“How can I interpret my prognosis”
When first diagnosed with cancer, many people ask about their prognosis. You may want to know whether your cancer is relatively easy or more difficult to treat. Your doctor can’t predict the future, but can make a projection based on other people’s experiences with a similar cancer. Cancer survival rates or survival statistics tell you the percentage of people who survive a certain type of cancer for a specific amount of time. Cancer survival rates are typically calculated on a 5-year time scale. This is not a rule and it varies depending on the individual circumstances: the grade of the tumor, location, how aggressive it is, race, sex, how early it was diagnosed, socio-economic status. These rates are based on research from information gathered on hundreds or thousands of people with a specific cancer. An overall survival rate includes people of all ages and health conditions who have been diagnosed with a specific cancer, those diagnosed early and those diagnosed very late.
For example, if a specific type of cancer, in its early stages, has a survival rate of 85%, then roughly 85 out every 100 people are living five years after receiving this diagnosis. It is important to note that the earlier a cancer is diagnosed, the better the chances of survival. If detected in the later stages of its development, the survival rate can drop drastically. This is the reason that self-exams and knowledge of our bodies is so important. We are the ones most likely to notice changes first.
Overall survival rates don’t specify whether cancer survivors are still undergoing treatment at five years or if they’ve become cancer-free (achieved remission). Other types of survival rates that give more specific information include:
* Disease-free survival rate. This is the number of people with cancer who achieve remission. That means they no longer have signs of cancer in their bodies.
* Progression-free survival rate. This is the number of people who still have cancer, but their disease isn’t progressing. This includes people who may have had some success with treatment, but the cancer hasn’t disappeared completely.
Cancer survival rates often use a five-year survival rate. That doesn’t mean cancer can’t recur beyond five years. Certain cancers can recur many years after first being found and treated. For some cancers, if it has not recurred in five years after initial diagnosis, the chance of a later recurrence is very small. Discuss your risk of cancer recurrence with your oncologist.
Ask your doctor to help you understand your prognosis and to develop a treatment plan based on how people with your same cancer type and stage have responded to treatment. For instance, if two treatments give you similar chances for remission, but one has more side effects, you might want to choose the option with fewer side effects.
The Cancer Resource Center staff and volunteers are here for you to talk about your questions and concerns. We provide you with information and resources to assist you during each phase of your cancer experience. We are open Monday-Friday from 9AM-5PM if you wish to speak with one of our staff members about your situation and to receive additional resources.
“I was recently diagnosed with cancer and my doctor mentioned Tumor Markers. What are they and are they found in all types of cancers?”
Tumor markers are substances (usually a protein) that may be elevated when there is cancer in the body. They also can be present when there are non-cancer (benign) conditions. The tumor markers can be found in the blood, urine or tissues. Some substances used as tumor markers are made naturally in the body, and a “normal level” is not always zero.
There is not a known tumor marker for each type of cancer. When cancers have an identified tumor marker, physicians often use them to track how a patient’s cancer responds to treatment. A physician will not make a change in treatment just based on tumor markers but will include them with information from CT and PET Scans and physical exams, along with any changes in symptoms the patient may be experiencing.
In some cancers, but not all, tumor markers are used to watch for recurrences. Tumor markers may be used along with other tests to help diagnose cancer.
The only tumor marker currently used for screening purposes is the PSA (prostate cancer) but it is not always an accurate predictor.
Please contact your physician about questions you may have about tumor markers and your type of cancer.
“What options do I have to cover my head while I am doing chemo?”
For many women, wigs are the answer when they lose their hair. Many women have found that it is best to cut their hair short before they start chemotherapy. It’s less traumatic to lose short clumps of hair than long ones—and it’s easier to fit a wig over less hair.
If you get used to short hair, you won’t have to wait as long for your hair to grow back to feel like yourself. Shorter is also cooler—an important consideration because wigs can feel hot in the summer. Short haired wigs are also easier to wear and care for. Look through salon books and hairstyle magazines to find the haircut that’s right for you, or get advice from your current hairstylist.
Try to pick your wig before chemotherapy begins. You can get used to wearing the wig in trial sessions, alternating with your own hair. Wigs come in all styles and colors, and can be styled and colored especially for you. You will find that Synthetic Hair wigs are easy to take care of and Human Hair wigs require a bit more maintenance. Synthetic hair wigs generally (sell for lower prices) cost less than a human hair wig.
Some women find wigs to be hot and uncomfortable so turbans or hats can be a lovely alternative. An advantage of the Boutique at the Cancer Resource Center is that you can make a free selection of all kinds of headwear and take them home and try them out.
