In November, a rare kind of breast cancer was found. A lady
developed
a rash on her breast, similar to that of young mothers who are
nursing. Because her mammogram had been clear, the doctor treated her
with antibiotics for infections. After 2 rounds, it continued to get
worse, so her doctor sent her for another mammogram.
This time it showed a mass. A biopsy found a fast growing
malignancy.
Chemo was started in order to shrink the growth; then a mastectomy
was
performed; then a full round of Chemo; then radiation.
After about 9 months of intense treatment, she was given a clean bill
of health. She had one year of living each day to its fullest. Then
the cancer returned to the liver area. She took 4 treatments and
decided that she wanted quality of life, not the after effects of
Chemo.
She had 5 great months and she planned each detail of the final days.
After a few days of needing morphine, she died. She left this message
to be delivered to women everywhere:
Women, PLEASE be alert to anything that is not normal, and be
persistent in getting help as soon as possible.
Paget's Disease:
This is a rare form of breast cancer, and is on the outside of the
breast, on the nipple and aureole. It appeared as a rash, which
later
became a lesion with a crusty outer edge.
I would not have ever suspected it to be breast cancer but it was. My
nipple never seemed any different to me, but the rash bothered me, so
I went to the doctor for that. Sometimes, it itched and was sore, but
other than that it didn't bother me. It was just ugly and a nuisance,
and could not be cleared up with all the creams prescribed by my
doctor and dermatologist for the dermatitis on my eyes just prior to
this outbreak.
They seemed a little concerned but did not warn me it could be
cancerous. Now, I suspect not many women out there know a lesion or
rash on the nipple or aureole can be breast cancer. Mine started out
as a single red pimple on the aureole.
One of the biggest problems with Paget's disease of the nipple is
that
the symptoms appear to be harmless. It is frequently thought to be a
skin inflammation or infection, leading to unfortunate delays in
detection and care.
What are the symptoms?
1. A persistent redness, oozing, and crusting of your nipple causing
it to itch and burn (As I stated, mine did not itch or burn much, and
had no oozing I was aware of, but it did have a crust along the outer
edge on one side.) 2. A sore on your nipple that will not heal. (Mine
was on the aureole area with a whitish thick looking area in center
of
nipple).
3. Usually only one nipple is effected. How is it diagnosed? Your
doctor will do a physical exam and should suggest having a mammogram
of both breasts, done immediately. Even though the redness, oozing
and
crusting closely resemble dermatitis (inflammation of the skin), your
doctor should suspect cancer if the sore is only on one breast. Your
doctor should order a biopsy of your sore to confirm what is going
on.
This message should be taken seriously and passed on to as many of
your relatives and friends as possible; it could save someone's
life.
My breast cancer has spread and metastasized to my bones after
receiving mega doses of chemotherapy, 28 treatments of radiation and
taking Tamaxofin. If this had been diagnosed as breast cancer in the
beginning, perhaps it would not have spread..
TO ALL READERS:
This is sad as women are not aware of Paget's disease. If, by passing
this around on the e-mail, we can make others aware of it and its
potential danger, we are helping women everywhere.
Please, if you can, take a moment to forward this message to as many
people as possible, especially to your family and friends. It only
takes a moment, yet the results could save a life.
posted by Diana @ 8:53 PM
7 Comments:
What is Paget’s disease of bone?
Paget’s disease of bone is a chronic skeletal disorder which may result in enlarged or deformed bones in one or more regions of the skeleton. Excessive bone breakdown and formation can result in bone which is dense but fragile. Pain is the most common symptom. Complications may include arthritis, fractures, bowing of limbs and hearing loss if Paget’s disease affects the skull. Though the causes are not known, medical therapies are available to manage the disease.
Questions & Answers About Breast Cancer Metastatic to Bone
Although initial therapy may be curative, women with early stage breast cancer treated with surgery alone are still at risk for recurrence of their breast cancer, even 15-20 years later. The breast cancer may reappear in the breast area or spread to other parts of the body (metastasize). Of all the women diagnosed with breast cancer, the 10-year incidence of bone metastases is 18%. However, 70% of women with advanced breast cancer will develop bone metastases.
