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Getting started with research can be intimidating, confusing, and stressful. Start the process with information from your doctor or medical team, and try to move forward from there. They have probably handed you a pile of pamphlets and flyers- use them! Try to use information directly from reliable sources- look for citations from medical studies and stick to well-known websites or organizations.

Chondrosarcoma. I didn’t even know what language that was. I had to have the doctor spell it out for me twice and then repeat it so I could say it. Chrondosarcoma. And, as soon as I could say it I wanted to know everything I could about it. From what I’ve discovered mine was not only a normal reaction but a healthy one, and something I recommend for everyone. – Doug Ulman

Peer to peer programs such as online communities and social media may help point you toward resources that can help you but exercise caution and judgement. Your peers and other survivors can be a great source of information and can help arm you with questions for your doctor. Try to keep in mind that everyone, and everyone’s cancer, is different. Your treatment plan may vary from others. Ask your doctor or nurse practitioner why your treatment plan varies from others because there is probably a good reason.

If you find the research stressful or emotionally draining, ask a friend or family member to help you research. Or break the research down into more manageable tasks, such as researching more specific aspects of your treatment plan. You may also want to research in short sittings. This will allow you to take a break and process the information you learned.

Ask your medical team for the best way to get in touch with them between appointments. Many doctors use electronic systems that allow you to communicate in between appointments. All of your questions and concerns are valid. If you prefer to talk in person, write your questions down and bring them to your next appointment.

You’ve just been told that you have cancer. You are hearing some of the most important information of your life, and you’re hearing it from virtual strangers — doctors, nurses, and health care practitioners of all sorts — and you hardly know anything about them. Who are these people? What is their experience with the illness they are diagnosing? How do you know whether to trust them?

It may have taken you some time to get to this point. Adolescents and young adults tend to experience a delay in their cancer diagnosis for a number of reasons. At this part of the process, you may want to get the ball rolling immediately, but it may also be a good time to hear from someone else. Getting a second opinion is a crucial part of the process. It can provide you confidence in the treatment plan suggested, or give you an alternative plan that makes you feel more comfortable. Don’t worry about hurting your doctor’s feelings! A second opinion is completely normal, but keep in mind that time may be of the essence.

When preparing for a second opinion, keep in mind that you will need to send your medical records, test results, and imaging to the new medical team. The administration with your current medical team should be able to assist you, but if you are being seen at a large hospital, this may involve contacting multiple departments and a lot of phone calls. Some medical systems also charge a small fee for these services to cover their administrative costs. Take a deep breath- you can do this!

Another note is that you will most likely be seeing multiple doctors, plus other members of their respective practices. It is not uncommon to have a medical oncologist (or hematologist-oncologist), a radiation oncologist, a surgical oncologist and more on your team. It’s important to feel confident that they will work well together. Most hospital systems have electronic medical records systems that allow doctors to communicate directly with you in a messaging system, schedule/change appointments, and more. For any urgent issues, use the contact information provided to you by your doctor. If it is a weekend or after hours, there will most likely be an on-call doctor that can help you over the phone.

  • What do you hope to accomplish with this treatment plan?
  • Are there other ways to achieve the same goal? Do those options have reduced or fewer side effects?
  • Will my treatment plan present a risk to my fertility?
  • How can I harvest eggs or save sperm before I begin treatment?
  • What side effects might occur?
  • Will the treatment cause pain?
  • Will I need anesthesia for any part of my treatment?
  • How can I expect to feel during and after the treatment?
  • Will I be able to function normally during my treatment?
  • Will my appearance change because of the treatment?
  • How and where will the treatment be administered?
  • Will I need help getting home from treatment?
  • Will my treatment cause scars or burns?
  • If the treatment is surgery, how extensive will it be and how long will the surgery last? What will my recovery period be?
  • How do I pursue physical therapy? What exercises can I do to best prepare me for surgery?
  • When can I exercise again?
  • Will there be long term physical side effects?
  • How costly is this treatment and is it covered by my insurance plan? What will my out-of-pocket expenses be?

You have your diagnosis; you may have received a second opinion. Now you have to make some decisions. For some, the standard of care is straightforward and is provided to you without flexibility. For others, you may have to make decisions regarding surgeries, chemotherapy, radiation therapy, immunotherapy, and more. As a young adult, you should consider your quality of life and your future quality of life. This may include choosing to preserve your fertility prior to your treatment- please see the next section for more detailed information on this process.

You may want to include your loved ones in your decision making, but remember that this decision is yours and will impact you the most.

