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. 

Survive and Live Well – Internet Radio for Cancer Patients, Cancer Survivors and Cancer Thrivers

By Elyn Jacobs, Guest Blogger and Cancer Coach

I am no stranger to cancer. My father survived prostate cancer fifteen years ago; my mother battled breast cancer for thirteen years and lost her battle months after my own diagnosis. My sister would then be diagnosed mere months later. I was 45. We were young and healthy; young, healthy people don’t get cancer. We were wrong. We had to be missing something.

I reflected on my mother’s life with cancer. My mother’s journey was strife with episodes of doctor’s orders, not teamwork, and I had to intervene many times. I knew that she had been pushed into one final treatment that had little promise, and was to be the cause of her sudden and rapid decline. With one last gasp of air and the flickering of her eyes, she was gone. The fear in her eyes as they flashed and she fell silent is a sight I would never forget. It haunts me. I don’t want to die like that, of the terrible death cancer inflicts. I would not let this cancer take me from my two wonderful boys. I then reflected on my own journey. I had an incredible team of doctors who empowered me to take control of the situation and to be an active participant in my care. My questions were answered, my voice heard. Clearly, to have the best outcome, one must have a great team who is willing to work as a team. Still, team Elyn knew that just because treatment had ended, life without cancer had just begun.

I realized that I would do everything possible to avoid recurrence and to help others avoid getting this disease. I began with extensive research to better understand the causes which led to certain lifestyle changes I have made. I learned that healing requires more than just the best medical team. I learned that by changing the environment in which my cancer was permitted to grow, I could reduce its ability to take hold again. I found there was a gap between utilizing the best of medical science and supporting the body’s own innate ability to heal itself; nature provides ample resources for healing as well as enhancing conventional cancer treatment, but this ability requires support.

I like to say that my encounter with breast cancer propelled me on a life-changing course. One that took me from the darkness of cancer to empowering women to find the best treatment and team for their cancer, and to move on to a life of wellness. I realized that I could not return to my Wall Street job. I knew I had found my new passion. I wanted to be the voice. I wanted to make sure that all women were heard by their doctors and received the best possible care. I wanted to help women to reduce their risk of recurrence. I wanted others to know the value of complementary therapies during and post treatment. I wanted to help others get past their cancer and into cancer-free lives. I became a cancer coach. My life would be forever changed.

However, along this path I realized that coaching was not enough. I decided to host a radio show to give people access to doctors, peers, and critical information direct to their home or office. My show, Survive and Live Well, tips to treat and beat cancer, is part of the Cancer Support Network, W4CS.com. (Women4CancerSupport). Join me weekly as I chat with the experts; hear the stories and paths taken by those who have traveled before and alongside you. We have an amazing lineup; upcoming shows will cover surgical options for breast cancer, genetics, and alternative options for treatment. Want a peek at upcoming guests? Click here for the show schedule of bios of past and future guests. We have fun, we learn a lot. You can listen live Tuesdays at 1pm, EST, by logging into http://www.w4cs.com/. Join us in the chat room to chat with other guests and to ask questions. Find the best options for you, for your cancer. Learn how you can help prevent recurrence and minimize the treatment side effects that compromise your health and well being. My goal is to empower you with information to help you regain control of your health; to not only treat cancer, but beat cancer, survive, thrive and live well.

To view a list of upcoming and past shows click here. Past shows/interviews have been archived and are available for you to listen at any time on your computer. There is no charge to listen to upcoming or archived shows. Click here for guest bios and topics.

                                  

Elyn Jacobs

http://www.elynjacobs.wordpress.com/

Twitter @elynjacobs

Facebook @Elyn Jacobs and @Elyn Jacobs Consulting

Linkedin @Elyn Jacobs

Elyn Jacobs is a breast cancer survivor, professional cancer coach, radio talk show host, speaker, and the Executive Director for the Emerald Heart Cancer Foundation. Elyn empowers women to choose the path for treatment that best fits their own individual needs. She is passionate about helping others move forward into a life of health and wellbeing. Elyn lives in New York with her husband and two young boys. To learn more about Elyn’s coaching services, please visit: http://elynjacobs.wordpress.com. To tune into the Survive and Live Well radio show, please visit www.W4CS.com, Tuesdays at 1pm (EST).

To view products and other resources that can be helpful to cancer patients please click here: http://www.lotstolivefor.com/

Not My Mother's Journey: Author Heather St. Aubin-Stout Shares Her Personal Story

Guest Blog by Heather St.Aubin-Stout; author: Not My Mother’s Journey

The Importance of Sharing Your Story - Catharsis and Inspiration

Heather shares her personal story about breast cancer and her passion about supporting those going through the journey.

From the time I could read and write I wanted to be an author.  Looking back on this now, I'm not sure this was really what I wanted to do or if this was something that was projected onto the oldest daughter by her mother who loved to write.

Although I went to college for architecture, and had a career in the field of architecture before my children were born, I continued to write for myself.  After staying at home, working part time substitute teaching and doing much volunteer work I was ready to go back into a career when I was diagnosed with breast cancer.

Then in 2009 at forty-six and in remission for a year after two bouts of breast cancaer within the last three years, I began to write again.  It was a release, it was cathartic, and although it was also painful to re-live everything, if was also exciting to do something I had thought about for years.