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How Is Paget’s Disease of Bone Diagnosed?
Paget’s Disease Symptoms
Many people with Paget’s disease do not know they have it. There may be no symptoms, or the symptoms may be very mild. Sometimes the symptoms are mistaken for something else, such as arthritis. In other cases, complications, which vary depending on which bones are affected, have developed before the diagnosis of Paget’s disease is made.
Methods Used to Diagnose Paget’s Disease
Three tests – an x ray, blood test, and bone scan – are commonly used to discover Paget’s disease. Sometimes Paget’s disease is found by accident when one of these tests is done for another reason. X rays are used to make the final diagnosis. On rare occasions, a fourth test called a bone biopsy also may be used to confirm the diagnosis.
X rays: In x-ray images, bones affected by Paget’s disease have a particular appearance that is different from other bones. Accordingly, a physician will use x rays – alone or with a blood test or bone scan – to confirm whether or not a person has Paget’s disease of bone.
Blood test (measurement of serum alkaline phosphatase): Sometimes blood test results are what first alert physicians to the possibility that a person has Paget’s disease. When blood contains a higher-than-usual level of a chemical substance called serum alkaline phosphatase (SAP), it is a sign that the disease may be present.
SAP is a type of enzyme made by bone cells that is overproduced by pagetic bone. The SAP level for someone 60 years of age or older typically ranges from 20 to 120 units, depending on the testing laboratory used.
A mild increase in SAP, up to twice the usual level, may indicate Paget’s disease or another condition, such as liver disease or a bone fracture that is in the process of healing. However, a SAP level greater than twice the usual level strongly suggests Paget’s disease, especially if the person’s serum calcium level, phosphorus level, and kidney function are normal.
Brothers, sisters, and children of someone with Paget’s disease may decide to have a SAP test annually after the age of 40 to rule out the possibility that they have inherited the disease. In addition, after diagnosis, measurements of SAP levels are used to track how well a person with Paget’s disease is responding to treatment.
Bone scan: A bone scan is a test that helps identify which bones have been affected by Paget’s disease. The procedure is also a useful way to determine the extent and activity of the disease. In a bone scan, a safe amount of a radioactive substance is injected into the person’s vein. The substance circulates through the bloodstream and “highlights” places in the skeleton where Paget’s disease may be present. If the scan suggests that the person has the disease, the affected areas usually are x rayed to confirm the diagnosis.
Bone biopsy: In rare cases, a biopsy (a small sample of tissue removed for analysis) is taken from bone that is suspected of being pagetic. Bone biopsies are done when x-ray images do not confirm the presence or absence of Paget’s disease.
Urine test: Although urine tests are not used to detect or diagnose Paget’s disease, they may be used to monitor a person’s response to treatment for the disease. In this test, a sample of the person’s urine is analyzed for the presence of substances called bone markers. These substances provide information about bone resorption – the process of breaking down and taking up of bone by the body. One such substance is N-telopeptide.
After the Diagnosis
There are several effective treatment options for people who are diagnosed with Paget’s disease. Information on these treatments is available by contacting the NIH National Resource Center to order the following publications:
Information for Patients About Paget’s Disease of Bone
Use of Bisphosphonates in Metabolic Bone Diseases
Treatment Decisions for Patients With Paget’s Disease of Bone
Resource
For more information about Paget’s disease, contact:
The Paget Foundation for Paget’s Disease of Bone and Related Disorders
120 Wall Street, Suite 1602, New York, NY 10005-4001
Tel: 800-23-PAGET (free of charge) or 212-509-5335
Fax: 212-509-8492
Internet: www.paget.org
E-mail: PagetFdn@aol.com
The National Resource Center acknowledges the assistance of
The Paget Foundation in the preparation of this publication.