The types, colors, and styles of turbans, hats, and scarves are limited only by what is available at any given time at Cancer Resource Center. Most have been made and donated by generous people in the area. Once you have found some options that meet your needs, you may choose to buy similar ones online. Turbans, hats, and scarves are available online through several catalogs.
The Cancer Resource Center has many different wigs, turbans, hats and scarves, of many colors or fabrics. Mix it up with many different styles and colors to keep it interesting. There are also many websites and blogs with tips and tricks for make-up and head covers. Check out the videos on youtube with demonstrations of scarf tying/wrapping ideas. Also, if you are crafty, there are many patterns on the internet when you search “chemo hats patterns free” which would allow you to choose your own fabrics or yarns.
You decide the best option for your head while doing chemo. It may be going without hair. The most important thing is to remember that you are a beautiful person. This is often a time when your inner beauty and strength come to light. Embrace your beauty and shine with confidence!
The Cancer Resource Center staff and volunteers are here for you to talk about your questions and concerns. We provide you with information and resources to assist you during each phase of your cancer experience. We are open Monday-Friday from 9 AM-5 PM if you wish to speak with one of our staff members about your situation and to receive additional resources.
“I am currently in treatment and am experiencing anxiety, fatigue and having problems sleeping. My care team suggested that yoga may be beneficial. What is yoga? How does it help? I have never done yoga before, can I start now?“
There have been some studies showing that practicing yoga before, during and after treatment can help to reduce distress, anxiety, depression and tiredness (fatigue). It’s also been shown that yoga helps to improve quality of life, emotional well being and social well being. The Cancer Resource Center offers a FREE Gentle Yoga class every Tuesday morning from 9:30-11am at Island Fitness. No previous experience is necessary and you do not need to preregister. When you arrive at Island Fitness, go to the desk, sign in and they will direct you to the yoga room. You do not need to wear anything special, just wear something comfortable that you can move and stretch in. If you go to another yoga class, be sure to let your instructor that you are a cancer patient prior to starting the class. For any questions, please call the Cancer Resource Center at 607-277-0960.
“I am currently in the middle of chemotherapy treatment. I am starting to experience side effects, especially dry and tight skin, fatigue, some hair loss, nausea, etc. Can you help?”
What you are experiencing is not uncommon. We urge you to share what you are going through with your oncologist and chemo nurses who can help you and below is a link to information on coping with the various side effects of treatment.
“Look Good Feel Better,” held at CRC and sponsored by the American Cancer Society, is a monthly program designed to help women deal with the skin changes from radiation and chemotherapy that you mention above. Trained professionals share techniques on how to address these issues in a private and supportive environment. Our next program is on Wednesday, September 26 th from 1-3pm. Please call our office for more information.
The CRC Boutique also has a number of items including wigs, turbans, creams and chap sticks that can help reduce the side effects of treatment. We hope you will visit us soon!
“I have just been diagnosed with cancer and have 2 school-age children. I am worried about my cancer overshadowing their needs, when and what to tell them, and how I can take care of myself and ensure that my spouse and I also take good care of them?”
We are so glad you wrote. Your concerns are very common and very normal. When a parent/caregiver is diagnosed with cancer, the entire family is affected and the needs of the children also must be addressed. Children of parents/caregivers with cancer often experience anxiety, depression, and uncertainty related to their loved one’s diagnosis. The focus understandably, especially initially, is on the needs of the person with cancer and children’s lives are sometimes disrupted.
The Cancer Resource Center helps families cope with the stress of a cancer diagnosis and provides assistance with expanding their care network. Our approach is to provide supportive one-to-one assistance to children so that they can share their feelings. We connect families with resources to help children navigate their family’s unique cancer experience with age-appropriate compassion and understanding.
Thanks to the generosity of an anonymous donor, we can connect families to short-term therapeutic resources. In addition, we can provide financial assistance to those who lack the resources to pay for it. Our staff at CRC will listen to your needs and refer you to a local therapist who has experience with children or teens and working with families affected by a major illness. In addition we provide supervised play/activities for school-aged children while the parents are attending some of our support groups.
At CRC we know that communication and education are the foundation for providing social support to children within the family. We have established a program “CRC Cares About Kids” to address the needs of children and help parents answer questions like: How much information do I need to share? Should I talk about the cancer treatment? Should I tell my children about potential side effects (hair loss, fatigue, and physical difficulties), etc.?
The Cancer Resource Center staff and volunteers are here for you to talk to about your questions and concerns. We provide you with information and resources to assist you during each phase of your loved one’s cancer experience. Please contact us at (607) 277-0960 if you have questions or would like to receive a “CRC Cares About Kids” folder.
because no one should face cancer alone….
