Guidelines for Everyone Dealing with Sarcoma

Guidelines for Sarcoma Patients

Being a patient with cancer is a challenging and daunting task. Here are some guidelines that may help you and your loved ones cope.

1. You are in charge. It is important that the patient be allowed and made to feel that he or she is in charge of his or her care. Often we see patients lost in a morass of treatment by committee, losing identity, and any idea of self. Nobody likes the feeling of drifting helplessly, buffeted by apparently uncontrollable forces related to their disease or their treatment. Much of this is influenced by the approach taken by doctors and other caregivers, but it is also the responsibility of the patient. You are in charge. You can be in charge. It is important that you feel in charge. It is clear that the patient who does feel in charge of his or her own life and illness copes with greater equanimity than the patient who abandons hope, and becomes a bobbing cork on a very rough sea.

Video: Sarcoma Centers

2. There is a doctor who can help. Patients with inadequate care may not have the doctor to lead their care who is the best person, for either their disease or their individuality. If you have this feeling that you or your doctor are not coping with your illness, remember "there is a doctor who can help." This does not mean that someone can provide you a magic wand and all the problems will disappear, but there is someone who understands your illness, understands what is available and can guide you through what needs to be done. Often this is a specialist, who has seen your type of problem many times, but it does not necessarily have to be. Most importantly there is a doctor who can make you believe that you can be helped and that you can confront your fears and anxieties.

3. Family can help. Do not forget your family can help. You must be willing to allow them to help, but you also must be willing to take a stand when their efforts to help are not those that you need. Often, you, the patient will feel that "I wish people would leave me alone." It is perfectly appropriate to let your feelings be known. It is perfectly appropriate to ask for help from your family. Your family is desperately looking to find ways to help you, and the simplest help that you might not have accepted, when you are well, becomes a very gratifying reward when you are not well. I like to tell the patient that this is, for the family, "pay back time." It is time to pay back all the things that the patient has done for members of the family and to be repaid without malice or expected reward, and with compound interest!

4. Cancer is not a punishment. The way in which patients view a cancer diagnosis varies widely. One of the unfortunate harmful ways is to view cancer as a punishment--a punishment for an inappropriate previous lifestyle, a punishment for attitudes or behaviors towards others, or for things not even known. Cancer is not a punishment. Cancer is a disease, and should be seen as such. You cannot go back and live in the past. You cannot change what you did in previous years, but you can go forward. You can change a lot going forward, but it has to be done in a way that utilizes your resources, strengths and weaknesses to get better not to get worse.

5. The doctor can have a bad day, too. Some patients fail to appreciate that there are days when the doctor may have a bad day. The doctor is allowed to have a bad day, but he or she is not allowed to have a bad day every day. Be aware that your doctor, just like you, often has a family--a troubled son or daughter, an ill parent, a mortgage--all of the things that you struggle with. There will be occasional "bad doctor days." Thesee should be rare, because if they happen to you more than once, then they must be happening to others on multiple occasions. So, give the doctor a little slack, but not too much. If he or she is having a bad day everyday, then he or she should not be looking after you, and should be addressing whatever it is that troubles him or her.

6. Waiting is inevitable. In this day and age waiting is inevitable. Sometimes the better the doctor, the longer the wait. What can one possibly say to alleviate that except--be prepared. The wise patient will come with a book or music or something to alleviate the time spent waiting. It is disrespectful of the doctor to keep you waiting, but in the majority of cases that is not deliberate. It may well be that the doctor does have too many patients, and does keep you waiting, but the only solution for the doctor is not to see you at all. A thoughtful doctor will apologize for keeping you waiting, but he or she will also be the person who, when he expects to see you for a brief follow-up visit, and you have a new problem or a different problem, will take the time to sort that out, thereby making others wait. Many specialist physicians have no idea when the patient first comes, whether it will be a simple evaluation, or a complicated one. The doctor cannot know how well you are prepared, how much you know. Nothing consumes the good doctor’s time more than having to make the time to redefine the appropriate expectations of the patient, who has been sent with little or no forewarning of the seriousness of their illness.

7. Tears are OK. Laughing and crying are both emotions. It is OK to laugh, it is OK to cry. They both serve a purpose in helping one get through any life threatening illness. Tears, like laughter, can be shared. It is normal to feel sorrow and potential loss, sharing helps.