Revision Date: 3/2005
Types of Pain
Paget’s disease can cause several different kinds of pain, as described below.
Bone pain: Small breaks called microfractures can occur in pagetic bone. These breaks can cause pain, especially in weight-bearing bone such as the spine, pelvis, or leg.
Joint pain: Cartilage (a hard but slippery tissue that cushions the joints) can be damaged when Paget’s disease reaches the end of a long bone or changes the shape of bones located near joints. This can result in osteoarthritis and joint pain.
Muscle pain: When bone is changed by Paget’s disease, the muscles that support the bone may have to work harder and at different angles, causing muscle pain.
Nervous system pain: Bones enlarged by Paget’s disease can put pressure on the brain, spinal cord, or nerves. This can cause headache; pain in the neck, back, and legs; and sciatica, a “shooting” pain that travels down the sciatic nerve from the lower back to the leg.
Available Treatments
It is important for most people with Paget’s disease to receive medical treatment as soon as possible. Today’s treatments can help reduce pain and possibly prevent the development of further complications.
Several types of medicines are used to address the pain caused by Paget’s disease. A doctor may recommend drugs designed to control the Paget’s disease or to relieve pain. The doctor also may recommend drugs to address painful complications of Paget’s disease, such as arthritis.
When severe pain cannot be controlled with medicine, surgery on the affected bone or joint may be needed.
An appropriate program of regular exercise also can help people with Paget’s disease reduce or eliminate pain.
What is Paget's Disease ?
First diagnosed by Sir James Paget in 1877, Paget's disease of bone, or osteitis deformans, is a disease of the osteoclast and is the most exaggerated example of disordered bone remodeling. It is a focal disorder of accelerated skeletal remodeling that can involve a single bone or multiple bones. Paget's disease is characterized by excessive bone resorption followed by excessive bone formation, resulting in bone that is architecturally unsound. This often leads to bone pain, bone deformity and skeletal fragility.
Pathology of Paget's Disease
The initial abnormality in Paget's disease is a dramatic increase in the rate of bone resorption at areas of heightened bone remodeling. Pagetic osteoclasts are abnormal -- approximately five times larger than normal containing an average number of 20 nuclei per cell compared with three to four nuclei in normal adult osteoclasts. The osteoblasts are not affected, however. This extreme difference in size between the two cell types causes the intensely elevated rate of bone resorption. Because bone resorption triggers bone formation, the rate of bone resorption is matched by a rapid rate of bone formation. The new bone is structurally disorganized, however, resulting in an overall decrease in bone strength and an increase in susceptibility to bowing and fractures. In addition, the abnormal bone is marked by a high level of vascularity and an excess of fibrous connective tissue in the marrow.
Clinical Presentation of Paget's Disease
While any bone may be affected by Paget's disease, the most commonly involved bones are the pelvis, vertebrae, skull, femur and tibia. Prevalent signs and symptoms of Paget's disease are bone pain and skeletal deformity. Bone pain usually results from the rheumatologic and neurologic complications of the disease rather than from the pagetic lesions themselves. When bone pain does occur among patients, its onset is frequently late in the disease process and is usually unrelated to physical activity. Pain from a pagetic lesion in the femur or tibia, however, may increase with weight bearing.
Skeletal deformities that occur as a result of Paget's disease are most often noted in the lower extremities and the skull. Long bones tend to exhibit bowing, while the skull can become enlarged. An enlarged skull can lead to headaches or hearing loss when the disease affects the temporal bone. When present in the spine, the increased bone volume causes compression of the spinal cord or nerve roots and may result in severe pain and impaired neurological function. In addition, the skin over the pagetic lesions is frequently warm due to the increased blood flow to the lesions.
A number of complications may result from Paget's disease. Of these, the most devastating is a transformation of the bone that becomes cancerous. Osteosarcoma or other types of sarcoma occurs in less than 1 percent of patients with Paget's disease, but at a significantly higher rate than in non-affected individuals. Osteosarcoma contributes significantly to the death rate from Paget's disease.