“What is my role as a caregiver?”
With an increasingly aging population in all developed societies, the role of caregiver has been highly recognized as an important one, both functionally and economically.
A caregiver is an unpaid or paid person who takes care of someone who has a chronic illness or disease; managing medications or talking to doctors and nurses on someone’s behalf; helping to bathe or dress someone who is frail or disabled; or taking care of household chores, meals, or bills for someone who cannot do these things alone.
There are different types of caregivers. Some are family members, while others are friends. Every situation is different. So there are different ways to give care. Much depends on the needs of the patient, your relationship with the patient, and where you live. Your role is to give love, support and comfort, but remember, you can do anything but not everything.
Caregiving can mean helping with day to day activities such as doctor visits or preparing food, but it can also happen long-distance. You may have to coordinate care and services for your loved one by phone. Caregiving can also mean giving emotional and spiritual support. You may be helping your loved one cope and work through the many feelings that arise at this time. Talking, listening, and just being there are some of the most important things you can do. Giving care and support during this challenging time is not easy. The natural response of most caregivers is to put their own feelings and needs aside. This may be fine for a short time but it can be hard to keep up for long. And it’s not good for your health. If you don’t take care of yourself, you won’t be able to take care of others. Self-care is very important. You can be the best caregiver you can be by taking care of yourself.
The Cancer Resource Center staff and volunteers are here for you to talk to about your questions and concerns. We provide you with information and resources to assist you during each phase of your loved one’s cancer experience. Please contact us at (607) 277-0960 if you have questions or would like to receive a “Caregiver’s Guide” booklet. We also provide a Caregiver support group that meets on the second Tuesday of each month from 5:30pm – 7:00pm.
Sources of Information:
- Cancer Resource Center “Caregiver’s Guide” (www.crcfl.net)
- National Cancer Institute (www.cancer.gov)
- Medline Plus (https://medlineplus.gov/)
- CancerNet (www.cancer.net)
“I have chosen to have genetic testing to determine my cancer risk. Now, I have an appointment with a genetic counselor. What will happen at this appointment and what questions should I ask?”
Once your results have returned from the lab, a genetic counselor will schedule a post-test disclosure appointment. At this appointment the counselor should:
- Interpret and explain test results and what they mean for you and your relatives
- Provide you with your cancer risk estimates based on your test results
- Outline appropriate cancer risk management and treatment options
- Provide referrals for follow-up screening and risk management, and suggest any relevant clinical trials
- Identify which relatives may also be at high-risk and provide you with information to share with relatives
- Address common concerns about the privacy and confidentiality of personal genetic information
Questions to ask will depend on what is said at your appointment. If the counselor did not mention any of the above items, ask about that.
- How certain are you about the results we’ve discussed today?
- Especially if the answer to #1 is low certainty…Are there any follow up tests I could do to increase the level of certainty?
- Should I repeat this test at any point in the future?
- Are there any lifestyle changes I can make that would decrease my risk of developing cancer in the future? Anything to avoid?
“My Doctor said I have no more treatment options left and I should consider Hospice. I currently feel fine, is it too early to consider Hospice? Do I have to leave my home to get Hospice Care?”
Hospice care is not a place but a type of care. The focus of hospice is that we all have the right to die pain free and with dignity. Hospice provides care and support not only for the patient but for your loved ones too. Hospice looks at the patient, family and the disease process from a holistic perspective. It addresses the physical, emotional, social and spiritual needs of each person. Hospice wants to help the patient live the best quality of life possible for as long as possible. It focuses on helping to make sure that every day will be the best it can be instead of curing the disease. Hospice does not do anything to hasten or delay death.
Hospice can be provided in your home, hospitals, nursing homes, long term care facilities or a freestanding hospice center. Hospice services are available to patients of any age, religion, race,or illness.Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations.
The following perspective was shared by the caregiver, and one of our clients “BP”, who recently started hospice:
From BP’s Caregiver
“There is so much stigma still attached to Hospice, what it means as well as what it offers… it is a tool… it is a tool that will make ( already has) our lives go more smoothly. It is a tool that gives us access to a mirage of resources.
It carries a lot of emotions, this tool called Hospice. We all conger up images of near death… We plus the bigger WE have to change that image. It is here to help ease the road… to allow better quality of time living.
So now I live with my phone ringer on, I answer all calls and I have a Hospice hotline sticker on the back of my phone… I don’t plan on needing to use it anytime soon, BUT I have it . We have given ourselves the gift of peace of mind… of having a team to go through this journey with us”
“You are not alone when thinking of hospice as a place to die. That notion is a common myth. Our decision to sign up for hospice has much more to do with my quality of life than it does about my dying.
