As you may have noticed, this website is changing! This will be an interactive blog where you can post a question answered by a certified lymphedema therapist. While the blog post itself will be free & visible to anyone, in order to post a question or see comments, currently you’ll need to register (which includes a small monthly fee to cover admin costs). This blog will be a great way to get your questions answered & connect with other users who may be dealing with the same issues as you! Please answer (4) questions to provide your input on these changes: SURVEY.
When you think of lymphedema, you probably think of an arm or a leg. You might think of the neck or chest. But the genitals?
Few people think of swelling in this area, but it can & does happen. Though not as often as other body parts, I have treated this area in both men & women. It’s extremely embarrassing for patients to have lymphedema here. But anywhere there are lymphatic vessels, there is potential for lymphedema. In the case of cancer, removal of inguinal nodes (lymph nodes in the groin) &/or radiation can contribute to development of genital lymphedema. Embarrassment is just one complication.
When there’s swelling, things can get messy. Urine flow may be misdirected (particularly in men). Clothing can be uncomfortable, mobility can be impaired & simply getting comfortable sitting can be a challenge. What about sexual function? What about body image & self-esteem? What about radiation burn, hypersensitivity or open wounds due to cancer? These are all subjects with which a therapist can help.
Everyone will present in their own way. For unconventional approaches, sometimes a therapist might get creative to problem-solve a solution (for example, designing a donut-shaped pillow for sitting if there’s a wound, discussing wound dressing options & infection prevention). In most cases, compression is needed to maximize volume reduction in additional to manual lymph drainage. Bandaging, foam inserts & compression shorts are all potential options depending on your situation. Other modalities such as cupping may be utilized as well to help break up fibrosis (firm skin caused by a scarring process).
If you’re struggling with this type of swelling or if you know someone who has had genital cancer & so may be at risk, know treatment is available. Click here (go to page 3) to see excellent videos about patients dealing with genital lymphedema. One man affectionately called his compression “ball crushers.” Now doesn’t that sound inviting?
Additional reading for men (caution – graphic content): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963354/
We’re currently undergoing a website modification. In the following months, we will be overhauling our website to include the addition of ebooks, video content, an interactive blog & more. For a brief period (to accommodate these changes), we’re not accepting new patients. But stay tuned!
There are three primary methods for treating cancer. These are surgery, chemotherapy (“chemo” for short) & radiation. Sometimes these methods may be combined. Depending on the type of cancer, additional treatment options might include bone marrow transplant, hormone therapy, molecular-targeted therapy, clinical trials & unconventional methods.
Surgery – Tumors may be removed or shrunk through surgery (often followed by chemo &/or radiation to treat any cells that may have spread). This surgery is localized to the tumor site & might be done with the old-fashioned surgical knife. However, there are also less extensive surgeries such as sentinel node biopsy, minimally invasive (like laparoscopy or thoracoscopy) & organ-preserving (e.g. lumpectomy). Newer approaches to destroy tumor tissue include focused sound waves (i.e. ultrasound), cold (cryotherapy), radiowaves (radiofrequency ablation) & light (phototherapy).
Chemotherapy – A drug or combination of drugs primarily administered orally, through injection or through a vein (via a catheter such as a PICC line or a port (i.e. a device placed under your skin on the chest). Chemo is a systemic treatment, meaning it affects the whole body. It targets fast-growing cells which include not only cancer cells but other fast-growing cells like skin, hair, bone marrow (including white or red blood cells & platelets) & cells that line your digestive tract (such as stomach & mouth). Fortunately, the side effects from damage to healthy cells (such as nausea or diarrhea) can often be managed during treatment & other side effects (such as hair loss, dry skin or skin rash) usually go away.
Radiation – High-energy radiation is delivered to the tumor(s) by a machine via an external beam (i.e. X-Ray or gamma ray) or internally (via radioactive material placed in the body near the tumor or via systemic administration called brachytherapy). The purpose of radiation is to shrink or kill the cancer cells by damaging their DNA. Unfortunately, normal cells can also be damaged leading to long-term effects such as fibrosis & lymphedema. However, doctors have an idea of how much radiation normal tissue can receive & take this into consideration when planning your treatment course.
Coleman, Norman, MD (2006). Understanding Cancer, p. 85-106. Baltimore: The John Hopkins University Press.
In March’s blog, we discussed what cancer is. We said,
“When a cell is told to multiply, it begins a multi-step process which has “checkpoints.” These checkpoints inspect the cell, ensure it is progressing normally & allow it to continue its development. If a cell is found defective (i.e. several genes have changed or mutated), it will usually self-destruct or it will be removed by other cells (thanks to our immune system). This process is programmed so there is a balance between the cells that multiply & those that die. In cancer, however, this process is defective. Instead of self-destructing or being removed, the defective cell passes through the checkpoints & multiplies at-will.”