Diagnostic Evaluation and Recommendations
Paget's disease can be diagnosed in patients through radiology, radionuclide bone scanning, biochemical testing of bone resorption parameters, or biochemical testing of bone formation parameters. When tested through roentgenographic or radiographic means, Paget's disease displays three distinctive stages. In the earliest stage of the disease, an osteolytic lesion may be observed in the skull or a long bone. In the second stage of the disease, x-rays reveal both osteolytic and sclerotic changes in the same bone. In the last stage of the disease, the sclerotic lesion dominates the bone and there may be an increase in the dimensions of the bone itself. A radionuclide bone scan using a radiolabeled bisphosphonate is the most efficient means of detecting Paget's disease in the skeleton. The bisphosphonate is injected intravenously and is concentrated in areas of increased blood flow and high levels of bone formation, both common characteristics of Paget's disease. This test is used primarily to establish the full extent of skeletal involvement for a patient.
Biochemical tests reflecting osteoclast activity and resultant bone collagen resorption include measurements of urinary hydroxyproline/creatinine as well as measurements of urinary and serum deoxypyridinoline, N-telopeptide and C-telopeptide. As a marker of osteoblast activity, the measurement of serum total alkaline phosphatase activity provides a general indication of bone turnover and disease activity in Paget's disease.
At least one measurement of bone metabolic activity and x-rays of affected bones are the minimum recommended level of evaluation to track and monitor the progression of treatment in a patient with Paget's disease. For most patients, a decrease in the total serum alkaline phosphatase activity is sufficient to indicate and determine changes in overall disease activity. Since the total serum alkaline phosphatase level is a reflection of both the total bone surface affected by Paget's disease as well as the total activity of the disease at those sites, serum alkaline phosphatase can be normal in patients with a small focus of symptomatic Paget's disease. Serial radiographs should be performed on those patients with lytic lesions in weight-bearing long bones in order to document healing. A bone scan is valuable in defining the full extent of the disease and identifying asymptomatic lesions located in "at risk" areas.
Indications for Treatment
Treatment for Paget's disease is based upon antiresorptive therapy. There are four general indications for treatment of Paget's disease:
Symptoms due to metabolically active Paget's disease warrant treatment. This includes bone pain related to a pagetic site or fatigue fracture, headache resulting from an affected skull, back pain from affected pagetic vertebrae or other neurological syndromes associated with pagetic changes.
Treatment is warranted in a patient planning to undergo elective surgery on a pagetic site, such as hip replacement, in an attempt to minimize the operative blood loss due to hypervascularity present in active pagetic bone.
Treatment is indicated in the management of hypercalcemia, a rare occurrence when a patient with multiple bones affected by Paget's disease and a highly elevated serum alkaline phosphatase level undergoes prolonged immobilization.
Many investigators believe that treatment is indicated as an attempt to decrease local progression and reduce the risk of future complications -- even in asymptomatic patients whose sites of disease and degree of metabolic hyperactivity place them at risk of progression and complications. This group includes individuals who may be at risk for bowing deformities in their long bones; for hearing loss because of skull enlargement; for neurological complications due to pagetic changes in their vertebrae; or for secondary arthritis as a complication of Paget's disease located next to major joints.
There is no direct evidence that aggressive treatment of Paget's disease is associated with prevention of progression or reduction in risk of future complications. Investigators have looked to indirect evidence, however, to suggest this possibility. This evidence includes:
The failure to treat Paget's disease has been associated with the further destruction of the bone and the progression of bone deformities;
Successful treatment of Paget's disease has been associated with restoration of normal patterns of new bone deposition; and
One study has shown that facial and skull deformities improved after successful treatment.
Some investigators conclude, therefore, that it is good clinical practice to treat both symptomatic patients whose symptoms may respond to a reduction in abnormal bone turnover as well as asymptomatic patients with active Paget's disease.
We don't think about people because they exist. They exist because we think about them. We exist, -not until death- but until we're forgotten. Kc
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