What turned my head around was realizing that we could have peace of mind knowing a team was in place for when we need them. No ERs, no hospital stays, less panic of what to do in the middle of the night. It’s like having a Bat Phone. You know, like Commissioner Gordon of Gotham City had a direct line to Batman. Oh come on people!
It’s every bit a tool as an adapted spoon for self feeding or a wheelchair for mobility. As valuable a resource as an Independent Living Center or Guide Dogs for the Blind.
Hospice, what it means as well as what it offers… it is a tool.”
If you have any questions or concerns, please contact your local Hospice Care.
“My Doctor suggested a Palliative Care Consultation. Do they mean Hospice and am I going to die soon?”
No, palliative care does not mean your death is imminent. However, palliative care does help many people with life-threatening or terminal illnesses. It also can help patients stay on track with their health care goals
Palliative care provides those with a serious or chronic illness – from the time of diagnosis throughout the course of treatment – care that optimizes quality of life by anticipating, preventing, and managing suffering for patients and families facing life threatening illnesses. Palliative care is a relatively new field that is generally provided by a team of specialists such as physicians, social workers, chaplains, pharmacists, nutritionists, physical and occupational therapists.
The goal of palliative care is to improve the quality of life for you and your family. It is appropriate at any time during an illness and it can be provided at the same time you are receiving treatment that is meant to cure you.
Who can benefit for palliative care?
Anyone with a chronic or serious illness such as cancer, heart and lung disease, Parkinson’s or dementia along with many other conditions.
Who pays for Palliative Care?
This is a good question to ask when you are deciding if you are going to start palliative care. It is often handled much like a referral to a cardiologist, neurologist or other specialist and may be covered by Medicare, Medicaid or your private insurance.
The Palliative Care team can help with:
- recommendations for treatment of pain and other symptoms that are not responding to the usual therapies
- communication between you and your family
- navigating the healthcare system
- opportunities for helping with discussions about your goals
- emotional support for you and your loved ones.
- connecting with local community resources.
- coordination of care with all team members
- NIH-National Institute of Aging
- Oncology Nurse Advisor
- Palliative Doctors
- Start the Conversation
Next month: What is Hospice?
“Am I more likely to develop cancer as I get older?”
Although cancer certainly can and does strike young people, it is, by and large, a disease of aging. The risk of receiving a diagnosis of different types of cancer varies throughout a person’s life span, however, the cumulative risk for all cancers combined increases with age, up to age 70 years and then decreases slightly. A substantial proportion of older adults will reach the end of their life span without clinically detected cancer. The old idea that cancer is less aggressive in the elderly is not entirely without merit: breast and prostate cancers tend to grow more slowly in older patients. But other types—colon and bladder cancer and certain leukemias, for example—are usually more aggressive and harder to treat. This may be in part due to age-related genetic mutations – as we get older, we accumulate more changes in our DNA which means an increased likelihood of cancer.
As life expectancy has increased and the number of older Americans has grown, so have efforts to promote healthy aging. Cancer has many contributing causes – genetic factors, environment, and lifestyle (exercise, nutrition, sleep, stress, tobacco, alcohol) – only some of which we can manage. Maintaining a healthy diet, refraining from smoking and excessive alcohol use, and engaging in moderate levels of physical activity are healthy behaviors that provide the optimum level of health. Our eating behaviors can reduce the risk of getting cancer but we can’t completely prevent it. Healthy eating calls for opting for more vegetable sources of protein, fruits, vegetables and whole grains.
The Cancer Resource Center staff and volunteers are here for you to talk about your questions and concerns. We provide you with information and resources to assist you during each phase of your cancer experience.
Source: Nat Center for Biotechnology Information (NCBI), Scientific American, National Library of Medicine (NLM), National Institute of Health (NIH) Source: Scientific American.
“I was recently told that I need a bone marrow biopsy. What is bone marrow and what cancers are they looking for?”
Not all bone marrow disorders are cancer! There are types of anemia and other disorders of the bone marrow that are not cancer.
There are three main types of blood cancers that can be detected by looking at the bone marrow:
1. Leukemia – caused by the over production of abnormal white blood cells which are made in the bone marrow and enter the blood. The abnormal cells can’t fight infection and prevent the bone marrow from producing other healthy blood components.
2. Lymphoma – caused by the over production of lymphocytes – a type of white blood cell found in the lymphatic system. Abnormal lymphocytes become lymphoma cells that multiply and collect in lymph nodes and other tissues.
