Be An Informed Patient: Questions to Ask Your Oncology Team About Your Cancer Treatment Protocol

by Margot Malin, Founder and CEO of Lots To Live For, Inc.

A longer version of this blog post originally appeared on the Breast Cancer Yoga Blog in a post dated 10/9/14. You can view the full post entitled 22 Questions to Ask Your Oncology Team About Your Cancer Treatment Protocol by clicking HERE.

Patients who are well informed and take a proactive role in making choices about their cancer treatment protocol are likely to be more comfortable as they progress through treatment. Knowledge is empowering and knowing what to expect and what comes next demystifies the process.

Be Your Own Health Advocate

Be your own health advocate by asking questions to become informed and “buy in” to your treatment protocol. It is a good idea to bring a friend or relative with you to medical appointments both for emotional support, and also because a second set of “eyes and ears” might understand what is being said differently, they may think of a whole different set of questions, or might interpret ambiguous or confusing information in a different way.  Take notes so you can remember what was discussed. After all, going to a doctor can be both emotional and terrifying.

Here are just a few of the 22 questions in the original post to ask your oncology team about your cancer treatment protocol: 

• What is the goal of chemotherapy and/or radiation for my cancer? 
• Why are you recommending chemotherapy / radiation? If you had cancer would you treat yourself with this protocol? How long have you been prescribing this treatment and how many patients have received it? 
• Which specific chemotherapy drugs will I be given? What are your expectations for this medication? Are there other options that can produce the same or similar results? 
• What has the success rate been? Do you expect that the tumor will disappear completely, or just shrink in size? Will the cancer start growing again after treatment?
• How will I know if the chemotherapy or radiation is working? How do you plan to assess the effectiveness of the treatment? 
• What is the likelihood that my survival time will be increased as a result of this treatment? What is the expected survival time increase as compared to no treatment? 
• What is the likelihood that my quality of life will be improved after I receive this treatment?
• What are the risks associated with this treatment with regard to morbidity (adverse effects from the treatment), mortality and the risks of developing another cancer?
• What can I do to prepare for treatment and decrease the chance of debilitating side effects?
• What side effects should I expect and how long will they last?  What can I do to reduce uncomfortable side effects if they occur? (please visit www.LotsToLiveFor.com for products to reduce and relieve side effects of cancer treatment) 
• Are there any clinical trials which might be suitable for me which I might want to explore? 
• Does your practice or does this facility offer an Oncology Nurse Navigator for their patients? (See blog post entitled “What is an Oncology Nurse Navigator?” At http://lotstolivefor.blogspot.com/2012/04/what-is-oncology-nurse-navigator.html)
• What lifestyle changes will I need to make to prepare for treatment, during treatment and after treatment with regards to: Diet, Activities, Work and Exercise?
• Do you recommend complementary therapies such as yoga, exercise, acupuncture, meditation, and do you have other suggestions? 

Receiving a diagnosis and discussing treatment options can be overwhelming. It is helpful to be prepared for appointments with a concrete list of questions and to take thorough and complete notes. Sometimes it helps to try to take a step away, and approach the discussion clinically. As hard as it is, try to be unemotional and evaluative. Do research, take notes and keep thorough records. We hope these questions will help you take control, and understand your treatment better.

To be forewarned is to be forearmed. Know your options and embrace your informed decisions.  Be your own health advocate! Information empowers, allows the opportunity for choices and makes patients more comfortable with their protocols, and ultimately can improve outcomes.

If readers of this blog post have additional suggestions to add to this list, please comment on our Facebook page at: www.facebook.com/LotsToLiveFor

You can visit the original Breast Cancer Yoga Blog Post and read all of the 22 Questions for Your Oncology Team by clicking: HERE

Lots To Live For, Inc. offers a collection of cancer resources. Visit Lots To Live For, Inc. for products to help reduce and relieve the unpleasant and uncomfortable side effects of radiation and chemotherapy and to learn more about cancer care products. 

6 Tips to Help Cancer Patients Become More Organized and Comfortable During Treatment

by Margot Malin

This is a condensed version of a longer post that was published on the Breast Cancer Yoga Blog entitled:

Cancer Pre-Treatment Check List – 6 Tips To Make Your Life Easier Once You Begin Treatments

You can read the full post at: http://breastcanceryogablog.com/2014/01/22/cancer-pre-treatment-check-list/

Receiving a diagnosis of cancer can be overwhelming. There are so many questions swirling through your mind and so many things to put in order. Here is a short list of 6 tips suggested by other patients to help make your treatment both more comfortable and better organized.