8. There isn’t any treatment—including no treatment—that has no side effects. Some patients believe that all treatment should be risk-free and side effect free, and that is just not so. There is no treatment that does not have some downside risk. Doing nothing has a downside risk in anxiety, frustration, and anger. Doing something is never without personal cost.

Video: Sarcoma Treatment

9. Most patients get better. We tend to forget that most patients, particularly patients with soft tissue sarcoma, do get better. The majority of patients are cured. So try not to dwell in doom and gloom with a cancer diagnosis without understanding there is a very good chance you will get better. More importantly, it is not living with cancer that is the problem, it is dying from it. In the future, much of the treatment may well be control not cure, like any other chronic illness.

10. Miracles can happen. Every physician, every patient knows of somebody who, apparently terminally ill, recovered to the amazement of all who were caring for him or her. Miracles can happen, but they just do not happen every day.

Guidelines for Caregivers of Sarcoma Patients

Being a caregiver for a patient with cancer, whether family or friend, is a challenging and daunting task, but there are ways in which you can help.

1. Cancer patients need to be aided and assisted, not avoided. Do not be afraid to visit; do not be afraid to offer your help.

Video: Advice to Caregivers

2. Cancer is not a contagious disease. Touching usually helps. It is important, particularly in those patients who are close friends or family members to recognize that hugging can help. Physical contact is often desired, but do not be put off if the loved one initially rejects your attempts at physical intimacy or physical contact. It takes time to adjust to the thought of a cancer diagnosis. It takes time to adjust to the realization that your body has somehow "let you down." All of this will come about and the need and desire for physical contact becomes real.

3. Optimism is infectious. It can be transferred. It can be transmitted. False optimism, however, can be unkind. The patient often cannot believe that they will get through even the simplest part of the treatment plan. Realistic optimism can help this immeasurably.

4. Silence does not mean rejection. Often, your presence can be more valuable than your words.If the patient does not wish to talk, do not try to force the issue. Conversely, if you fear the silence, and suspect withdrawal, ask. The simplest approach is often the best—"do you wish talk, do you wish me to stay, would you like me to leave?" Establish a firm understanding that you will do what the patient wants and be pleased to do so.

5. Laughter and tears are both emotions. There is a place for both—share them. Even in the darkest hour, laughter can be kindled.

6. If you really think that you have an idea that will help – ask. If the suggestion is accepted, do it, if it is not, then drop it and return to it another day if you think it is really important. The patient with cancer is often overwhelmed and has difficulty making the simplest of decisions. Forcing the issue will rarely help. Accepting that some decisions cannot be made now, is just empathetic understanding.

7. Often the easiest way you can help is by helping those who the patient loves. Caring for a child, a spouse or a pet can often alleviate stress far more than direct assistance to the patient. Most patients fear not just for themselves, but they fear what their illness will do to those they love.

8. Insurance companies are not always right. Often a willingness to make a call to address an issue of an insurance carrier for a patient relieves an intolerable burden that adds to their difficulty. Tenacity in this situation will often win out. Nothing cheers the insurance carrier more than you giving up!

9. Be very sure that you understand the relationship that the patient and the doctor have before jumping into the midst of it. On occasions, you can make that relationship better by asking questions, or by listening. On other occasions, it can be destructive. Assess ahead of time with the patient what they need you to ask of the doctor and what they need you to listen for or take notes on.

10. The future is not off-limits—it can be discussed. Plans can be made; provisions to be met can be discussed, but only in the context of not removing hope, because the future is where hope lies.

Guidelines for Parents of a Child with Sarcoma

Video: For Parents of Sarcoma Patients

1. Your child has cancer. There is no fear greater than the fear we feel if our children's lives are threatened. You must recognize your fear and how it compromises your ability to ask the right questions, hear the answers, and make decisions. Acknowledge your fear, express it. You may think that by concealing your concern you are protecting your child. Children have radar. They can sense your feelings. You aren't hiding anything.

2. It's okay to use the word cancer. You are going to take your child to see a cancer specialist. They will see children with no hair, maybe missing a limb. Other children will talk to your child. They will hear the word. It is much better that they hear the word from you. You will be able to reassure them that they have something serious, but you will get them the treatment that will make them well.

3. It is not your fault. Your child didn't get cancer because of something you did or something you failed to do. That's not a guess. Epidemiologists are specialists in tracking the causes of diseases. They have studied thousands of families who have a child with cancer. There is no link to where you live, what you eat, what vaccines you did or didn't give your child, or your family history. Our best understanding of childhood cancer is that it happens randomly, just by bad luck. 