3. Myeloma – is a cancer of the plasma cells. Normal plasma cells are a kind of white blood cell that produce antibodies – which fight disease and infection. Myeloma cells (abnormal plasma cells) make antibodies that do not work; they cause problems in the body instead. Myeloma cells are made in the bone marrow, but can travel in the blood to other bones and multiply in these new sites; this is referred to as multiple myeloma.
“I just found out my mom’s cancer has metastasized. I know that means it has spread but that’s about all I know about it.”
Thank you for writing. Finding out new information about a loved one’s cancer can be overwhelming, especially if you are not sure where to get additional,credible information.As you may be aware, when a cancer has metastasized, it means that it has spread from it’s original site in the body to another part of the body. A more thorough definition from the National Cancer Institute states that metastasis is:
The spread of cancer cells from the place where they first formed to another part of the body. In metastasis, cancer cells break away from the original (primary) tumor, travel through the blood or lymph system, and form a new tumor in other organs or tissues of the body. The new, metastatic tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the lung, the cancer cells in the lung are breast cancer cells, not lung cancer cells.
When obtaining new or additional information on a diagnosis, asking one’s doctor (or loved one’s doctor with their permission) for more information is a good first step. We suggest that you write your questions down and take notes on the answers, as what you learn may be a lot to absorb all at once and your notes can be a good reference for future questions.
In addition, obtaining information from a few good, reliable, evidenced-based resources, so you don’t overwhelm yourself with too much or non-accurate information is a good next step. Below are some good sources of information on metastatic cancer:
- article about metastasis in the New Yorker by Siddhartha Mukherjee.
(He won the Pulitzer Prize for his book, “The Emperor of All Maladies.”
“I was recently diagnosed with cancer and I’m in the middle of treatment. I’m doing okay so far and am tolerating chemo better than I expected. I am usually the one who organizes everything for the holidays, decorates, gets everyone together,etc. I want to partake in some festivities, however, I’m not up to having the level of holiday activity we usually do. I don’t want to disappoint my family and because they know I’m doing fairly well right now, their expectations may be high. Not sure how to approach this.”
- Tips on surviving the holidays
- Cancer and the holidays
- Coping with cancer during the holidays
- And for loved ones: Caregiving during the holidays
“My wife recently was recently diagnosed with cancer and I want to care for her and support her through her treatment the best I can. I am a first time caregiver and don’t know much about what to do or where to start. Can you help me?”
There are many tasks you may be doing including accompanying her to medical appointments, getting and preparing food, and helping with medications. Remember to take it one step at a time, ask for help, and make time to take care of yourself. This may sound counter-intuitive because you want to focus on helping your wife, however if you don’t take care of yourself, you won’t be able to care for her effectively.
You may want to participate in our caregiver support group that meets at 5:30pm on the second Tuesday of every month at CRC, and/or talk through your concerns with a CRC staff member. Below are some additional resources to guide you:
“I just found out that both a friend and a family member were recently diagnosed with different types of cancer. I know almost nothing about cancer. I want to learn about it but I don’t even know the best Web sites to visit. I also want to be a true support to my loved ones and don’t know where to start.”
It’s easy to get overwhelmed by the amount of information (and disinformation) on the internet. There are reputable Web sites such as the National Cancer Institute, Medline Plus and OncoLink with information that is evidence-based and provided by medical experts in cancer diagnosis and treatment. Also, CRC’s Web site is another good place to start.
“I have recently finished cancer treatment and I thought I’d be on top of the world. Instead, I feel anxious, lonely, fatigued, and forever wondering when my life will turn back to normal. I can’t figure out what’s going on with me!”
You are not alone in these feelings. We have heard similar concerns from many individuals following active cancer treatment. In fact, many people join support groups at this time to deal with the impact that cancer continues to have on their lives.
During treatment you were surrounded by doctors, nurses and other caring people. Once it ends, it makes sense that there is a void. Many people who share similar feelings talk about their “new normal.” Things can get better. It’s important to be patient with yourself and give yourself time to heal and adjust.
We have recently developed a new page on our website that addresses these issues. You could also join one of our support groups & talk with others who are going through similar experiences. Lastly, here is an article that discusses many of the feelings you’re experiencing.
“I keep hearing the term “advanced care planning”and I’m wondering what that is all about.”
Advanced care planning refers to making your wishes known in advance in case you’re unable to speak for yourself because of illness or injury. Living wills like “Five Wishes,” health care proxies, “do not resuscitate” orders, and other mechanisms allow you to express your wishes and/or appoint the person you wish to make medical decisions on your behalf.
While everyone is encouraged to do advanced cancer planning, it’s especially important for people with cancer or any serious illness. If you have cancer, you know all too well that life and well-being can change in an instant.
