“I’m a cancer survivor and I sometimes hear from friends who are newly diagnosed. How can I help them?”
Here are the two most important guidelines:
Do more listening than talking. The conversation isn’t about you – it’s about the person who was just diagnosed. When someone tells you that they were just been diagnosed with cancer, they’re looking more for understanding than for answers.
It is fine to say, “This is what I did,” but do not say, “This is what you should do.”
People who are newly diagnosed tend to worry about “what if” scenarios. They ask themselves: What if the cancer has spread? What if the treatment doesn’t work? What if my car breaks down and I can’t get to treatment?
These thoughts are not always rational, but they are understandable. Survivors don’t need to make the newly diagnosed feel even more anxious by sharing every bad experience they’ve ever had or heard about.
You don’t need to be irrationally positive, but you shouldn’t be aggressively negative either.
And no matter how serious the diagnosis, it’s important for the person to maintain hope. Not only hope for a cure, but hope for a smooth treatment process.
In sum, survivors can best help the newly diagnosed by listening and supporting. As the Shaker saying goes, “Let your words be few and seasoned with grace.”
Adapted from “Cancer Survivors Can Help the Newly Diagnosed” by Bob Riter
“I’m confused about the need to get a PSA test for prostate cancer. What are the latest recommendations?”
You’re not alone in your confusion. There have been conflicting recommendations regarding the benefits of Prostate Specific Antigen (PSA) testing over the past several years.
In the past, it was recommended that every man over the age of 50 receive annual PSA tests. Today, our understanding is becoming more nuanced. What is clear is that it’s no longer a “one size fits all” decision. Every man should discuss the potential benefits and harms of a PSA test with his physician. The patient’s age, medical history, ethnicity and other factors impact the decision.
“Cancer is a new world for me. What are some of the basic cancer terms I should know?”
Following are some common terms that you are likely to read or hear while being diagnosed. 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.
These websites can also help you during this time:
- Cancer: Abnormal, uncontrolled growth of cells of any organ of the body.
- Benign: Not cancerous.
- Malignant: Another term for cancer.
- Tumor: An abnormal mass of tissue. Tumors may be benign (not cancer), or malignant (cancer).
- Metastasis: The spread of cancer from one part of the body to another.
- Stage: The extent of a cancer in the body. It is based on the size of the tumor and whether it has spread. Stage 1 is early stage and Stage 4 is the most advanced stage. (Some cancers have a Stage 0 which means that it is very localized and self-contained).
- Nodes: If cancer spreads, it often spreads first to the nearest lymph nodes. Doctors routinely examine these nodes to see if they contain cancer cells.
- Grade: How abnormal the cancer cells look under a microscope and how quickly the tumor is likely to grow and spread. High grade tumors tend to be more aggressive than low grade tumors.
- Margins: When a tumor is removed, it is examined to determine if the borders of the tumor are cancer-free. If there are cancer cells on the border, more surgery may be required.
- CT (or Cat) Scan: A series of X-rays that are combined by computer into images of the bones and soft tissues inside your body. CT scan images provide much more information than do plain X-rays.
- MRI: Another imaging device that is especially useful in viewing the brain, spine, the soft tissue of joints, and some other parts of the body. MRIs do not use X-Rays.
- PET Scan: Unlike CT and MRI which look at structures (i.e., the architecture of the body), PET looks for cancerous activity. Cancer cells often “light up” on a PET Scan because they metabolize glucose differently than do normal cells. PET scans are often used to see if the cancer has spread to other parts of the body.
- Chemotherapy: Treatment with drugs that are designed to kill cancer cells
- Port: A medical device inserted under your skin that makes it easier to receive chemotherapy.
- Radiation Therapy: The use of radiation from x-rays and other sources to kill cancer cells and shrink tumors.
- Hormone Therapy: Treatment that blocks, removes or adds hormones to slow or stop the growth of certain cancers (such as prostate and breast cancer).