4. You are going to need help. Lots of help. Getting your child through treatment for sarcoma is a full time job. You may already have a full time job. You may have other children. They still need to get up, eat breakfast, go to school, see friends, play soccer, do homework, go to pediatrician checkups. You cannot do this alone. Reach out to extended family, friends, any network you have. Accept help. You need to preserve your own strength for your child. 

5. Find out about groups that can help you with expenses. There will be a lot of expenses that are not covered by insurance. Travel expenses and parking at the hospital. Co-payments for drugs. Child care for the other children. Stays at a Ronald Macdonald House. Ask to work with a social worker or patient representative to explore groups and agencies that can help.

6. Be prepared to be a partner in your child's care. No one knows your child as well as you do. You are the advocate for your child but in partnership with the doctors, nurses, and all the other staff. So many different people will be involved in the care of your child that it is inevitable that you will find some inconsistencies. Don't play "gotcha!" If you hear something that sounds wrong, ask questions, and relate your understanding. You have not only the right but the responsibility to be sure that everything goes right for you child. Just be sure that you remain a partner with your clinicians.   

7. Lots of people are going to give you advice.  Some of it will be good and some of it will be bad.  Thank them all for their concern and discuss it with your doctors and nurses.  

8. You must be able to trust your doctors and nurses. They are going to ask you to let them perform surgery on your child, give your child chemotherapy, administer radiation treatments to your child. You must have complete confidence in the people caring for your child. If you don't feel comfortable, if it doesn't feel right, you must find a way to fix it. Sometimes that may mean changing doctors. That's OK. Sometimes the chemistry between families and doctors is just wrong. Good doctors will recognize that it is critically important for you to trust your medical team and will understand if you choose to shift your care. This is about your child, not about the doctor.

9. Ask lots of questions. Good doctors and nurses will welcome your questions. Just remember that there are good times and not so good times to ask lots of questions. Sometimes everyone is very busy and focused on getting things done. If you know that you have a lot of questions and think it will take more time, ask for a meeting at a time when your doctors and nurses are not distracted by the demands of patient care and have time to share with you.

10. Consider talking to other parents in the same situation. Some parents are very private and don't want to discuss their fears and concerns with others. But the only people who can really understand what you are going through are other parents with a child with cancer. They may have learned lessons that they can share with you that will help you. There are formal support groups and informal chances to talk when you meet them at the hospital or at a Ronald MacDonald House. You may find it very helpful to share your concerns with someone else who is wrestling with the same problems as you.

Helping a Friend Deal with Sarcoma

"We Didn't
Have to Ask."

"When my husband was going through treatment, it was so hard when people would say, "If you need anything, just ask." It is hard to ask. When people would just show up with a grocery gift card, or we would come home and the grass was somehow MOWED without us asking...those things meant a lot!" - Michelle

It is difficult to watch a friend struggle. The good news is: there are things that you can do to help. In fact, your help is needed, whether you are a close friend or a neighbor. Many sarcoma patients have difficulty taking care of their basic needs and handling the financial and emotional strain of this life-changing diagnosis. Your support can make such a difference in your friend's daily life, and can affect his or her level of hope and happiness.

Just Do Something!

Most sarcoma patients agree on one point: Try not to ask, "What can I do?" Patients and their families often have a hard time answering this question. They may not be able to think of something on the spot, and if they mention a specific need, they may feel as if they are imposing or asking too much.

Instead of asking what is needed, a friend might think about the situation and offer to do something specific to help. A friend might also offer to help the patient come up with a shareable list of ways that others can help. Consider the following list of ideas developed by a group of sarcoma patients and survivors:

"He Wanted to Know."

"After all of my surgeries I now have to wear a permanent eye patch. The week that I had my last surgery, my friend Peter took it upon himself to wear an eye patch for an entire week to see what life would be like for me. He wanted to step into my shoes and see what I was experiencing. Knowing that he did that for me is beyond description or words. To know that a friend wants to know first hand what you are going through is deeply humbling.
- Trista

1. Give gift cards for restaurants, gasoline, necessities, groceries, or a family outing.

2. Offer to bring a meal on a specific night. If there are children in the household, choose something that most kids like, or bring a child-friendly dish and an adult dish.