Advance care planning can include:
- Sharing your personal values with your loved ones and your physicians. What’s most important to you? Do you want to aggressively treat your cancer as long as possible, or are you more interested in comfort measures?
- Putting into writing what types of treatment you would or would not want should you be unable to speak for yourself.
- Planning your funeral or memorial service.
It’s common for people with cancer to feel that too much is out of their control. Advanced care planning is an opportunity to maintain control – by expressing your wishes in advance. Doing so often brings a sense of relief, and it’s one less thing to worry about.
Here are a few helpful resources:
“I was just diagnosed with lymphedema. My doctor said there is no cure. What kind of treatment is available to help me?”
Yes, there is currently no cure for lymphedema but the treatment focuses on reducing the swelling and controlling the discomfort.
Once you have been diagnosed with lymphedema, it is advisable to visit a lymphedema clinic to start your treatment. Everyone is different as to the type and extent of the treatment but some of the treatments include:
Exercises: Light exercises can help encourage the lymph fluid to drain plus they can help prepare for everyday tasks. These are not strenuous exercises but they focus on mild contraction of the muscles in your arm/leg.
Bandaging your arm or leg: Bandages that wrap your entire arm or leg help encourage the flow of the lymphatic fluid towards your trunk. A lymphedema specialist can show you how to wrap your arm with a special bandage (don’t use an ACE bandage).
Massage: Lymphatic massage by a lymphedema specialist (see below how to find a specialist) can help encourage the flow of lymphatic fluid and reduce the amount of swelling. This should not be done by someone who has not had the specialized training.
Pneumatic compression: A sleeve is worn over your affected arm or leg that connects to a pump. The pump intermittently inflates the sleeve starting at your fingers or toes that helps to move the lymph fluid up towards your trunk.
Compression garments: These garments are long sleeves or stockings that compress your limb to help move the lymph fluid out of your arm. You need to be measured for your sleeve prior to purchasing a sleeve as there are several different sizes and compression levels. A lymphedema specialist or a medical garment fitting specialist can do this. Some people will require custom made sleeves.
Surgery: There are two new surgical options to treat lymphedema: Vascularized lymph node transfer surgery or lymphovenous bypass. These are an intricate microsurgical procedure used to treat patients with advanced lymphedema affecting the skin tissue in the arms or legs. These options are only available at select large medical centers.
Cancer Resource Center 277-0960
How to find a lymphedema specialist
“I just had breast surgery and one of the side effects mentioned was lymphedema. What is lymphedema and how can I prevent it?”
Lymphedema is a condition that is caused by a blockage in the lymphatic system. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment. When axillary lymph nodes are removed during breast surgery (with sentinel node biopsy or axillary dissection) or are treated with radiation therapy, some of the lymph vessels can become blocked. This may prevent lymph fluid from leaving the area. It can appear in any area of the upper body on the same side as the breast cancer. These include: hand, arm, underarm, breast, chest wall or on your trunk (front or back).
How to prevent lymphedema-
- Start doing the exercises your physician or Physical therapist prescribes as soon as they tell you can start.
- Try to avoid infections or burns
- If at all possible, have blood drawn, injections, IV’s and vaccinations in your unaffected limb.
- Moisturize your nails and cuticles often. If you have a manicure, do not have them cut your cuticles.
- Keep your arm and nails as clean and dry as possible. If you have an insect bite, cut or hangnail, keep clean, use an antibacterial cream and keep covered.
- Wear gloves when gardening, washing dishes or for general cleaning.
- Use an electric razor to shave your underarms.
- Use a thimble if you sew
- Wear sunscreen on your arm to prevent sunburn
- Wear oven mitts
- Avoid extreme temperature changes from hot to cold when bathing or washing dishes.
- Avoid tight clothes or tight jewelry
- Don’t carry heavy objects with your affected arm. Check with your surgeon or Physical Therapists for weight limits
- Have your blood pressure taken in unaffected arm
- Wear a compression sleeve when flying. You will need to be measured and fitted for a sleeve.
Signs of lymphedema include swelling in the arm or hand (for example, you may notice a tighter fit of rings or watches), feeling of tightness, heaviness or fullness in the arm or hand, feeling of tightness in the skin or a thickening of the skin or pain or redness in the arm and hand. It is important to seek evaluation and treatment as soon as possible if your do experience swelling. Contact your physician immediately if you have signs of infection in your affected arm (i.e. redness, warmth, elevated temperature).
For further information and referrals, see your surgeon or oncologist or contact firstname.lastname@example.org at the Cancer Resource Center.