- Immunotherapy: Treatment that is designed to boost the body’s natural defenses to fight the cancer.
Sources of Information:
- Cancer Resource Center “Caregiver’s Guide” (www.crcfl.net)
- Medline Plus (https://medlineplus.gov/)
- CancerNet (www.cancer.net)
- Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517
- American Institute for Cancer Research (AICR). www.aicr.org/
- The Bean Institute http://beaninstitute.com/beans-cancer/
- National Foundation for Cancer Research https://www.nfcr.org/tag/cancer-fighting-food/?gclid=EAIaIQobChMI58OazZbi2AIVDoxpCh34WAtCEAAYAyAAEgIz-_D_BwE
“I miss watching live sports events because everything has stopped due to the Coronavirus. It got me to thinking about athletes who were diagnosed with cancer during their careers. Can you identify some of them for me?”
Yes! It’s a great question. We did some searching and came up with a list of many athletes who were diagnosed with cancer while still active in their respective sports. Their stories are both compelling and inspirational:
Mario Lemieux (hockey, Hodgkin’s lymphoma)
Mark Herzlich (football, Ewing Sarcoma)
Scott Hamilton (ice skating, testicular)
Dave Dravecky (baseball, bone)
Edna Campbell (basketball, breast)
Eric Davis (baseball, colon cancer)
Andres Galarraga (baseball, lymphoma)
John Lester (hockey, lymphoma)
Jessica Breland (basketball, Hodgkin’s lymphoma)
Phil Kessel (hockey, testicular)
Britlee Bowman (cyclocross, breast)
Lance Armstrong (cycling, testicular)
Tiana Mangakahia (basketball, breast)
Gabriele Grunewald (track, adenoid cystic carcinoma)
Oskar Lindblom (hockey, Ewing Sarcoma)
Nicole Gibbs (tennis, mucoepidermoid carcinoma)
Eric Shanteau (swimming, testicular)
“I’d love to help support people going through cancer, but I’ve never had it myself? Can I still volunteer? What’s involved?”
Absolutely! Many of our volunteers are people who have not had cancer themselves, but are committed to helping in a variety of way.
The biggest need right now is for folks who can give 3-4 hours per week, either at our downtown office or with cancer patients at Cayuga Medical Center.
For questions or more information, please contact Sharon Kaplan, Director of Volunteers at 607-277-0960 or firstname.lastname@example.org.
NOTE: Volunteer activity at CMC and CRC has been temporarily suspended due to COVID-19. You can still submit an application and Sharon will follow up with you.
“Colon cancer and rectal cancer are often grouped together as “colorectal” cancers. Are they one in the same?”
No. The colon and rectum are attached and, together, they form most of the large intestine (or large bowel as it’s known in the United Kingdom). The rectum is the final 4-6 inches of the intestinal tract. But colon cancer and rectal cancer are thought of as distinct diseases with differing characteristics and different treatments.
Surgery for rectal cancer is technically more difficult than surgery for colon cancer and patients are often referred to specialists in colorectal surgery in larger medical centers, while colon cancer surgery is routinely performed by general surgeons in community hospitals.
It is common for individuals with either type of cancer to experience changes in their digestion and to have similar psychosocial concerns. Simply knowing which foods others have found easy to digest is incredibly helpful. That’s why they often meet together in support groups, including one at the Cancer Resource Center that meets the first Tuesday of each month from 5:30 – 7:00.
“I know that exercise is good for me, but does it have a role in reducing my risk of cancer?”
Yes. There is substantial evidence that physical activity reduces the risk of developing colorectal, breast, uterine, and lung cancers. The National Cancer Institute has an excellent fact sheet that summarizes what’s known about the topic.
A variety of mechanisms might be at work – exercises reduces weight, helps regulate hormones, reduces inflammation, and speeds digestion.
Exercise can also reduce the risk of recurrence for people already diagnosed with cancer.
