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Patient and Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Breast Cancer

What is Breast Cancer?
Common Symptoms
What Causes Breast Cancer?
Treatments
After Treatment
Additional Information


What is Breast Cancer?
Breast cancer is the most common cancer occurring in women (excluding cancers of the skin) and the second most common cause of death from cancer in women after lung cancer. Men can also develop breast cancer, but male breast cancer is rare, accounting for less than 1% of all breast cancer cases. If diagnosed at an early stage, breast cancer has an encouraging cure rate: up to 97% of women diagnosed with localized breast cancer will survive five years after their diagnosis. Even if the cancer is found at a more advanced stage, new therapies have enabled many people with breast cancer to experience a good quality of life.

The breast is comprised mainly of fatty tissue. Within this tissue is a network of lobes, which are made up of tiny, tube-like structures (called lobules) that contain milk glands. Tiny ducts connect the glands, lobules, and lobes and carry the milk from the lobes to the nipple, located in the middle of the areola (darker area that surrounds the nipple of the breast). Blood and lymph vessels run throughout the breast; blood nourishes the cells, and the lymph system drains bodily waste products.

The main forms of breast cancer are:

  • Invasive ductal carcinoma — This type of breast cancer develops in the milk ducts and accounts for about 79 percent of cases. It can break through the duct wall and invade the breast's fatty tissue, then metastasize (spread) to other parts of the body through the bloodstream or lymphatic system.
  • Invasive lobular carcinoma — This type of breast cancer accounts for about 10 percent of cases and originates in the breast's milk-producing lobules. It also can spread to the breast's fatty tissue and other places in the body.
  • Medullary, mucinous and tubular carcinomas — These are three slow-growing types of breast cancer. Together they represent about 10 percent of all breast cancers.
  • Paget's disease — This type represents about 1 percent of breast cancers. It starts in the milk ducts of the nipple and can spread to the areola (dark circle around the nipple). Women who get Paget's disease usually have a history of nipple crusting, scaling, itching or inflammation.
  • Inflammatory carcinoma —This type accounts for about 1 percent of all cases. Of all breast cancers, inflammatory carcinoma is the most aggressive and difficult to treat, because it spreads so quickly.
  • Ductal carcinoma in situ (DCIS) — DCIS occurs when cancer cells fill the ducts but haven't yet spread through the walls into fatty tissue. Nearly all women diagnosed at this early stage can be cured. Without treatment, about 25 percent of DCIS cases will lead to invasive breast cancer within 10 years.
  • Lobular carcinoma in situ (LCIS) — LCIS is less common and less of a threat than DCIS. It develops in the breast's milk-producing lobules. LCIS doesn't require treatment, but it does increase a woman's risk of developing breast cancer.

Diagram of Women's Breast

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Common Symptoms?
A woman who has breast cancer may have no problems, or she may find a painless lump in her breast. If women examine their breasts monthly, they can help find lumps or other changes that a doctor should examine.

Most breast lumps are not cancer, but all lumps should be checked out by a doctor to be sure. Non cancerous breast lumps may be scar tissue or cysts (fluid-filled lumps or sacs) or they can be due to normal breast changes associated with hormone changes or aging.

Symptoms of breast cancer include:

  • A lump or thickening in the breast or under the arm
  • A clear or bloody discharge from the nipple
  • Persistent crusting or scaling of the nipple
  • Inverted nipples
  • Redness or swelling of the breast
  • Dimpling on the breast skin resembling the texture of an orange
  • A change in the contours of the breast, such as one being higher than the other
  • A sore or ulcer on the skin of the breast that does not heal
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What Causes Breast Cancer?
Many cases of breast cancer occur in women with no obvious risk factors. This means that women need to be alert in watching for possible changes in their breasts, performing self-examinations, and scheduling clinical breast examinations and mammograms. It is likely that multiple risk factors influence the development of breast cancer. Some of these include:

Age. The risk of developing breast cancer increases as a woman ages, with the majority of breast cancers developing in women over the age 50. At age 30, a woman's risk of developing breast cancer is one in 2,525. By age 50, her chances are one in 50, rising to one in 14 by age 70.

Race. Although white women are more likely to develop breast cancer, black women are more likely to die from the disease. The reasons for this are unclear and probably involve both socioeconomic and biologic factors.

Previous history of breast cancer. Women who have had breast cancer in one breast have three to four times the risk of breast cancer in their opposite breast.