“I started chemotherapy a few weeks ago. With each passing week, I’m feeling more stressed, fatigued, and I’m wondering if I’ll be able to continue my exercise routine during treatment if I continue to feel this way or even worse as time goes on. Any suggestions?”
Here is a link to an excellent booklet on Cancer and Stress Reduction prepared by students from the Department of Physical Therapy at Ithaca College to help get you started.
“I am beginning chemotherapy treatment soon and I keep hearing all about chemobrain. Can you tell me about it and what I can expect?”
Thanks for writing. Chemobrain is one of the possible side effects of chemotherapy. Here is a link to a brochure developed by Ithaca College Occupational Therapy students that describes what it is, signs and symptoms, and helpful strategies for dealing with it.
“My doctor said that my case is going to be discussed at the “Tumor Board.” Can you explain what that is?”
Tumor boards (sometimes called multidisciplinary conferences) regularly meet in hospitals that treat cancer patients. They provide an opportunity for doctors to discuss individual patients and to collaboratively decide on the best courses of treatment. Physicians who regularly attend are medical oncologists, radiation oncologists, surgeons, pathologists, radiologists, and other specialists. Social workers, dietitians, and other professionals involved in the care of a particular patient will also contribute their expertise.
These discussions are particularly important when multiple specialists are involved in a patient’s care and/or when the diagnosis and treatment aren’t obvious. For example, one patient might have two separate cancers. Which one do you treat first?
Smaller hospitals tend to have a single tumor board for all types of cancer. Major cancer centers typically have multiple tumor boards that specialize in specific types of cancer, e.g., one tumor board for breast cancer, another tumor board for head and neck cancers. Here’s a brief video that describes how a tumor board functions.
” I’m thinking about donating my hair to be made into wigs for people with cancer. Can you provide some guidance?”
Information on donating hair.
“My friend was recently diagnosed with cancer. She is my first friend with cancer. I want to be helpful and supportive but I’m not sure how. I don’t want to say or do the wrong thing. Any suggestions?”
In addition, a link to some articles by Bob Riter.
“I was recently diagnosed with cancer in the late summer. I am about done with chemo and am scheduled to begin radiation soon. I don’t want to disappoint my family but I’m really not in the mood nor do I have my usual energy for the holidays this year. Any advice?”
- One of the most important things to remember is that it’s okay to do what’s best for you. It’s perfectly reasonable to want to limit your activities, say no, and choose only those events that you truly want to do and have energy for. Adjust your expectations – it’s okay!
- Be aware of your feelings, whether they be sadness, fear, pain, joy, or gratitude. Give yourself permission to feel them and express them fully.
- Take care of yourself. It’s okay to indulge a bit but remember to eat 3 healthy, balanced meals a day, and limit sugar, alcohol, and caffeine. Try to make time for some light exercise. The benefits are numerous including stress reduction and improved energy. Don’t forget to get plenty of rest. Cat naps sometimes do the trick.
- Do things that will lift your mood – a hot bath, a massage, a good book, petting your cat or dog.
- Communicate with your family. Be honest about how you are feeling and seek their help with holiday prep.
- Create new holiday traditions. Sometimes the simplest of activities can be the most fun and meaningful. Read a holiday poem with your loved ones, have a holiday potluck, or sing some carols at home.
“My doctor has just recommended that I participate in a clinical trial. I am not sure if it’s right for me. What should I consider when making my decision?”
Clinical trials are important, necessary, and worthwhile. Medical science advances because of these trials, and participating is altruistic because others with your disease will benefit. The benefit to you as an individual, however, depends on your specific situation.
Our advice for people considering a clinical trial is to talk with their oncologists as to the potential pros and cons of participating.
Some considerations: What type of trial is it? Some trials are testing to see if a new treatment is safe to give to humans. Other trials determine if the treatment is effective against your disease, or compare its effectiveness against existing treatments. It is important to remember that the “new” treatment does not always prove to be better than the standard treatment.
How convenient will it be for you to participate in the trial? Some trials require that you travel to major hospitals, even for seemingly routine tests.
How effective is the standard treatment for your type of cancer? If the standard treatments aren’t very effective, it may make more sense to participate in a trial.
Participating in a trial can have the benefit of connecting you with clinicians and researchers who are experts in their particular type of cancer.
Making a decision to participate in a clinical trial is very personal and there is no right or wrong answer. Talk with your doctors, and know that those of us at the Cancer Resource Center are here to help you think through the questions to ask and the factors to consider.
“I was just diagnosed with cancer and will be seeing an oncologist soon. As you can imagine, my head is spinning and so many questions are popping into my head. Where do I find information and what are the best questions to ask on my first and during follow-up visits?”