The American Institute for Cancer Research provides excellent resources on reducing your risk of cancer through exercise.
Even gentle exercise reduces fatigue which is a nearly universal side effect of cancer and its treatment.
The Cancer Resource Center offers several wellness classes specifically targeted to those affected by cancer. Come join us!
“What do I need to know about cervical cancer?”
What is cervical cancer and who is at risk?
Cervical cancer is a type of cancer that occurs in the cells of the cervix — the lower part of the uterus that connects to the vagina.
Most women diagnosed with precancerous changes in the cervix are in their 20s and 30s, but the average age of women when they are diagnosed with cervical cancer is the mid 50s. This difference in the age at which precancerous changes are most frequently diagnosed and the age at which cancer is diagnosed highlights the slow progression of this disease and the reason why it can be prevented if adequate steps are taken.
What are risk factors for developing Cervical Cancer?
Anything that increases a woman’s chances of getting HPV or decreases her ability to get Pap smears is a risk factor for cervical cancer.
HPV is spread by sexual contact and is the cause of almost all cases of cervical cancer, as well as many vaginal and vulvar cancers. HPV may cause the cells in the cervix to change. If abnormal cells are not found and treated, they may become cancer.As many as 80% of men and women who have had sex have HPV. Usually the body’s immune system eliminates the virus, and most people never know they have it. While most women with HPV will not get cervical cancer, they should be aware of the risk and have regular Pap tests.
Smoking and a weakened immune system (caused by a condition such as HIV/AIDS) can also greatly increase the risk of developing cervical cancer.
What are the signs and symptoms of Cervical Cancer?
- Vaginal discharge tinged with blood
- Vaginal bleeding after sexual intercourse
- Abnormal vaginal bleeding: after menopause, between menstrual periods or excessively heavy periods
- Urinating more often/difficulty urination, blood in the urine
- Pain during sex
- Swollen leg/dull backache
- Fatigue, weight loss, decreased appetite and a general feeling of illness
- Nausea/vomiting with a swollen abdomen
Please see your physician if you have any of the above symptoms.
For more information, please visit the websites listed below
“I was just diagnosed and am nervous about how to deal with the upcoming holidays and my family?”
Holiday time may seem like just about the worst time to have cancer in your family. Even the jolliest of traditions lose their luster when you are worried about your health care needs or those of someone you love. If you or someone close to you has cancer or another serious illness, use these tips and resources to help lift your holiday spirits.
- Prepare for the holidays by deciding what if any traditions you want to continue. Plan in advance how you want to spend your holiday, with whom and for how long
- Reframe your expectations- you may need to modify your traditions or make new traditions.
- Enlist support for organizing holiday gatherings, meal preparation and clean up.
- Take care of yourself: Eat balanced meals, and make time for exercise. Physical activity is a good way to release tension. Limit sugar, caffeine and alcohol
- You may need to limit your involvement. You don’t have to accept every invitation. It is okay to say no.
- Allow yourself simple pleasures- hot baths, naps, favorite foods, movies- anything that can help lift your mood.
- Find distractions like going to dinner, a movie, play; playing cards or games with friends; or other activities you enjoy.
- Accept kindness from others
- If you are struggling financially and/or have a lack of energy, scale back on gifts. If you want to still give gifts, consider gift cards and online shopping.
- Talk to your health care team about upcoming special events.
- Do Stay Connected during the holidays- this can be done by phone calls, email, texting, recording special occasions and video calling ( SKYPE or FaceTime)
- Don’t pressure yourself with unrealistic expectations or try to do it all by yourself
- Don’t overindulge in alcohol. Because alcohol is a depressant, it can “bring out” or heighten bad feelings
- Don’t force yourself to be happy just because it is a holiday season
- Don’t shop ‘til you drop
- Don’t try to do too much in one day. Plan ahead, setting aside specific days for specific tasks.
