Facebook Cancer Management - Tips
IN HONOR OF OCTOBER BREAST CANCER AWARENESS MONTH
Cancer is a tough turn in the road of life that many people will face for themselves or a loved one. This month we will provide tips for each step of the cancer process--diagnosis and decision making, treatment and post treatment recovery. Whether you are the patient, the friend or a family member, help is available to make your journey easier.
Comments are welcome and personal problems may be sent privately to my email address: DrSandraHaber@gmail.com.
CANCER DIAGNOSIS AND DECISION MAKING
Tip 1. The sobering facts are that 1 out of 2 men and 1 out of 3 women will be diagnosed with an invasive cancer in their lifetime (American Cancer society, Cancer Fact and Figures, 2014). The diagnosis of cancer is often traumatic and brings up fear of death and anxiety over treatments.
Tip 2. There is often a “cancer mindset”. This refers to the beliefs and feelings about cancer that are based on a person’s actual experiences or conventional wisdom. Parents or grandparents may have suffered and died of cancer before the use of palliative treatments and anti-emetics (medications used to keep patients comfortable). In the past, cancer was often a death sentence. This is no longer true but the mindset unfortunately continues to contribute to the anxiety that surrounds a cancer diagnosis.
Tip 3. If you or a loved one is diagnosed with cancer, it is helpful to schedule a second opinion so that you have at least two different ideas about what medical procedures are indicated. It is wise for two people to go to each visit--the patient and his/her partner or friend. The reason for this is that a cancer diagnosis triggers a great deal of anxiety and it is hard for a patient by themselves to absorb complex information. The partner or friend should take notes during the meeting with the oncologist and they should also find out who to call for clarification of questions that might arise following the meeting.
Tip 4. Some patients feel guilty about getting cancer and some loved ones and friends blame the patient for getting cancer. Were their too many fatty foods? Was there too much alcohol consumed? Was it about a sedentary lifestyle? Although there is some correlation between cancer and lifestyle, these correlations are by no means conclusive. Plenty of people with the same behaviors do not get cancer. Very often, it is the confluence of genetics and environment that cause cancer. The scientific information is far from complete. Self blame and blame from others is often inaccurate and always unhelpful.
If the person with cancer was a smoker, guilt and blame can be especially severe. Indeed, we do know that smoking is an unhealthy behavior and contributes to some kinds of cancer. On the other hand, smoking is an addictive behavior that is difficult to overcome. Regardless of the history, it is more helpful to deal with the current cancer situation that to revisit what cannot be changed.
Tip 5. Some patients are quite comfortable following the advice of a trusted doctor. Other patients want to read the latest research and are comforted by information. Unless a recommended treatment seems unethical or harmful, it is often helpful to support the patient’s decision-making style whether they prefer high or low on information.
Tip 6. Sometimes patients are unwilling to face a cancer diagnosis or make a medical decision. In this case, a partner or friend may need to help the patient arrive at an appropriate decision based on medical consultations.
Tip 7. Often there are treatment options that have roughly equivalent outcomes. The patient needs to weigh the importance of each treatment, along with the lifestyle repercussions and the implications for mortality or recurrence.
For example, doctors may leave the decision about whether to have a lumpectomy with radiation or a mastectomy to the patient. Similarly, the decision to have radiation or surgery for prostate cancer is often left up to the patient. The patient may have a different choice than either the caregiver or friend, but, given that the choice has equivalent outcomes, the patient needs to be supported in their decision.
Tip 8. If surgery is a choice for cancer treatment, find out what type of preop testing is needed, whether the surgery needs to be immediate or can wait (and if so, how long), where the surgery will be done, how long the patient is likely to be in the hospital, what types of pain medication will be available to use at home, how long will the recovery time likely be, what physical limitations will there be and for how long.
Tip 9. When considering surgery, find out if the patient will need help with daily activities such as showering or getting dressed. What about driving and returning to work? What type of follow-up medical visits are involved in the post surgery process? Will a visiting nurse be required to change drains or bandages? Can this be done by a caretaker?
Tip 10. If lymphedema is likely, ask what types of exercises can be done both before and after surgery to reduce the seriousness of this problem. How likely will it be that there is a problem? How much will lymphedema interfere with daily life? Ask to speak with a lymphedema expert who is on the hospital staff.
Tip 11. If radiation is a choice for cancer treatment, find out the usual schedule for radiation. Typically, radiation is every day for several weeks. Ask about usual side effects such as skin irritation or fatigue. Will there by a long term impact on the patient? Will there be permanent skin changes?
Tip 12. If chemotherapy is a choice for cancer treatment, ask about the usual schedule. How often does the patient get chemo and for how long? Are there many side effects? Remember that not all chemotherapy is created equal. Chemo “light” may have few side effects while chemo “heavy” might have nausea, fatigue, hair loss or nerve pain. What medications are given to manage these side effects? When at home, what symptoms warrant a call or visit to the hospital?