This describes one reason people get cancer: Cells malfunction (usually as a result of age or genetic predisposition). However, environmental factors may also contribute. For example, chemicals found in pesticides or in cigarettes (or other forms of tobacco use). UV radiation from too much sun exposure or sunburns has been linked to cancer development. Behavioral factors may also increase risk. For example, an unhealthy diet & sedentary lifestyle can lead to obesity* which increases the risk of developing cancer. Smoking, heavy/regular alcohol consumption, chronic stress & hormones (such as menopausal therapy or oral contraceptives) do as well.
*Obesity & other conditions that cause chronic inflammation (such as chronic inflammatory bowel diseases – e.g. Crohn’s Disease – or even untreated lymphedema) has been linked to cancer. The longer chronic inflammation persists, the greater the risk of cancer development.
If you or someone you know has been given a diagnosis of breast cancer, you may have heard unfamiliar terms like “in situ,” “ductal,” “invasive,” “lobular,” “inflammatory” & “carcinoma.” What do these words mean?
When the breast creates milk, it begins in a lobule. Once the lobule develops milk, the liquid flows through the milk ducts & exits through the nipple. When cancer cells develop in one of these areas, the cells may stay within that site or they may invade other parts of the breast tissue. “In situ” & “invasive” describe what the cancer cells have done. If the cancer has not spread to surrounding breast tissue, it is said to be “in situ” (i.e. in its original site). If the cancer has spread beyond the borders of its original location & invaded surrounding breast tissue, it is said to be “invasive.” The words describing the involved breast area & what the cancer cells have done are combined to form the name of a particular type of breast cancer:
- Ductal – refers to the milk ducts of the breast
- ductal carcinoma in situ (or DCIS for short) means the tumor (or cancer mass) is contained within the milk ducts
- invasive ductal carcinoma (or IDC for short) means the tumor growth has broken through the duct wall & spread to the surrounding breast tissue
- Lobular – refers to the lobule milk glands
- lobular carcinoma in situ (or LCIS for short) means cells that look like cancer are growing in the milk glands; this type isn’t considered cancer yet – it is, however, a condition that needs to be watched
- invasive lobular carcinoma (or ILC for short; also called “infiltrating lobular carcinoma”) means the tumor growth has broken through the lobule wall & spread to the surrounding breast tissue
For a diagram of the breast anatomy & above types of cancer, click: http://www.breastcancer.org/pictures/types
- carcinoma – refers to any cancer that begins in the skin or other tissue that cover organs
- inflammatory – refers to the description of inflammatory symptoms accompanying this type of cancer (tenderness, warmth, redness, swelling, &/or an orange-peel appearance to the skin).
- inflammatory breast cancer (or IBC for short) means an inflammatory response within the breast tissue caused by cancer cells blocking the flow of lymph fluid. Note: While an antibiotic should improve symptoms caused by an infection or mastitis, it will not help this condition. Be sure to notify your doctor if you’ve been prescribed an antibiotic but your symptoms haven’t gone away.
It’s worth noting there are other types of breast cancer not mentioned. A comprehensive list includes:
ductal carcinoma in situ
invasive ductal carcinoma
lobular carcinoma in situ
invasive lobular carcinoma
mucinous or colloid
and even less common:
Kneece, Judy, RN, OCN (2012). Breast Cancer Treatment Handbook (8th ed), p 20-21, 66. South Carolina: EduCare
In our last blog, we described what cancer is. In this blog, we’ll outline the different types of cancer (listed below). A starting point to understanding the different types of cancer is to understand how a particular type of cancer gets its name. Cancers are named based on their appearance & what part of the body they originate in. For example, breast cancer is named “breast cancer” because the cancer is located in breast tissue. Lung cancer is named “lung cancer” because the cancer is located in lung tissue & so on. It’s important to note, however, that even if the cancer progresses (i.e. metastasizes) to other body parts, it is still named based on its original location. For example, breast cancer which has metastases that go to the lung(s) isn’t called “lung cancer,” it’s called “metastatic breast cancer.”
Breast Cancer – the number one cause of lymphedema in the United States
- Ductal carcinoma in situ
- Lobular carcinoma in situ
- Invasive ductal carcinoma
- Invasive lobular carcinoma
- Inflammatory breast cancer
- Small-cell lung cancer
- Non-small-cell lung cancer
- Basal cell carcinoma
- Squamous cell carcinoma
- Neuroendocrine carcinoma
- Colon & Rectum
Genitourinary Cancers (cancer of sexual organs & urinary organs)
Hematological Cancers (cancer of the blood & stem cells)
- Multiple Myeloma
Head & Neck Cancers
- Oral cavity
- Nasal cavity
- Thyroid gland
Sarcomas (cancerous tumors of soft tissue & bone anywhere in the body)
- Osteosarcomas (primary bone sarcomas)
- Soft tissue sarcoma (such as tumors arising from fat tissue, muscles, nerves, blood vessels, etc.)