As you discuss your treatment plan with your medical team it is critical to address the option of fertility preservation. Fertility can be impacted by the type of cancer you are dealing with or by the required life-saving cancer treatment. You may have questions about the fertility preservation process, the costs associated with preservation, and how your present-day decisions may impact your future. Or, you may be a survivor that is now starting to plan a family. No matter the point in your cancer journey, our Navigation team is trained in many different aspects of fertility and works closely with specialists to get you the answers to all your questions.

Questions About Fertility
  • Will my cancer treatment affect my fertility?
  • Are there alternative ways to treat my cancer without compromising my fertility?
  • What are my fertility preservation options?
  • How much time do I have to preserve my fertility before I need to start my cancer treatments?
  • Can you refer me to a reproductive endocrinologist (fertility specialist)?
  • Are there fertility preservation discounts offered to cancer patients?
  • What are the risks and benefits of each fertility preservation option?
  • What is the probability of success of each option?
  • Which option would you recommend for me?
  • If fertility preservation safe for me? Will it increase the risk of my cancer spreading?
  • What are the costs of each fertility preservation option?
  • Is fertility preservation covered by my insurance?
  • Are there resources or organizations that can assist me in paying for fertility preservation?
  • How will I know if I am fertile after treatment? Are there tests I can take?
  • After treatments are over, how long will it take for my periods to begin again? If I am not having periods, should I still use contraceptives?
  • Is pregnancy still safe for me after treatment? If so, how long should I wait after treatment to become pregnant?
View more resources on fertility preservation.

Once you have been given a cancer diagnosis, a treatment plan will be developed by you and your medical team. A number of different treatments may be used to help control, combat, or cure cancer. Sometimes these treatments are used alone and sometimes they are best used in combination with one another. You may hear the words surgery, chemotherapy, radiation, immunotherapy, or hormone therapy. Your treatment plan should be laid out to you clearly by your medical team. Remember that the plan is not linear and you should check in with your medical team regularly.

Treatment can take a toll on your emotions. This is normal, and it is important to seek support. It may take a few different attempts to find the type of support you need. You can seek mentorship from a fellow survivor that has been through a similar treatment plan, find a support group led by a clinical professional, find a social meetup for cancer patients and survivors, and seek one on one therapy with a clinical counselor or therapist. Acknowledge your feelings, whatever they are. It can be very helpful to find a safe place to express them.

From the day I was told that I needed a CT scan, through surgery and diagnosis, and for a long time after, I was on a virtual roller coaster. The enormous range of emotions was overwhelming and forever changing. I moved from shock to disbelief, to anger, pain, denial, optimism, confusion, fear, hopefulness, hopelessness, loneliness or depression in any given moment. It was so unpredictable. Anything could trigger a stirring of tears or a wave of anxiety. – Doug Ulman

It is imperative throughout the treatment process that you immediately inform your medical team of any changes in how you are feeling, mentally and physically. Those changes could indicate a need to adjust your medication or treatment plan, and doctors might be able to add medications or suggest ways to combat any adverse effects you may be having.

  • What do you hope to accomplish with this treatment?
  • What are the chances that the treatment will work?
  • Are there other ways to achieve the same goal? Do these options have reduced side effects?
  • Will my treatment present a risk to my fertility?
  • How can I preserve my fertility before I begin treatment?
  • How can I expect to feel during and after the treatment?
  • Will I be able to function normally during my treatment?
  • Will I be able to work during my treatment?
  • Will my appearance change because of the treatment?
  • What is the expected timeline of each treatment option? What is my treatment schedule?
  • How and where will the treatment be administered?
  • Will I need help getting home from treatment?
  • If the treatment is surgery, how extensive will it be and how long will the surgery last?
  • What will my recovery period be?
  • How costly is the treatment and is the treatment covered by my insurance plan?
  • Are there any risks that I should know about?
  • Are there any experimental treatments or clinical trials I should consider?
  • What type of chemotherapy will I receive and for how long?
  • What are the typical side effects of chemotherapy?
  • How will the chemotherapy be given (IV, orally, or both)?
  • What are the short-term and long-term side effects (will I lose my hair)?
  • What are some ways to prevent or manage the side effects you mentioned?
  • Will I be able to exercise?
  • Can I have sex? How will treatment affect my sex drive?
  • What are the success rates with these forms of treatment?
  • Will I be allowed to eat during my treatment?
  • Do you have a social worker and/or nurse navigator available to assist me with coordinating my care and recommending resources?
  • After treatment, what type of follow-up care will be needed?