3. Pick up some groceries and drop them by the house.

4. Call and offer a few free hours to do some household chores. This assistance is greatly appreciated, but patients usually do not feel comfortable asking.

5. Offer to keep the children on a specific night so the patient can rest or go out.

6. Offer to take the patient to treatment on a specific day or week.

7. Take pictures when visiting. Be insistent! The photos will be valuable after the crisis has passed.

8. When appropriate, bring some laughter into the situation. If you find your friend in a silly mood, join in the fun. Or drop by with a funny video or audiobook. Laughter and silliness can provide a sense of balance for someone who spends a lot of time in the serious "cancer world."

9. If you are good with finances or insurance issues, offer to help the patient organize medical bills, deal with the insurance company and arrange payments.

"She Was There."

"What stands out most is the day of my 16-hour surgery. My first visitor was my college friend Deb...I'm not even sure how she got into the ICU, but she did. I'm sure I looked horrible (full of fluid, vented, iv lines everywhere, and tied to the bed), but she was there to support not just me, but my family too." - Nora

10. If there are many community members willing to help, offer to become a "volunteer coordinator" by keeping a schedule of visits, meals, and childcare. Social networking groups and online scheduling tools can be facilitate this process.

11. Volunteer to put together a fund-raiser for the family. If you have no expertise in this area, ask other friends for ideas. Once you have a general plan, propose it to the patient for approval. This is a great way for the community to come together and do something that a family would not do for themselves, even if they desperately need it.

12. Hold an event like a local Team Sarcoma in the patient's honor. We recommend a sarcoma-specific event because sarcomas are rare, and there is a great need for increased awareness and research funds.

Guidelines for Physicians

Although one might think it presumptuous, Dr. Brennan has previously written similar guidelines for doctors, particularly in the context of the younger physician just beginning to take care of the patient with cancer. The following are those guidelines:

1. Be consistent – tell the truth! Nothing destroys a patient’s belief in his doctor more than learning that the doctor has not been truthful.

2. Telling the truth does not mean taking away hope. No physician can or should pretend to play God. There is always hope – it is where the future is. Every physician remembers the patient who he or she did not expect to do well, who was back a year later reminding the doctor of his pessimistic outlook. So when you do tell the truth, it should never be in the context of absolute certainty.

3. Do not promise what you cannot deliver. For surgeons, this means do not promise a curative operation if it can not be delivered. Nothing destroys the faith of a patient in the doctor more than the doctor failing to fulfill promises. It is even worse if you promise something on behalf of another doctor and that doctor is unable to deliver. No matter how much you want predictions to be true, if they are unrealistic, do not promise them.

4. There are no foolish questions, only intolerant answers. For the patient every question is important. On occasions you, the physician, will feel that the question is inappropriate or irrelevant, but for the patient that is not the issue. You can only destroy the faith of the patient by intolerant answers.

5. You can have a bad day, but not every day! Patients understand when you have an occasional bad day. We all have sick family members, a wayward adolescent, or we may not feel well, but it is not a choice for that to be everyday. If you are having a bad day every day, then you need to take time away from the patients and solve your own issues before moving on.

6. Your staff reflects your personality. If a patient calls and is greeted inappropriately by a member of your staff, you are held to blame. Test it out sometime, call your own answering service or call to hear what your voicemail message sounds like. Is it how you would like to be greeted if you were a patient or a referring physician?

7. The patient has rights, but so do you – neither should be abused. If a patient does treat you inappropriately, it may well be merely a reflection of their anxiety, stress or angst, but you are not required to accept abuse. Even the most distressed patient can respect you, as they wish to be respected. It is important to recognize that we all have rights and we all deserve to be treated as we would wish to be treated ourselves.

8. Be affable – be available. If you want to develop a rewarding practice then you do need to be available, you do need to be affable. Looking after cancer patients is not a part-time job. It does cut into your own time and the time with your family, but you do have to be available and you do have to expect that inroads will be made on your time. You may not have the command of your life that you would hope, but looking after patients can never be a part-time occupation.

9. When there is no more treatment you do not say, "Go away;" you say, "An operation may not be indicated, but I will continue to care for you." Nothing distresses a patient more than to be abandoned. Whether you intend it or not, the concept that you are no longer available for them implies that there is no more treatment and there is no more willingness to help, and no more hope.

10. Arrogance truly does breed contempt. The patient has the right to be contemptuous if you are patronizing or arrogant, just as you have contempt for others who treat you in such a similar way.