A history of endometrial or ovarian cancer. The development of these cancers is also associated with exposure to hormones and, therefore, a woman's risk of breast cancer may also be increased. Some BRCA1 or BRCA2 gene mutations may also increase the risk of both ovarian and breast cancers.

A family history of breast cancer. Women who have a first-degree relative (mother, sister, daughter) diagnosed with breast cancer are at increased risk of the disease. More than one first-degree relative with breast cancer elevates that risk.

A genetic predisposition. Mutations to the BRCA1 or BRCA2 genes are associated with increased breast cancer risk. Screening tests are available to test for known mutations to these genes, but are not recommended for everyone and only following appropriate genetic counseling. Researchers estimate that breast cancers caused by these genes make up only 2% to 3% of all breast cancers.

Estrogen exposure. Estrogen is a hormone in women that controls the development of secondary sex characteristics (such as breast development). A woman's production of estrogen decreases at menopause. Doctors think that exposure to estrogen for a long time may increase breast cancer risk:

    • A long menstrual history: Women who began menstruating before age 12 or went through menopause after age 55 have a higher risk of breast cancer because their breast cells have been exposed to estrogen for longer periods of time.
    • Late or no pregnancies: Women who have their first pregnancy after age 30 or who have never had a full-term pregnancy have a higher risk of breast cancer. Pregnancy may protect against breast cancer because it pushes breast cells into their final phase of maturation.
    • Estrogen in medication: Recent use of oral contraceptives or hormone replacement therapy (HRT), or long-term use of HRT, may increase a woman's risk of breast cancer.

Atypical hyperplasia. This is a condition characterized by abnormal, but not cancerous, cells. Atypical hyperplasia is a risk factor of breast cancer.

Lobular carcinoma in-situ. This is associated with an increased risk of developing a cancer in either breast when found within an otherwise benign breast biopsy.

Lifestyle factors. As with other types of cancer, studies continue to show that various habits may contribute to the development of breast cancer. These include:

    • Obesity: According to a new study, being obese or even overweight increases a woman's risk of breast cancer.
    • Lack of exercise: Exercise lowers hormone levels and boosts the immune system; lack of exercise contributes to obesity.
    • Alcohol use: Drinking more than one alcoholic drink per day may raise the risk of breast cancer.

Radiation. High doses of radiation may increase a woman's risk of breast cancer. An increased risk of breast cancer has been observed in long-term survivors of atomic bombs, patients with lymphoma treated with radiation therapy to the chest, patients undergoing large numbers of x-rays for tuberculosis or non-malignant conditions of the spine, and children treated with radiation for tinea capitis (ringworm).

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Treatments for Breast Cancer
Even though the doctor will tailor the treatment for breast cancer to the patient's disease and personal situation, there are some general steps in the logic of treating the disease. Primarily, the initial therapy for early stage disease is aimed at eliminating any visible tumor. Therefore, doctors will recommend surgery to remove the tumor with or without radiation therapy.

The next step in the management of early stage disease is to reduce the risk of the disease recurring and to eliminate any cancer cells that may remain. If a tumor is of a certain size or lymph nodes are involved, the doctor may recommend additional therapy, such as radiation therapy, chemotherapy, or hormonal therapy. If the cancer recurs, the patient may choose additional surgery, depending on where the cancer is found, or a variety of treatments designed to fight distant metastases.

Surgery

Generally, the smaller the tumor, the more surgical options a patient has. The general types of surgery include the following:

  • Lumpectomy - A lumpectomy removes the tumor and a small "clean," or disease-free, margin of tissue around the tumor. Follow-up radiation therapy is given to the disease site.
  • Partial Mastectomy - A partial mastectomy removes the tumor, an area of normal tissue, and part of the lining over the chest muscle where the tumor was. This surgery is similar to a lumpectomy. It is also called a segmental mastectomy and requires follow-up radiation.
  • Modified Radical Mastectomy - A modified radical mastectomy removes the breast, some of the underarm lymph nodes, and the lining over the chest muscles.
  • Total Mastectomy - A total mastectomy removes the entire breast, leaving the underarm lymph nodes intact. This surgery is also called simple mastectomy.
  • Radical Mastectomy - A radical mastectomy removes the breast, chest muscles, all lymph nodes under the arm, and additional fat and skin. It used to be the standard surgical treatment for breast cancer, but is an uncommon procedure today. About 15% of women who have had radical mastectomies experience lymphedema, the buildup of fluid in the lymph system.

Women are encouraged to talk with their doctors about which surgical option is right for them. More aggressive surgery is not always better and may result in additional complications.

