I was diagnosed in 1972 when I was 2 years old. I later (1973) had a recurrence to my left lung. I don't really like to have detailed discussions of my medical history on this list, as I am an active member of another group that works better for me and provides a more active forum for discussion. You might want to check that group out. I highly recommend it.

The ACOR lists have helped me immeasurably. There are currently more than 250 members on that list. There are people from all over the world, including the US, Canada, South Africa, England, Denmark. Not sure about Australia, but you could always be the first.

When I started really researching long-term survivorship issues, I found a book by Nancy Keene, et al called Childhood Cancer Survivors This book is a must-have for people like us. You can even order it from Amazon.

In case you are interested in either of these resources, I wanted to pass them on to you:
The book:
http://www.patientcenters.com/survivors/
The ACOR list:
http://listserv.acor.org/archives/lt-survivors.html

Take care!

lindseyv
Posts: 6
Joined: Apr 2003

My lungs have been clean for the last 9 years. Lately it's my heart that has caused problems. I have some kind of 6mm nodule that has yet to be identified. I've experienced episodes marked by heart palps, strained breathing, and a very rapid pulse (which are not the result of my thyroid we've found). Very uncomfortable. I'm about to undergo a transesophogeal echo to try and confirm what this little thing is. But I am wondering if anyone has had a similar heart finding?

lindseyv
Posts: 6
Joined: Apr 2003

My lungs have been clean for the last 9 years. Lately it's my heart that has caused problems. I was treated with chest radiation, anthracyclines & cyclophasphamide. I have some kind of 6mm nodule that has yet to be identified. I've experienced episodes marked by heart palps, strained breathing, and a very rapid pulse (which are not the result of my thyroid we've found). Very uncomfortable. I'm about to undergo a transesophogeal echo to try and confirm what this little thing is. But I am wondering if anyone has had a similar heart finding?

karains
Posts: 1
Joined: Jun 2003

hey my name is kelly i have not had any problems with lesions on my lungs but i do have them in my bladder and many other effects so good luck to you

LittleShyGirl
Posts: 2
Joined: May 2003

HI my name is Linda I am 32 yrs. old and I had wilm's tumor too at age 2 1/2. I went through chemo only and had my right kidney removed. I have had problems with my other kidney in the fact that if I let my personal life get to me it will start to fail.... but other then that I am doing fine I have never had a cat scan so I dont no if I have lesions on my lungs but I do belong to a wilm's tumor study group. I am going to check into getting my lungs checked out I have two beatiful and I am not leaving them for anything .... I did develope athsma at age 30 that is the only lung problems I have had.... but hope you are doing ok Christinedc I really do life is hard enough and fun too my preys and thoughts are with you ,,,,,,,

LMGirl924
Posts: 2
Joined: Oct 2003

I was diagnosed with Wilm's Tumor when I was ten months old. It was the size of a grapefruit! I should have died but, i'm here. I am 20 years old and healthy as a horse. I only have two thirds of a kidney and wonder if i'll need a new one. I guess I should add that my mother had Wilm's Tumor when she was 5. Best of luck to you and God bless.

frantik
Posts: 20
Joined: May 2002

Hi LM Girl:

I also had Wilm's and also had a tumor the size of a grapefruit! But, in relative terms, yours was much bigger since you were a tiny thing at 10 months old. I was older when I was diagnosed at 2 years old.

I hope you are taking good care of yourself and that you see a doctor who knows something about long-term cancer survivors. I have learned alot through an e-mail support group I belong to for long term cancer survivors. You may be interested, there are a number of Wilm's survivors who are active members.
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

Even though you are "healthy as a horse" there are special precautions you'll want to take. Here's some information from the Children's Oncology Group on taking care of a single kidney:
Keeping Your Single Kidney Healthy
The kidneys are vital organs responsible for filtering out waste products from the blood,
controlling blood pressure, and stimulating red blood cell production. Treatment for
childhood cancer sometimes requires removal of one kidney (nephrectomy). Although
you can live a healthy life with only one kidney, it is important that you take steps to
protect your remaining kidney in order to keep it as healthy as possible.
What follow up is recommended?
• Have a medical check-up at least yearly. This should include a blood pressure check, blood tests for kidney function (BUN, creatinine), and a urinalysis.
• If you have high blood pressure, or abnormal BUN, creatinine, or urinalysis, you should have a blood test for electrolytes (blood salts and minerals) and a creatinine clearance test or GFR scan. The creatinine clearance test is a timed
urine collection. The GFR scan is a special x-ray that measures kidney function using a small amount of radioactive material injected through a vein. If any problems are detected, these tests should be repeated periodically to monitor
your kidney function.
• If you have high blood pressure, protein in the urine, or other signs of worsening kidney problems, you should have an evaluation by a nephrologist (kidney specialist).
What can I do to keep my kidney healthy?
• Drink plenty of water, especially when playing sports, while out in the sun, and during hot weather.
• Call your healthcare provider immediately if you have symptoms of a urinary tract infection (burning when you urinate, urinating more frequently than usual, and/or feeling an urgent sensation to urinate).
• Check with your healthcare provider or pharmacist before taking any new medicines (prescription, over-the-counter, or herbal). Be sure that your healthcare provider or pharmacist is aware that you have a single kidney.
• Use non-steroidal anti-inflammatory drugs with caution. These include pain or fever medicines (over-the-counter and by prescription) that contain aspirin, ibuprofen, acetaminophen or naproxen. These medications have been known to cause kidney damage (analgesic nephropathy), especially when taken in excessive doses or when two or more of these medications are combined with caffeine or codeine and taken over long periods of time. If you require long-term medications for management of pain, be sure to discuss the alternatives with your healthcare provider, and to choose medications that are not harmful to your kidney.
• Have a health checkup at least once a year that includes a blood pressure measurement, a urine test for protein, and blood tests measuring kidney function.
• Some healthcare providers recommend that people with only one kidney should avoid contact sports or use a kidney guard if participating in contact sports. We urge you to discuss your kidney status with your healthcare provider before making decisions about participation in sports and recreational activities.
• The most common cause of kidney injury is due to accidents, most often involving automobiles, bicycles (especially handlebar injuries), and falls. Because of this, it is important to use seatbelts properly when riding in a vehicle (lap
belts should be worn across the hips, not around the waist), and to use common sense when bicycling (avoid racing and stunt riding), in order to prevent kidney injury whenever possible. If you are involved in an accident and a kidney injury is suspected, seek immediate medical evaluation.
Are there any other risk factors for kidney problems?
Certain treatments for childhood cancer can sometimes cause kidney problems. These include radiation to the kidney, chemotherapy that can affect the kidney (cisplatin, carboplatin, methotrexate and/or ifosfamide), or other medications that can affect the kidney (certain antibiotics or medications used for treatment of graft-versushost disease). In addition, other risk factors that may increase the chance of kidney problems include medical conditions, such as high blood pressure or diabetes, urinary tract problems such as frequent urinary infections or back-flow of urine into the kidney (reflux), or bladder removal (cystectomy).

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