- Don’t abandon healthy habits. Get plenty of sleep.
“What is a Chemotherapy Port?”
A port is a useful device for many patients and providers. Most patients undergoing chemotherapy or blood disorder therapies can opt for the port. In general, a port catheter is inserted centrally into a main vein in upper chest, as an alternative for an IV catheter.
A chemotherapy port is a small, metal or plastic disc that is placed under the skin to enable easy access to the bloodstream. It is usually inserted below the collarbone or above the breast and allows intravenous feeding of medication to veins and the heart, transfusions of red blood cells or platelets, and withdrawal of blood. Since frequent access to veins is required for treatments, a port can prevent excessive poking of arms with needles and protect small veins. Once therapy has been completed, it is taken out with a small scar left behind.
A port is not mandatory but recommended if healthcare providers have difficulty accessing the veins. There are some chemotherapy medications that can only be delivered using a port.
How is the port inserted? Port insertion itself is a relatively quick procedure but patients will still need to be at the hospital for a few hours since local anesthesia is used for the procedure. To reduce the risk of infection, most providers insert the port a week prior to chemotherapy. The port is usually inserted in the chest but it can also be inserted into the upper arm. Once a port is in place, an X-ray is taken to make sure the port is positioned correctly. A slight bump on the skin and some mild pain will be present after the procedure.
You will be issued a card containing information about the inserted port, which you should carry with you at all times. If you have a power-injectable port, you will be notified by the nurse. During blood draws or chemotherapy infusions, a needle will be inserted into the port to deliver the medication. The port implant should not set off metal detectors. The port is covered completely under the skin and should not be a concern of infection when bathing or swimming.
You may resume taking shower or bathing after removing the dressing. As time goes, the stitches will dissolve. The port may be uncomfortable when not in use for treatment. Wearing a seat belt or a purse over the port may cause irritation. To reduce discomfort and irritation, small pillows may be place between the port and seat belt. The Cancer Resource Center provides “port pillows” in addition to wigs, turbans, hats, and scarves at no cost to you to help ease your discomfort.
The port needs to be kept cleaned. During your chemo session, after your IV is connected, the nurse will flush out the port lines before administering the chemo drugs. It is not necessary to make an appointment for the port to be cleaned unless the port has not been accessed in about a month. Ask your doctor if your port needs any special care, such as flushing with a medication to help prevent clots, infection, and other complications. This can be done at your local hospital and will only take a few minutes.
Source: Medically reviewed by Deborah Weatherspoon, PhD, RN, CRNA on August 9, 2019 — Written by Rethink Breast Cancer. https://www.healthline.com/health/breast-cancer/rethink-bc-ports#1
Source: www.mskcc.org/pe to search our virtual library. About Your Implanted Port – Last updated 8/15/18 ©2019 Memorial Sloan Kettering Cancer Center About Your Implanted Port 7/7 https://www.mskcc.org/cancer-care/patient-education/your-implanted-port
“Many of my friends and family have suggested I keep a journal but I have no idea what to write.”
Writing a journal or doing an online blog is an easy way to document your journey and a way to express your feelings. Research has shown that writing about stressful events can be very healing. Here are some suggestions about how to start writing in your journal. 1. You can brainstorm all your thoughts. This can be beneficial especially when you are newly diagnosed and have a lot of decisions to be made. You may find that there are many things you can’t control but there are some that you can! 2. It can help you get your affairs in order. It is a fact that at some point we will all pass away eventually . Insurance policies, wills, trusts, and written expectations for your family are important gifts to leave to your loved ones. 3. It may help you get organized by identifying what needs to be done. Having a calendar ( either paper or electronic) is a must. 4.Take your time when making decisions. Never allow anyone to pressure you into making a decision. Sometimes you have to take a step back and seek wise counsel Always ask, “Is that the best we can do, and what are my other options?” 5.Create a “worry” section in your journal. As things pop up into your mind,write them in the “worry” section of our journal and tell those thoughts that we can talk about them later during my worry time. “Worry time” is time I set aside to worry so that my day is not consumed with worry, which helps me stay focused on positive things. 6. If you find that you are dwelling on the negative all the time and you can find no joy in life, you may want to get a therapist. Depression is a real thing. Often by talking to a therapist about your fears can be beneficial
“This cancer treatment has really shaken my confidence. I feel so self-conscious, strange, which is unusual for me. Is this normal?“
Yes, this is normal for all people who have been diagnosed with cancer. It is not limited to a specific gender or type of cancer.