Surgery is often used either alone or in conjunction with other treatments to remove malignant tumors. It can include local anesthesia, which numbs region for the surgery and you remain awake, or general anesthesia, where you are placed under deep anesthetics that put you into a kind of “deep sleep”. Side effects depend on the type of surgery you receive and the medications that you are placed on. You may need a caregiver to help you get to or from surgery and to stay with you in the early phases of your recovery. This person may need to lift items, help you with meals, administer medications and more. Recovery takes time, so be gentle on yourself and allow your physical body plenty of time to heal. Do not be afraid to lean on your caregiver. This is a person that loves you and wants to help you.

You may require therapies after your surgery, such as physical therapy or occupational therapy. Physical therapy will help you get your physical body back to moving around the way you would like to, and occupational therapy will help you make any adjustments to your life to get back to your daily tasks. Some doctors recommend physical therapy before your surgery, also known as “pre-hab”, to take measures of your body when it is in top shape, or to make sure you are strong for surgery. This is becoming more popular every day, and worth asking your surgeon about.

Questions for your Surgeon:

  • How can I best prepare for my surgery?
  • Will I have to stay at the hospital? If so, how long?
  • What can I bring from home to make my hospital stay more comfortable?
  • How long do you expect the surgery to take?
  • How much time will I need to take off of school or work? Who in your office to I contact for the forms needed to excuse me from school/work?
  • When will I be allowed to exercise again?
  • Will I be allowed to drive?
  • What are your recommendations for pain management?
  • What can I do to minimize scars?
  • Will I need help bathing?
  • Do you have any documents/publications that can help me and my caregiver(s) prepare?
  • How do I reach you in between appointments, in the evenings or after hours?

Chemotherapy treatment is the use of strong medications to treat cancer. By putting these drugs into the body, doctors attempt to kill the malignant cells that multiply. Chemotherapy, which is used to either keep cancer from spreading, shrink a tumor, slow the growth of cancer, kill off cancer cells that may be left after other treatments are completed, or cure cancer, can be used alone or in conjunction with other treatments.

In addition to killing cancer cells, some chemotherapy drugs can also kill healthy cells that multiply, such as gastric cells or hair follicles. Because of this, some people experience hair loss. Before you start treatment, you might want to buy a hat or two that appeal to you so that you will have them on hand if you need or want to cover your head.

Some people find that taking control by cutting short or shaving their hair is a good idea to help avoid any depression that may be brought on by losing hair gradually or in clumps. You may also wish to purchase a wig to wear until your hair grows back. Your medical team can direct you to shops that cater to oncology patients. Some insurance plans cover the cost of wigs and your medical team may also have information about organizations that help defer the cost of wigs.

Chemotherapy treatment can have short-term and long-lasting effects on the body. Some of those effects may include mouth sores, nausea, vomiting, fatigue and foggy thinking. There are medications that can help manage some of those conditions. If you experience nausea, there are plenty of ways to take control of it. It is important to think of nausea control just as you would pain management- stay on top of the symptoms. It is much easier to control if you address the symptoms when they are mild than when they are more severe. If the medications prescribed by your doctor do not help, make sure to tell them. There are many different anti-nausea drugs and combinations of drugs that can help ease the discomfort. Non-medical ways to ease nausea include keeping a little bit of food in your stomach, peppermint or ginger teas, or even accu-pressure wristbands. Your medical team wants to know about any changes that are happening to your body during treatment, whether or not you think it’s a side effect of chemo.

There are many different types of chemotherapy and each drug is given in different doses and in different ways. Ask your medical oncologist exactly what you will be taking and how it will be administered. Some treatments require hospitalization. Others can be administered in an outpatient clinic while still others are taken at home in a pill form. It is a good idea to keep records of the medications and dosages that are given to you. Depending on how your chemotherapy is given and how it affects you, you may be able to continue normal activities or some activities during your treatment.

Questions for your Medical Oncologist/Hematologist Oncologist:

  • What are the typical side effects of this medication?
  • Will I lose my hair?
  • How long can I expect to be at the cancer center for my infusions?
  • What can I bring to make my infusion more comfortable?
  • Will I be allowed to eat during my treatment?
  • What are some ways to prevent the side effects you mentioned?
  • How do I reach you in between appointments, on the weekend or after hours?

There are a number of different types of radiation treatments, and procedures differ from hospital to hospital. But the essence is that radiation kills multiplying cells. The most common type of radiation treatment is beam radiation. In addition, gamma knife radiation, cyberknife radiation, and proton therapy are recommended for specific types of tumors.