It can be overwhelming to receive a cancer diagnosis. Today, people often turn to the Internet for information, but much of what they read is incorrect and/or overwhelming. Here are a few reliable sites worth exploring:
When you visit the oncologist, it’s helpful to have someone come with you to take notes. There’s a great deal of information that get’s discussed and it’s helpful to have a second ear and extra support.
Many people who are first diagnosed find it helpful to visit the Cancer Resource Center to discuss their situation and prepare for their appointments. We can help you prepare and prioritize your questions. We have no agenda other than being helpful to you.
“I was recently diagnosed with cancer and am very uncertain about what to do. I have seen an oncologist and they are recommending surgery and chemotherapy to start. Everyone keeps telling me to get going, start treatment, get rid of that cancer. I don’t know if that’s what I should do or if should I get a second opinion Everything is happening so fast. Help!”
All the different thoughts and emotions you are experiencing are quite normal and understandable. Many people have shared that they feel like their life has changed forever in a matter of minutes and it feels like they are trying to catch a speeding train. It is important and a matter of self-care to take time to breathe, think, and re-group.
After getting the information you need from your medical team, the opinion that is most important is yours. Many friends and family members will want to help and support you which is a good thing. Many also will offer their opinions even if you don’t ask, however, it’s your body, and your treatment….and your decision.
One important question to ask your oncologist is about timing. How much time do I have before I need to begin treatment? What are the risks of delaying treatment?
It can be extremely helpful to have a second opinion if time permits. Often the second opinion confirms the recommendations of the first doctor. If it doesn’t, then you have two perspectives and treatment options to consider and additional resources to help you. Most doctors support second opinions and will help you get one. If yours doesn’t, ask them why. If you don’t like the answer, that will tell you something.
The Cancer Resource Center staff and volunteers are here for you and can meet with you to talk about your questions and concerns. We listen first and offer information and resources to assist you during each phase of your cancer experience
“I finished my cancer treatment almost 2 years ago. I am trying to stay positive, rebuild my health, eat right, etc. Despite doing all this, I continue to have this underlying fear that my cancer will come back. This is especially true right before I have a check-up with my oncologist or any sort of test. I think about it all the time and it keeps me from enjoying life and focusing on the positive things in life. It’s also affecting my relationships.”
This is a very common concern – so common that there’s a name for it – scanxiety. With time, the anxiety generally lessens, but nearly everyone experiences it to some degree.
This issue often comes up in our support groups. The conversation often focuses on what we can control and what we can’t. The things that you are doing to reduce your risk of a recurrence – focusing on positive life activities – are terrific because those are the things you can control. Group members often share that they come to realize that constant worrying won’t stop the cancer from coming back.
This realization often helps them relax and better channel their energies. Other things that can help: Joining an in-person or on-line support group where you can talk to others with similar experiences. This may reduce the amount of time you need to discuss this with your loved ones and ease the stress on your relationships. Learning mindfulness meditation and practicing it when you begin to have these reoccurring thoughts. Consider individual counseling with a therapist to learn other techniques for managing your distress. Here are a few articles that may be helpful:
“I am taking care of my wife who is recovering from cancer surgery. I have friends and family constantly calling me and asking for updates, telling me what I should be doing, and telling me to be in touch if I need anything. I am overwhelmed and though I could use some help, I don’t even know where to begin.”
This experience is a very common among caregivers. It’s not surprising that you are feeling overwhelmed trying to balance taking care of your wife, responding to family and friends and addressing other life demands.
Is there a member of your family or a friend who can help you coordinate communication with everyone else? You and your wife would decide what you want to communicate and that person could be in charge of communicating with everyone else by email, phone tree, or whatever works. That one individual would be your main contact for communicating with others.
An excellent method of communicating health updates is through CaringBridge. It allows you to share information with anyone you choose at the same time.
You mention that family and friends have offered to help. You may want to sit down and make a list of some concrete things that might help you. The kinds of things we hear that are most helpful to many caregivers include: having a meal delivered to the house, pulling weeds in the garden, grocery shopping, sitting with a loved one while the caregiver takes a break, walking the dog,etc. This list could then be shared by someone who is willing to coordinate helpful chores and family members and friends can choose concrete tasks from the list. Again this coordination can be accomplished in many different ways including through helpful online web sites:
Thanks for sharing your question. We hope this information is helpful and provides you with some time to take care of yourself, an important, often forgotten “must” for every caregiver. If you are interested in talking about caregiver issues, consider attending one of our caregiver support groups, the second Tuesday of every month at 5:30 pm at the CRC House. You also are welcome to talk with a staff member one on one over the phone or in person. Call 277-0960 or just come visit us.