1. Familiarize Yourself with Your Medications and their Side Effects
2. Schedule a Dental Appointment
3. Order some new products in advance to test them to see if you have any reactions to them, and to see if you like their feel and other characteristics.
4. Make a list of things that need to be done and circulate it to friends and family so that they can sign up to help you.
5. Create a treatment goody bag for yourself
6. Meet with a Naturopathic doctor

Each of these 6 tips should help to reduce the uncertainty and confusion that come with a cancer diagnosis and treatment plan. Try to organize and simplify your daily schedule whenever possible. Don’t forget to ask for help!

You can find products to add to your "Treatment Goody Bag" at www.LotsToLiveFor.com
Lots To Live For, Inc. sells products to reduce and relieve the unpleasant and uncomfortable side effects of cancer treatments including surgery, radiation and chemotherapy.

Donate Your Data from Cancer Commons - Share Your Medical Data Anonymously

By Guest Blogger Sarah Stanley

This is a condensed version of a blog post entitled "Donate Your Data– Share your Cancer Story to Help Yourself While Helping Others"

A decade ago, Internet entrepreneur Marty Tenenbaum was diagnosed with melanoma. He visited several local oncologists, but each doctor recommended a different treatment strategy. With no clear solution, he decided to enroll in a clinical trial that was testing a melanoma vaccine.     

Donate Your Data Dashboard

The vaccine failed the trial. But, for reasons unknown, it saved Tenenbaum’s life.

Inspired by the difficulty of navigating his options, and the need for better ways to figure out which treatments will work for which patients, Tenenbaum founded Cancer Commons—the first & only open access nonprofit collecting and learning from real patient experiences to give patients the information they need.

To support this mission, Cancer Commons has now launched its new Donate Your Data (DYD) Program, an online registry that empowers people with cancer to anonymously share their cancer experiences to advance research and, in return, inform their own clinical care.

To learn more about Donate Your Data please watch this video:

https://www.youtube.com/watch?v=f3NyZlP5gV4

For now, DYD is available only to lung cancer and melanoma patients, but Cancer Commons will soon be expanding to cover most cancers. If you have or have had melanoma or lung cancer, please consider joining Cancer Commons in making the dream of personalized cancer treatment a reality for everyone. DonateYour Data now.

For more information, visit http://www.cancercommons.org. Follow Cancer Commons on Facebook and Twitter.

5 Point Plan for Better Cancer Outcomes: Focus on a Natural Approach to Cancer

Complementary Medicine Options and Life Style Choices to Help Cancer Patients From a Patient/Advocate Perspective

By Ann Fonfa (founder Annie Appleseed Project), guest blogger

I was diagnosed with (breast) cancer in January 1993 at the age of 44. At the time I was suffering from extreme Multiple Chemical Sensitivity. I felt that the oncologist I consulted was incredibly dismissive of a health issue that caused me to take to my bed 3-4 days at a time. I was reacting with long-lasting headache, dizziness, nausea, rashes and more from exposure to fragrances, cleaning products, wet paint, formaldehyde (new furniture/carpeting), etc.

So I chose to explore what was then called Alternative medicine. My search brought me a lot more information than expected – specifically a wealth of information about nutrition - which is where I started. At this point most people have heard what is healthier to eat, but some have resisted actually doing it. If you want to reduce your risk of cancer occurrence, recurrence or to just be healthier, you MUST give up so much sugar, NO soda, and NO deep-fried foods. It’s that simple – these items (chips are deep-fried), are just not real food. We’ve let ourselves fall into these awful habits, so darn easy to eat chips at lunchtime instead of a salad or an apple.

Back to alternative cancer ideas: After some years, yoga became totally acceptable to the point that many cancer centers and most support groups offer it. Studies have shown that it really makes a difference to our health. The concept of complementary therapies was introduced and has gradually become accepted. There are simple and natural substances and protocols that could reduce toxicity and enhance the value of chemotherapy and/or radiation. (Here’s our Free Handout of Natural Strategies to Reduce Toxicities). Complementary therapies began to be called integrative because they COULD be used while undergoing conventional treatments. Let’s face it, the treatments offered by the mainstream cause harms – ranging from short-term to longer-lasting. Why is this allowed even now?

I have been gathering information about cancer prevention and treatment, and sharing it via the nonprofit I founded in June 1999: www.annieappleseedproject.org The Annie Appleseed Project provides information, education, advocacy and awareness for people with cancer and their family and friends. The Annie Appleseed Project offers information on natural therapies and substances, lifestyle issues, and complementary or alternative medicine, from a patient’s perspective. This is gathered in part from our network of volunteer advocates who attend educational cancer meetings around the globe, from medical, scientific/research journals, and emails from supporters.