Brain & Spinal Cord Tumors
- Glioma (tumors that start in glial cells)
- Meningioma (tumors that start in the outer lining of the brain)
- Acoustic Neuromas & Schwannomas (tumors that develop from Schwann cells – which line the cranial & peripheral nerves)
- Medulloblastoma (which arise from fetal cells in the cerebellum; more commonly found in children but they can be found in adults)
Smith-Gabai, Helene (2011). Occupational Therapy in Acute Care, p. 416-426. Maryland: The American Occupational Therapy Association, Inc.
Coleman, Norman, MD (2006). Understanding Cancer, p. 43-45. Baltimore: The John Hopkins University Press.
National Cancer Institute
American Cancer Society
National Comprehensive Cancer Network
p. 85 Understanding Cancer book
Science has come a long way in treating cancer, but cancer is a word that still causes anxiety for most who receive (or have loved ones who receive) the diagnosis. That anxiety is complicated by several unknowns – starting with understanding what cancer is (in user-friendly terms). Cancer (specifically, breast cancer) is the number one cause of lymphedema in the United States & so finds its way on our blog. This series will address cancer, what it is, how it may be developed, treatments & other related topics.
So, what exactly is cancer? The simple answer is cells multiplying (i.e. dividing themselves) out of control. For a deeper insight, let’s take a look at what happens on a biological level.
Our bodies are made up of cells, many different types of cells which have different functions. For example, there are muscle cells, bone cells, blood cells, skin cells, defense cells, etc. Some cells continue to multiply throughout their life (like blood & skin cells) while others stop multiplying when their type is complete (cells in our nervous system). Normal cells only multiply when they are told to do so by
- growth factors (usually a protein or hormone) &
- cytokines (“messenger” proteins)
When a cell is told to multiply, it begins a multi-step process which has “checkpoints.” These checkpoints inspect the cell, ensure it is progressing normally & allow it to continue its development. If a cell is found defective (i.e. several genes have changed or mutated), it will usually self-destruct or it will be removed by other cells (thanks to our immune system). This process is programmed so there is a balance between the cells that multiply & those that die. In cancer, however, this process is defective. Instead of self-destructing or being removed, the defective cell passes through the checkpoints & multiplies at-will. Amazingly & thankfully, this breakdown doesn’t happen very often.
Kumar, V., Abbas, A., Aster, J. (2013). Robbins Basic Pathology (9th ed.), location 1644ff. Pennsylvania: Elsevier Saunders.
Coleman, Norman, MD (2006). Understanding Cancer, p. 28ff. Baltimore: The John Hopkins University Press.
Smith-Gabai, Helene (2011). Occupational Therapy in Acute Care, p. 410. Maryland: The American Occupational Therapy Association, Inc.
The Women’s Health & Cancer Rights Act (established in 1998) requires most group health insurance plans which cover mastectomies to also cover breast reconstruction & associated treatment costs (such as lymphedema). But changes still need to be made. Medicare does not cover compression for lymphedema (& consequently many other insurance providers do not cover compression). As a result, the compression supplies needed during & after treatment are often not available for patients who require them but cannot afford them. Consequently, mobility becomes more difficult & self-care independence is reduced while lymphedema becomes worse with chronic infections, tissue changes & repeated hospitalizations. However, you have an opportunity to make a difference! Please contact your congressmen. We’ve made it easy for you below (simply click on the link).
Contact your congressmen by visiting: http://www.capwiz.com/lymphedematreatmentact/issues/alert/?alertid=68841626&type=CO
Find out more about the Lymphedema Treatment Act by visiting: http://lymphedematreatmentact.org/about-the-bill/
Sigvaris began as a Swiss dress & fabric shop in 1877 by a family called Ganzoni. One of the family sons (Werner Ganzoni) headed up the Swiss business while a brother (Paul) opened a shop in France. In 1924, they opened their own production company in Saint Louis (a European town bordering Germany & Switzerland) & in 1926 they reinvented themselves with finer rubber yarns & wider elastic fabrics. This latter transition yielded belts, suspenders, socks, stockings & stocking suspenders. In 1928, Ganzoni purchased a stitching company in St. Gallen, Switzerland. After several uncertain years due to WW I & II, in 1947 a son (Peter), took over business. In 1961, the first medical compression stocking based on latex was introduced under the name “Sigvaris.” The elastic band-weaving portion of business was sold & a concentrated effort was placed on medical compression stockings in order to stay afloat. Medical compression proved to be their best asset, & they have continued to expand not only in Europe but overseas as well.
Sigvaris manufacturers four categories of compression which include medical, well-being, sports & arm sleeves. Their focus is primarily on venous disorders but venous disorders can develop into lymphedema, so their compression can be beneficial for some lymphedema patients. Their products are ready-made & come in ready-made compression grades. For more information regarding Sigvaris & their products, visit: http://www.sigvaris.com/usa/en-us.