Memorial Sloan Kettering social worker Rachael Goldberg, leads a support group on body image changes for men and women as part of their survivorship support services. She explains that some people feel they shouldn’t have feelings about their bodies after cancer, they should be happy treatment is over and they are a survivor.
She further explains relationships are about connections with others, but we also have a relationship with ourselves and our bodies. Many of these relationships are complex even before cancer, and not often talked about during or after treatment. It is normal to feel your body has changed because of the treatment, even if you look exactly the same. This is often very hard for others to understand or empathize with (Goldberg).
Changes from cancer can be temporary or sometimes unexpectedly, permanent. They can be visible (i.e. scarring, weight changes, prostheses, ostomies, lymphedema, etc.), semi-visible (i.e. difficulty with speech, eating, or other self-care tasks, inability to drive, live alone, etc.) or invisible (i.e. pain, sexual dysfunction, neuropathy, etc.).
There can be many complex emotions associated with these changes, including anger, sadness, depression, guilt, fear, and the list goes on. Whatever the emotion, it should be recognized and acknowledged. It is important to leave space to grieve the loss associated with the changes, and allow time to adjust to them. People often don’t realize they may need to grieve the loss of the person they were before the cancer. One topic Goldberg focuses on is how you can be grateful for surviving cancer, while at the same time having feelings of anger or sadness about the changes. You don’t have to feel one way or the other, and need to leave room for both.
There are some steps you can take to help heal your relationship with your body after cancer. Allow yourself time to explore your changes. Be honest with yourself about your feelings. Remember, these feelings are not wrong, and do not need to be held inside or covered up. It’s very important to attend to the ways you are talking to yourself about your body. Our language we use in our self-talk has a great impact on us. Getting stuck in feelings of deficit is easy when you focus on what you can no longer do. It’s more beneficial to acknowledge the loss, and focus instead on what you still can do. With practice, you can learn to find the balance and begin to adjust. Mindfulness activities and journaling have also been very helpful to many people in breaking negative thought patterns.
Based on an article by Meredith Begley dated July 31, 2019 on the Memorial Sloan Kettering website. Additional information: Cancer, 2014 Mar 1:120(5); 633-641.
“I just recently got diagnosed with breast cancer and have young children. Is there a way to understand the genetic risk that could be passed onto my children? If so, how can they manage this risk?”
There is the possibility of genetic inheritance with breast cancer. There are certain genes known as BRCA1 and BRCA2, which are responsible for producing tumor suppressing proteins. These proteins help to repair damaged DNA and ensure that one’s genetic material is intact. If a mutation (or alteration) is to occur within these genes, then the proteins do not function properly, which leads to a higher chance of genetic alterations that could lead to cancer. These mutations can become especially dangerous when they are inheritable. Such inherited mutations significantly increase the risk of breast and female ovarian cancer, along with other types of cancer as well.
Each child has a 50% chance of inheriting this mutation from their mother or father. If you wish to see if you possess this inheritable gene mutation, there are genetic testing options available. Talk with your oncologist about the possibility of undergoing a multigene panel test to determine if your family is at risk. If you do receive positive results, your children can manage their risk in various ways:
1. Enhanced Screening: Increased frequency of breast screenings and starting these screenings at a younger age. This can help detect possible signs of breast cancer as soon as possible. It is recommended that those with this mutation start receiving mammograms as early as 25 years old.