It’s out there, it’s been studied. Sadly many researchers feel the need to look at natural substances the same way pharmaceuticals are examined, even though many natural items have been shown, during hundreds or thousands of years of human use, to be quite safe (except for personal allergy). Doctors have been taught to expect pharmaceutical-style clinical trials – but here’s the catch. The cost of a clinical trial, what is called Level 1, is in the hundreds of millions and natural protocols simply cannot be patented (nor should they), thus no pharmaceutical company is interested. This barrier is one I wrote about in a journal article many years ago and this still has not changed. Another major issue that blocks the full use of complementary therapies is the lack of insurance reimbursement.

The Annie Appleseed Project has a five point plan for better health in general and better outcomes if you have been diagnosed with cancer:

1. Eating Right If someone wishes to do a range of inexpensive, simple and protective things, start with healthier eating – adding more fruits and vegetables to the diet. Remove SODA and Deep-fried foods, eat less sugar and less salt; and add whole grains.

2. Physical Activity Take a walk, dance, shake, swim, bike, etc. on a daily basis. Good news from author Antronette (Toni) Yancey, MD, MPH, whose book Instant Recess explains her theories. Just 10 minutes a day of physical activity, full-out, is enough to keep our bodies healthy. Many studies have shown that physical activity is very beneficial to people going through treatment for cancer, or in recovery. Combining physical activity with healthier eating is EVEN better than either separately – studies show that too.

3. Dietary Supplements Fish oil, probiotics, vitamin D3 and curcumin are the basics because everything else depends on what you personally may need. You can visit a clinical nutritionist who does blood work, or you can get your own eating patterns assessed. Your doctors can test you for vitamin D3 but it seems from the recent work done in this area, that almost no one has enough vitamin D3. Make sure you supplement if you are low. The darker your skin, the more vitamin D you may need.

4. Detoxification We live in a world filled with chemical exposures, as a chemically-sensitive person (although I am so much better than I used to be); I KNOW when the air is bad. Plastic materials surround us, many being shown to be harmful. Pesticides in our food supply, and our water, formaldehyde and parabens in our clothing, furniture and hair/skincare products are all part of this problem. But some detoxification is possible – cilantro, dandelion leaves OR parsley can help the body remove heavy metals – one of these should be eaten every day. Making fresh (organic) raw juices can help a lot too. Using hot and cold showers, foot baths, far infrared saunas and more, can all help detox. Again our website can be a help in finding ideas. Always drink lots of water – do you have a simple filter? It’s better to filter your water than drinking it straight up these days. Try to drink from a BPA-free carry bottle.

Never use plastic in your microwave, better yet - DON’T use the microwave. It is really a time management issue. If you know you want to eat at 6:30, turn your oven (or toaster-oven) on ahead of time. Or eat a BIG salad for dinner. Some say eating less at night is healthier. I personally eat a big breakfast, a salad for lunch, and often fruit and nuts for dinner.

5. Relax and Enjoy Life Yoga and meditation are not the only ways to relaxation – that which gives you pleasure should be your focus too. Are you a gardener, a grandparent, a bowler – focus on your joy in action. I attended a meeting in Brussels, Belgium in 1999 – the second international conference ever held by the National Breast Cancer Coalition. My sister came with me as we planned, excitingly, to travel to Amsterdam together. She was astounded by the party held at the end of the conference. I asked her whether she thought we ought to be sitting around and crying instead of dancing? She realized then, as we all should, that life is RIGHT NOW. We are meant to enjoy this moment. If I had spent the last almost twenty years worrying about dying from cancer, that would have been an enormous waste of my life.

Happily I didn’t. I enjoy each day and live it fully. You should too.

For those seeking more information you can visit our Annie Appleseed Project Facebook page, follow us @annieappleseed on Twitter, visit our website www.annieappleseedproject.org (you can opt in for our monthly e-newsletter). We’ll host Evidence-based Complementary & Alternative Cancer Therapies conference February 28-March 2, 2013 in West Palm Beach, FL. Some scholarships are available for those in need. We offer CEs and CNEs for professionals. 5 organic meals, exhibits, networking, giveaways, much more. Ann Fonfa is the founder of the Annie Appleseed Project.

To learn about products that can help reduce and relieve the unpleasant and uncomfortable side effects of chemotherapy and radiation treatment please visit www.LotsToLiveFor.com

This blog post is part of the Resource Roundup series sponsored by Cancer Blog: Lots To Live For! in which the spotlight is shined on a resource that can help improve the journeys of cancer patients and caregivers. A Past Resource Roundup  was Caring Bridge.