I felt the need to write about my experience and how it was different from my mother's, who at forty-five died from breast cancer just a year and a half after her diagnosis.  A life unfinished.

I was twenty-four at the time and two weeks away from getting married. Her doctor had told her not to plan on being at my wedding. Of couse the month before - when he told her that - we were outraged.  A few days before she died, the hospice nurse asked what I would do if my mother didn't live to see me get married.  I broke down in tears; it was unimaginable to me that she might die in the next week.  At this point during her illness my mother was not the mother she had been during the rest of my life.  I just refused to see it.

My mother was a stay at home mom, she was there for my two younger sisters and me while we were growing up.  She went back to school when I was in college, moving from ther Bachelors to a Masters in Clinical Psychology.  She was disgnosed during hter second year.  She plowed ahead with internships, classes, and her thesis anyway while she was going through treatments.  However, she never did get her thesis completed.  My father, sisters, and I accepted the first posthumous degree ever awarded from University of North Carolina at Charlotte the year after her death.

For years it seemsed cruel to me that death took her before she could finish her degree and experience the rewards of a career.  However, looking back on it now, she shaped all of our lives during those years she was at home with us.  This is a gift I've just now begun to realize and treasure.

So, here I am at forty-eight and trying something new. I've reinvented myself, yet again.  I've found, as I've matured, gathered those life experiences one can only gather from aging, that each of us has many facets to ones self.  These parts of ourselves can come out when we don't expect it.  Breast Cancer did this for me.  It taught me humility, patience and perseverance.

My book, released in January 2011, Not My Mother's Journey is my story, my mom's story and hopefully it will encourage anyone facing a diagnosis of cancer to be their own best advocate - our doctors have many patients, but we only have one.  Ask questions, interview your doctors, share your journey with others, because it may help someone else.

Ironically, despite the similarities of being diagnosed about the same age as my mom, I tested negative for the BRACA genes (a genetic predisposition).  So when my cancer recurred at the one year scans, the same time my mom's had metastasized, I had to battle psychological demons for the second year in a row.

As of this writing I'm in remission...with my friend NED- No Evidence of Disease!

So my journey continues to evolve and for this I am grateful.

I hope I've written a compelling story, that makes the reader think, one that you can relate to, and one that will validate your own feelings.  I hope it is a story that moves and inspires you in your life.  I have tried to do this.  You tell me!  You can visit my website at http://www.sharingmystory.com/ and connect with me. I welcome your feedback.

You may purchase my book via the website http://www.sharingmystory.com/, by clicking the Amazon link above, from http://www.barnesandnoble.com/, www.xlibris.com in print or ebook format.
 
For products that can be helpful in relieving uncomfortable and unpleasant side effects during treatment for cancer please visit http://www.lotstolivefor.com/. This is a useful and informative website for patients, caregivers, oncology nurses, cancer coaches and friends and relatives of cancer patients. On Facebook we post helpful information about new developments in cancer treatment, new products and resources. Please "like" us at www.facebook.com/LotsToLiveFor
 
To be your own best health advocate, consider purchasing the Minerva Health Manager personal health record software.  It might help to save your life. You are your own best advocate!

Cancer Coach - Trained to Help Cancer Patients Along Their Journey - Could a Cancer Coach Help You?

BREAST CANCER. A CO-ACTIVE COACHES JOURNEY
by Sue Bock (guest blogger)

Breast cancer. When I first heard the words, I was stunned. The earth dropped out beneath my feet. As time passed, my feelings evolved, the roller coaster ride of emotions from high to low became more of a child’s ride. I went from craving knowledge to how will I carry myself through the journey of treatment and after. I was already a trained co- active life coach, now how will that help me?

A Co-Active Coach trained at the The Coaches Training Institute uses a “tried-and-true approach that provides a powerful process for engaging with others and is supported by current scientific research. Our program is built on the cornerstone that we are all naturally creative, resourceful and whole and that we all possess the capacity for knowing what is best for ourselves. From this place, the Co-Active Coach comes from a place of authentic being, listening and encouragement, to uncover the best in oneself and others.” This is where I started. Now I help other breast cancer survivors transition from breast cancer treatment to breast cancer thriver. Leading a fulfilling life is possible after breast cancer. After the dust settles and the “normal” life returns, a Wellness Coach partners with the client to pave a path, so to speak. The client makes choices to answer the burning question of, “what is next?”

There are many hurdles to jump after breast cancer, and a Co-Active Coach is there to soften any bumps along the road. Often after breast cancer, women (and there are some men) find themselves at a loss. No longer is the support the same. The medical team is less a part of their lives and it may feel like they are alone in their quest to find answers. Coaching is a way to creative problem solve in a positive and safe environment.

In The International Journal of Interdisciplinary Social Sciences, Pam Schmid shared the following testimonial:“Coaching made lasting, positive changes in the cancer survivors’ llives. Instead of being stuck, they have a partner to start moving ahead to be their best,” said Schmid. “As one survivor told me, ‘This is not like anything I’ve experienced. It’s given me a pathway out … I need to move forward to do the things I know I need to do to be my best’.”

I inspire women to dream, change, and live life’s adventure courageously. Breast cancer doesn’t define you. It frees you to arrive at different choices.

Cheers

Sue Bock

You can visit Sue's Courage to Adventure Coaching website by clicking here

For products that can help reduce and relieve cancer treatment side effects visit: http://www.lotstolivefor.com/