If your treatment plan includes radiation, it is important to know what will be required of you, how many treatments you will have, and what your schedule will be. Talk to your radiologist about setting a schedule that works for you. Many people are able to continue working while they are having radiation treatments, although some feel less energetic than they did before the radiation began. You should ask your medical team about the best way to protect your skin from radiation “rash” or burning during your treatment.

Questions for your Radiation Oncologist:

  • What is radiation therapy? Are there different types of radiation?
  • How many weeks will I receive radiation? When will treatment begin and end?
  • How long will each treatment take? What does a typical appointment look like?
  • What are the short-term and long-term side effects of radiation?
  • Could this treatment affect my fertility?
  • Do I need to be concerned about sun exposure?
  • Should I avoid certain food, vitamins, or supplements?
  • Can I schedule my radiation treatments around work/school?
  • Will there be any restriction on my daily life? Will I be able to exercise?
  • How can I prevent burns on my skin during treatment?

Exercise can be important to both physical and mental well being before, during and after treatment. Many studies show that exercise can speed recovery after surgery and treatment as well. It can also counter feelings of depression or sadness.

Please make sure you check with your medical team before you start exercising. Some medications can cause dizziness and might preclude certain activities, and some surgical procedures might dictate what movements should or shouldn’t be started.

It is a good idea to start slowly as you begin to get active again. You can even start while you are in bed, with basic breathing techniques and light stretching. Brisk, short walks have been known to counter fatigue, and gentle yoga can help you feel centered while also moving your body. While exercise is important and productive, remember that rest is also very important and it is crucial to strike a balance between the desire to get moving and side effects of your treatment. Do what you can and listen to your body.

Physical therapy is a great way to start moving again and is covered by most insurance programs. You will receive personalized movements and an exercise regimen to do either on your own or at your local gym. Make sure to get a referral from your oncologist and to verify with your insurance that it is in-network.

Consider joining a free program Ulman provides for cancer survivors – of any age or treatment status – Cancer to 5K.

Nutrition during treatment is something that can help balance your side effects and provide comfort in your day to day life. While it may be easy to reach for the comfort foods immediately following your diagnosis and during treatment, it’s important to maintain a balanced, heart-healthy diet. This doesn’t mean that you have trade in your mac and cheese for a kale salad; it just means to find some balance.

Some treatments may restrict your diet. If your white blood cells are low, you may need to go on a “neutropenic diet”, which limits possibilities of infection. It generally includes cooked produce and limits intakes of foods with a risk of infection. Some chemotherapy treatments may impact your taste buds- some medications may make foods taste metallic, or you may find that your tastes in certain foods change. Use reusable plasticware or other non-metal materials for your travel mug, forks and knives, etc, to combat the metallic tastes. Fortunately, most of the taste bud side effects subside overtreatment.

There is a lot of anecdotal information regarding diet and cancer, but not as much research-based evidence. One thing that most people agree on is that a heart-healthy, plant-based diet is nutritious for everyone. Try to make half your plate veggies or fruits, with small portions of animal proteins and whole grains. If you’re thinking of including organic produce, check out the Clean Fifteen and Dirty Dozen. Search for products with the fewest ingredients as possible, and remember that cooking at home can be fun!

View more information about nutrition & cancer.

“Life never seemed so precious as it did when I was in the throws of my diagnosis. And never did a problem seem so overwhelming. But the thing that kept me going and that I believe resonates in the human spirit is the ability to hope. As I stated earlier, through counseling I came to focus on hope. This propelled me to want to get better and to do something about my situation. I focused my energy where it could best be of help and I hope that you can do the same.” – Doug Ulman

The Ulman Foundation, along with the National Action Plan on Cancer Survivorship, defines “cancer survivor” as anyone who is living with, through, and beyond cancer, referring to those who are diagnosed and those who are affected by that diagnosis including loved ones and caregivers.

You are a survivor from the moment of diagnosis – when someone tells you – “you have cancer” – through treatment and for the rest of your life. There was a time when curing and or treating the cancer was the sole focus of the patient and the medical team. As research has progressed and there are many treatments that are often very successful in managing and controlling cancers, there is a new focus on survivorship and quality of life throughout the entire process.

There are long-term issues and side effects, both physical and psycho-social to be aware of. Many medical practitioners discharge their patients without addressing the long-term effects of cancer. It is important to ask many questions of your healthcare team.