2. Risk-reducing Surgery: This type of surgery removes as much of the “at-risk” tissue as possible. For example, a woman might choose to undergo a double mastectomy upon learning of these positive results in an effort to reduce his/her risk of being diagnosed with breast cancer. The same methodology applies for ovarian cancer as well.
3. Chemo-prevention: This method uses medicine to lower the risk of getting cancer. This is the less popular option, but remains an option for those who choose not to or cannot undergo surgery.
Source: National Institute of Health
“My Care-team said I would lose my hair from the Chemotherapy I am taking. Will I lose the rest of the hair on my body?”
Chemotherapy may cause hair loss all over your body — not just on your scalp. Sometimes your eyelash, eyebrow, armpit,chest, pubic and arm/leg hair also falls out. Some chemotherapy drugs are more likely than others to cause hair loss, and different drugs can cause anything from a mere thinning to complete baldness. The reason you may lose your hair on your head first,is that the growth cycles occur faster on the scalp than on the rest of your body.
Hair usually begins falling out 2-4 weeks after treatment but may occur soon or later depending on the type of chemotherapy you are receiving. It can fall out quickly in clumps or gradually. You may notice it on your pillowcase, in the shower drain or larger amounts in your hair brush. Sometimes your scalp is more sensitive. Many people like to wear a light head covering to bed or sleep on a satin pillowcase.
Some unexpected consequences of losing body hair, includes you may have a runny nose, nasal congestion, more nose bleeds or increased sneezing from loss of nasal hair and watery eyes after loss of eyelashes.
Fortunately, most of the time hair loss from chemotherapy is temporary. You can expect to regrow your hair three to six months after your treatment ends, though your hair may temporarily be a different shade or texture. Some people experience that their leg and arm hair as well as armpit and pubic hair may grow back sporadically.
“I don’t know if it’s that important, but I am up many times a night, can’t sleep. I am so tired! Isn’t there anything I can do, other than taking sleeping pills?“
Sleep is VERY important. Our bodies run on a web of natural rhythms, requiring a well functioning sleep-wake cycle. The sleep cycle, comprised of many stages of REM and non-REM sleep, relates to distinct neurological functions. Your Circadian Rhythm is much more than your sleep cycle. It is a life force resultant of time, season and episodes of light and dark. Your natural state of sleep is at night, when it’s dark. This rhythm drives whole species of mammals and plants; sets your biological clock and is the rhythm that allows plants and animals to anticipate seasons (www.insomnia.net/sleep-health/).
Sleep disturbances impact your function the next day, with decreased productivity and impaired performance. When sleep disturbances are chronic, insomnia.net cites possible results can be: progressive depression, anxiety, motor function problems, irritability, aggression and severe mood swings, lack of concentration, lack of coordination-leading to accidents, chronic absenteeism and tardiness at work or school, dependence on sleep aids, and use of legal and illegal stimulants. Insomnia is a symptom, generally preceded by bad sleep habits. These bad habits, resultant behaviors and beliefs, set learned patterns and lead you to chronic insomnia and sleep disorders. According to the National Institutes of Health, over 100 different kinds of sleep disorders have been identified and classified.If your insomnia is chronic, a workup is indicated to rule out an actual sleep disorder. Chronic Insomnia can be a symptom of sleep apnea, and be potentially life threatening.
Treatments and remedies for sleep disorders may involve a combination of approaches. Some of the more common remedies include: sleep hygiene and lifestyle changes, pharmacological interventions, non-pharmacological medications (over the counter sleep aids, devices and equipment, natural remedies, dietary supplements), cognitive behavioral therapy (CBT) and alternative therapies (acupuncture, hypnosis, relaxation, massage). There are multiple prescription and non prescription meds specifically produced as sleep aids. Some antihistamines and antidepressants can be used as sleep aids as well. These medication recommendations would be part of your medical workup.