Tip 13. Within the chemotherapy cycle, ask if there are expected days when the patient will feel well? Are there expected days when the patient will feel ill? How predictable are these patterns?
Tip 14. Whether you are the patient or a caregiver, it may be helpful to speak with former patients about their experiences both during treatment and post treatment. What would they have done differently if they could do it all over again? Were there any surprises? Could they have planned for some aspect of treatment in a better way?
Tip 15. Most hospitals have cancer support groups for patients, and often for caregivers. Check out these groups. They are often a place to share fears and anxieties, hopes and helpful tips. Cancer support groups can create much needed social networks. If you cannot find a cancer support group, inquire with Cancer Care, a national organization with a long history of helping patients and their caregivers.
HOW YOU CAN HELP--YOU LIVE NEARBY....
Tip 16. In anticipating the treatment process, and recognizing that the patient may not be home for many days or for a good part of many days, it is helpful to compile a list of tasks and then ascertain from family, friends, and community groups who is available to help. A friend or relative who can serve as a “team captain” can be helpful in coordinating the patient and families needs, and the offerings and timetables of volunteers.
Tip 17. Transportation to and from treatments is often a problem for cancer patients. For many patients, public transportation doesn't exist or is not viable. Treatments such as radiation require appointments 5 days a week, often for as long as 9 weeks. If you have access to a car, offering to drive the patient either one way or round trip can be helpful.
Tip 18. Visiting during treatments or during a hospital stay may be helpful. If a patient is hospitalized, the team captain, with the patient’s permission, can organize friends and family to make scheduled brief visits. Individuals can choose specific days and time and coordinate a reasonable schedule. It helps to check with the patient that day to see if they are up for a visit. If you do visit, be sensitive to tiring the patient and bring a book so that the patient can doze off and not feel obligated to engage in conversation. Ask if the patient would like you to stay or would like you to get a cup of coffee and come back.
Bringing photos or some interesting story is helpful when visiting since there is only so much news that a patient in the hospital can discuss. Some patients may like you to read outloud to them.
Tip 19. When children are present in the family, offering to taking children to and from school, have a sleepover, superve homework, or cheer them on in a school play, concert or sporting event can be helpful and minimize a parent’s worry.
Tip 20. If there are pets in the home, an offer of help can do wonders. Suggestions include walking the dog, changing the cat’s litterbox or feeding the bird can be invaluable to the patient and family. For extended hospital stays, pet sitting in a friend’s home may be a more practical solution.
Tip 21. Often overlooked is the fact that patients at home may have prescriptions for medication, but these prescriptions need to be filled. Having a friend or family member take care of this task can be helpful.
Tip 22. Collecting and sorting the mail into piles can be helpful. Categorizes could include “needs immediate attention”, “interesting but not urgent” and “third class mailings”.
Tip 22. Offer to accompany the patient in wig shopping, before hair loss sets in. A wig will typically be paid for the insurance company and, even if a patient is uncertain as to whether or not they will want one, it is far less complicated to buy it while the patient is feeling well and has not yet lost their hair.
Tip 23. If you enjoy cooking, consider making dinner for the patient and caretaker and putting some extra food in portion size containers in their freezer.
Tip 24. Depending on the season, consider offering to mow the lawn or shovel the snow. Other helpful chores are taking out the garbage, sorting the recycling and doing the laundry.
Tip 25. During recovery, offer to stay at home with the patient and give the caregiver some time off.
HOW YOU CAN HELP--YOU LIVE FAR AWAY....
Tip 26. In a phone call to a patient in the hospital, it may be helpful to say “how are you today?” Rather than “how are you?”
Tip 27. If you leave a phone message on the patient’s home line, do not insist on being called back. It is better to say ”I was thinking of you and if and when you would like to it would be fine to call back. But you dont have to. I just want you to know I was thinking of you.”
Tip 28. If you live too far to visit, consider sending a “just thinking of you” cards once a week or once a month with a pleasant personal note or photo enclosed.
Tip 29. If you are a whiz at filling out insurance forms, you might be helpful with some of the administrative tasks. Be sure to get a signed and dated note from the patient that authorizes you to speak with their insurance company in case there are questions about the billing.
Tip 30. If the patient and caregiver would like, offer to put an updated outgoing message on their telephone voice mail, send a friendly e-mail to everyone on their personal list updating them on how the patient is doing, or take charge of a website (like Caring Bridge) that permits you to post updates and information about a cancer patient.
Tip 31. If you are a close friend, offer to make a personal phone call to loved ones who are far away and worried. Aging parents and relatives who are unable to travel may appreciate a personal call from someone who has recently spoken with the patient and can report on how they are doing.
Bonus Tip. Be aware that trying to be helpful if you are ill or if a family member is ill is not really helpful. Cancer patients typically have compromised immune systems and staying away during illness is advisable. During visits, wash your hands frequently and ask if wearing a hospital mask is advisable.
Follow Dr. Haber for a variety of helpful tips on her facebook page (facebook.com/drsandrahaber).