  • What should I expect in 5, 10 and 15 years?
  • What secondary cancers and other medical problems should I watch for?
  • When and how often should I be examined?
  • Will I experience ongoing fatigue, pain, infertility, sexual dysfunction?
  • Will I experience depression?
  • Please give me a referral for mental health support?
  • What resources are available to help me deal with these issues?
  • Could my treatment have long-term effects on my cognitive abilities?
  • Who will follow me for long-term care?
  • What information should I be supplied?
  • What are the treatments that I had, the medications that I took?
  • What are the long-term effects of different medications and treatment plans? {This information should be supplied before treatment decisions are made.}
  • How do I deal with the fear of recurrence?
  • Will I be able to be insured?
  • How do I re-enter my former life?
  • Will I face job discrimination?

Each of us has a grant of time. Of course, we don’t have any way to predict how long our grant of time will be. Each of us eventually will face our end of life. When death approaches, whether due to cancer or other causes, we have choices.

Choices about care

Choices about approach

Choices about attitude

Choices about dealing with relationships

Choices about pain control

There are times when all available medications, treatments, trials, and options have been exhausted and it becomes clear that the cancer is not to be cured or held in check. After thoughtful consultations with the medical professionals, each survivor dealing with the reality of the impending end of life will make extremely difficult decisions. It is very hard to balance the need for the quantity of time and quality of time.

Should one keep trying to beat cancer or acknowledge that there are no more options and begin to plan for death? Some survivors choose palliative therapy to keep the cancer at bay for a short time. Others choose to discontinue treatment and use medication to control pain to be as comfortable as possible. There are no right or wrong decisions. Each person weighs their options and comes to the best answer for their particular set of circumstances.

Professional help is available for people facing end of life and many folks find it helpful to talk about their feelings. Often modes of relaxation, yoga, or visualization are found to be useful. There are trained mental health professionals as well as hospice personnel available to assist in facing these tremendous challenges.

National Hospice and Palliative Care Organization can be reached at www.nhpco.org or 800.658.8898 for support and care. If time allows, there are things that some people choose to do to prepare themselves and their loved ones for their end of life.

Some spend time doing things that they have always wanted to try; something new and perhaps lasting like ceramics, painting, scrapbooking, visiting a place they have wanted to see, planning or planting a garden, writing, or knitting. Many want to spend as much time as possible with loved ones. Some people choose to give gifts of their special possessions or establish a special scholarship or memorial fund. Some want to be as physically active as they possibly can. Some choose to write to loved ones or prepare gifts for loved ones to receive from them after they have died. Some people may want to be more solitary.

Often, people want to help those dealing with end of life, but they do not know what kind of help to offer. Here are some ideas you may want to pass on to those people.

  • Speak to me about your feelings.
  • Send me a note {please – not a get well card}.
  • Email me, text me, just stay in touch! – If I can respond I will.
  • Cry with me or just let me cry.
  • Laugh with me too.
  • Spend time with me.
  • Remember that I might still want to do fun things and have light  conversation.
  • Let me talk if I want to and let me be quiet if I choose.
  • Offer my caregivers a break so that they can get some much needed rest.
  • Keep visiting.
  • Ask me what I need.
  • Bring music, movies, games or anything to relieve the tension.
  • Avoid cliches and don’t pretend that everything is ok.
  • Be present with me.
  • Perhaps you can help me complete some unfinished tasks.
  • Assure me that you will take care of things for me.
  • Hold my hand.
  • Share memories.
  • Let’s hold on to hope – hope for peaceful and pain free end of life.

Considered to be the model for quality compassionate care at the end of life, hospice care involves a team-oriented approach of expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s wishes. Emotional support also is extended to the family and loved ones. Generally, this care is provided in the patient’s home or in a homelike setting operated by a hospice program.

In recent years, many hospice care programs added “palliative care” to their names to reflect the range of care and services they provide – as hospice care and palliative care share the same core values and philosophies. Defined by the World Health Organization in 1990, palliative care seeks to address not only physical pain, but also emotional, social, and spiritual pain to achieve the “best possible quality of life for patients and their families.” Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process.

To better serve individuals who have an advanced illness or are terminally ill and their families, many hospice programs encourage access to care earlier in the illness or disease process. Health care professionals who specialize in hospice and palliative care work closely with staff and volunteers to address all of the symptoms of illness, with the aim of promoting comfort and dignity.

There are also practical decisions that some people like to make for themselves.

  • Some may want “Do Not Resuscitate” or DNR directives.
  • Some may want to arrange to donate organs.
  • Some may need to have a will drafted.
  • Some may want a living will drafted.
  • Some may want to discuss burial desires and funeral arrangements.
  • Some may want to plan to die at home while others would prefer to be in a facility.

Caregivers and loved ones may also need professional help to assist them in helping their loved one through this time and to help them deal with their own feelings.

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