Choosing Between Lumpectomy and Mastectomy
One advantage of lumpectomy is that it saves the way the breast looks. A downside is the need for several weeks of radiation after surgery. But some women who have a mastectomy will still need radiation. For most women with stage I or II breast cancer, lumpectomy or partial mastectomy (along with radiation) is as good as mastectomy. There is no difference in the survival rates of women treated with these 2 methods. Other factors, though, can affect which type of surgery is best for you. And lumpectomy is not an option for all women with breast cancer. Your doctor can tell you if there are reasons why a lumpectomy is not right for you.

Possible side effects of mastectomy and lumpectomy include infection and blood or fluid collecting at the place where the incision is made. If lymph nodes are removed, there could be other side effects as well such as swelling of the arm (lymphedema).

Radiation Therapy and Chemotherapy are often used after lumpectomy or mastectomy to make sure that all the cancer cells are destroyed and do not grow back.

  • Radiation therapy almost always is recommended after lumpectomy to destroy any cancer cells left behind and to prevent the cancer from returning. Without radiation therapy, the odds of the cancer returning increase by about 25 percent.
  • The need for Chemotherapy depends on how much the cancer has spread. In some cases, chemotherapy will be recommended before surgery to shrink a large tumor so that it can be removed more easily. Chemotherapy is almost always necessary if cancer recurs. A form of chemotherapy called hormonal chemotherapy usually is recommended when the pathology report shows that the cancer is estrogen-receptor positive.
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After Treatment
After the first course of treatment is finished, it is very important to keep all follow-up visits to your doctor. Be sure and tell the doctor about any symptoms or side effects that concern you.

Lymphedema is a swelling of the arm caused by fluid build up that may occur after treatment for breast cancer. It's hard to tell which women will develop lymphedema. It can happen right after surgery, or months or even years later.

With care, lymphedema can often be avoided or kept under control. Injury or infection of the arm on the affected side can cause lymphedema or make it worse. Tell your doctor right away about any swelling, tightness, or injury to the hand or arm. There are ways to help prevent problems. More information about lymphedema is available through our toll-free number or on our Web site.

Treatment for breast cancer can affect the pleasure from touching the breast. In a reconstructed breast, the feeling of pleasure from touching the nipple is largely lost because a preserved or rebuilt nipple has much less feeling than a natural one. The skin of the breast itself may be less sensitive, too. Some feeling can return after time, though.

About Breast Forms and Bras
Some women who have had a mastectomy might choose breast forms instead of reconstruction. Your doctor will tell you when you are ready to be fitted for a permanent form. Prices of forms vary quite a bit. Take time to shop for one that looks good and fits well.

The right bra for you may very well be the one you have always worn. You can often have your usual bra adapted for a breast form. Be sure to check your insurance to see what is covered and how to file a claim. Also, ask your doctor to write prescriptions for your form and any special bras. When buying the forms or bras, have the bills marked "surgical."

Be aware that if you submit an insurance claim for a form or a bra, the company might not also cover reconstruction if you decide you want this procedure in the future. Get all the facts before turning in any claims.

Pregnancy
In the past, many doctors advised breast cancer survivors not to become pregnant for at least 2 years after treatment. Although only a few studies have been done, nearly all have found that pregnancy does not increase the risk of the cancer coming back after successful treatment. If you are thinking about getting pregnant, be sure to discuss the issue with your doctor. Sometimes counseling can help you sort out the complex issues about motherhood and breast cancer survivorship.

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Additional Information

National Organizations and Web Sites

Encore Plus Program of the YWCA
Office of Women's Health Initiatives
Telephone: 800-953-7587 or 202-467-0801
Call to find a program in your area.

National Breast Cancer Coalition
1101 17th Street, NW, Suite 1300Washington, DC 20036
Telephone: 800-622-2838 or 202-296-7477
Internet Address: www.natlbcc.org

National Cancer Institute (NCI)
Telephone: 1-800-4-CANCER
Internet Address: www.cancer.gov

Susan G. Komen Breast Cancer Foundation
Telephone: 800-IM-AWARE or 1-800-462-9273
Internet Address: www.komen.com

Y-ME National Breast Cancer Hotlines
Telephone: 1-800-221-2141 (English), 1-800-986-9505
(Spanish)Internet Address: www.y-me.org

Centers for Disease Control and Prevention (CDC) DES Update
Telephone: 1-888-232-6789
Internet Address: www.cdc.gov/des

 

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CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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