If your insomnia is more intermittent, or short term, you may see benefits with good sleep hygiene and lifestyle changes.
- Sleep Hygiene – Evaluate your sleep/bedtime behaviors. Go to bed and get up at the same time every day-even weekends. Unwind your mind through reading a good novel or spiritual growth book, starting about a half hour before bedtime. An action packed adventure story will not have the relaxing effect desired. Establish a routine exercise schedule, carried out during first half of the day.
- Bedtime snacks – Foods rich in Magnesium and Vitamin B6 have been linked to promoting sleepiness. Avoid sugary sweets, juice or fruit before bed due to spiking of your blood sugar. Avoid alcohol before bed.
- Make your sleep area inviting – Your bedroom/sleep area should be free of any unappealing sights, sounds, smells, textures or temperatures. The recommended temperature is 60 to 73 degrees Fahrenheit. The room should be tidy and welcoming, with soft lighting.
- Attempt to relax before bedtime. You may find benefit in a warm bath or shower. Foot soaks or full body soaking with or without epsom salts. Warm liquids may help – warm milk, tea (chamomile is particularly beneficial) or cocoa (low sugar). Limit caffeine after noon.
- Deep relaxation – Relaxation techniques and meditation are often helpful prior to bedtime.
- Herbals – Many natural remedies/herbals have been recommended – Melatonin, Valerian, St. John’s Wort to name a few. Always discuss with your health care team before using.
- Essential Oils – Using essential oils via a diffuser, or in a roll on blend can be a good way to help wind down and prepare for sleep.
- Remove all electronics from the bedroom – Even digital alarm clocks can be a contributor. TV’s, computers and phones are the ones with the greatest negative impact. Turn off your devices around bedtime to signal to your brain when it’s time for sleep.
- Dietary choices – Melatonin is key to a natural healthy sleep cycle. Eating combinations of foods that support melatonin or contain tryptophan which contributed to melatonin production.
- Journaling – Therapeutic way to address what may be troubling you, get things off your mind and even bring you to a state of relaxation and gratitude.
- Exercise – Regular exercise is beneficial, and should be done in the early part of the day, preferably morning. It gets your day started on a higher level, and makes relaxing later easier.
- Sunshine – Start your day with natural light, it helps reset your biological clock.
- Meditate – Deep breathing, and focus or meditation on what you are thankful for or positive experiences can bring your whole mind and body into balance.
- Invest in a good mattress and linens, that are comfortable and promote good rest.
Most of these suggestions are ones that can easily be introduced into our lifestyle with some concentrated effort. It is important for your health and well-being. It’s great self-care and you deserve it!
Please see these sites for further information.
“I was recently diagnosed with cancer. My friends and family want me to get a second opinion, but I don’t want to hurt my doctor’s feelings.”
Most doctors are very receptive to their patients getting a second opinion. Reasons why people get a second opinion can include you wanting to know all treatment options, your current doctor is not a specialist in your particular type of cancer, you are not comfortable with your care team or you want to hear another doctor explain your disease. Your physician’s office can help coordinate the transfer of your records to the facility where you want to get a second opinion. They are also able to help you get an appointment with a specialist. It is also possible to get a second opinion on your pathology so they will request copies of your slides as well as the pathology report. It is always a good idea to ask for a hard copy of your records as well as the doctors office sending electronic records. Before going to your second opinion appointment, check with your insurance company to make sure the appointment will be covered. After the appointment, talk to the two doctors about the treatment options and if they can review your treatment plan together. Cancer treatment is a long process and you need to feel comfortable with your care plan and your team. Many times it is possible for the two doctors to work together and you can receive your care at your local hospital. If you need help getting a second opinion, you can work with your doctor’s office, nurse navigators or you can call the Cancer Resource Center at 607-277-0960 for assistance.
“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 email@example.com 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