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. 

Seize the Days: Interviews with Cancer Patients and Survivors Provide Inspiration

Celebrating the Ways Cancer Patients Add Life to Their Days 

by Evan J. Lipson, M.D., guest blogger  

Dr. Evan Lipson is an oncologist who launched an organization called "Seize the Days" in order to celebrate people living with cancer and explore the ways they make their days meaningful. The project gives patients and their loved ones an opportunity to record and share their stories using broadcast-quality audio interviews, which are available to view at www.seizethedays.org.

Interviews on the website from over 50 patients demonstrate that people living with cancer add life to their days in all sorts of interesting and remarkable ways. Some people strengthen relationships with loved ones, becoming even closer with family and friends. Other people concentrate on activism, starting foundations or fundraising. Some derive fulfillment by creating something - art, poetry, or music. These creations help patients express emotions, leave a legacy, or regain a sense of control.

Dr. Lipson

One of the reasons for developing this site is to showcase the spirit and courage of cancer patients in order to inspire others. In addition, the website provides patients and families an avenue through which they can share and memorialize their stories and those of their loved ones. To learn more and listen to these compelling, touching interviews, visit www.seizethedays.org         

Evan J. Lipson, M.D (oncologist)

President, Seize the Days, Inc., a 501(c)(3) non-profit corporation

http://seizethedays.org

You can also become a facebook fan when you visit the website.

To learn about products that can help alleviate unpleasant and uncomfortable side effects caused by chemotherapy and radiation please visit www.LotsToLiveFor.com. This website offers products to soothe and heal radiation burns and radiation dermatitis, combat nausea, help compromised skin, help mouth sores and dry mouth, and more.

Imerman Angels - Connecting Cancer Fighters, Survivors and Caregivers

By Jonny Imerman
Chief Mission Officer, Imerman Angels

Imerman Angels provides personalized connections that enable 1-on-1 support among cancer fighters, survivors and caregivers.      

On a Thursday morning in October 2001, my world came to a standstill. At 26 years old, I was diagnosed with testicular cancer. Although the surgery to remove my left testicle went well, it soon became clear that the cancer had spread, or “metastasized”. The disease was making its way up my body.

I knew what was nextchemotherapy -but I did not understand what that meant. What color is it? How will it make me feel? I called my brother. I started sobbing. I could barely talk. My world was shattered. But, I was not going to give up.

My oncologist told me that the treatments might make me sterile. So, I went to a cryogenics laboratory to bank sperm. After that, it was time to start intense cycles of chemotherapy.

The treatment weakened my body and wiped out most of my white blood cells. In fact, I was in such bad shape, the doctors were forced to delay my chemotherapy while my body recovered between cycles. In addition, the chemotherapy caused many side effects: throat sores, mouth sores, skin rashes, dry skin, cystic acne, extreme fatigue, hair loss, numbness in my fingers and toes, and partial hearing loss. But the most damaging side effect was a blood clot that developed in my left arm. The clot formed around my port, a medical implant that was an access point for my chemotherapy. The doctors had to remove my port, pull out most of the blood clot, and then pump me with blood thinners to break up the rest.

At last, after five months of brutal chemo treatment, I thought my fight was over. I slowly returned to the gym, started going out socially, and got back into life. Although I was happy to be alive, every day was a challenge. I did not have as much energy. I looked different. I struggled to find my post-cancer identity. Just as I was getting comfortable with myself, I learned the fight was not over.

Nearly one year after chemotherapy, a routine CT scan showed four tumors along my spine. Rather than risk cutting the spine, the surgeon went in through the stomach. He made an 11-inch incision, placed my organs to the side, and took out each tumor. The surgery lasted for four hours. It was successful, and finally I was freed from the disease and able to begin my road to recovery.

But my journey was certainly not over. I had made a vow to myself during the time that I was battling cancer. I had looked at others in the oncology clinic and realized that I was different. Each day, my room was filled with family members, close friends and my great doctors. With so much support, I did not have a chance to lose hope. However, in many of the other rooms, hope already seemed lost. As I walked down the hall with my chemotherapy IV-pole on the way to the bathroom, I saw other people fighting cancer alone. They were lying in bed, motionless, watching television or staring in space. Their only stimulation was a nurse checking in for a minute or two on the hour. I knew this was not right. It upset me.

So, my vow was to start helping my fellow fighters in the simplest way that I could. I walked into the other rooms, one at a time, and introduced myself. “Hey, what’s up, I’m Jonny. What’s your name?” Although they were exhausted just like me, everyone was friendly and welcomed my conversation. We shared stories, emotions, and different opinions about many things in life. Our common bond? We were all fighting for life.

Although I had my network of support in my family, friends and doctors, once I started introducing myself to these fellow fighters I realized that they were providing me something valuable that my caregivers could not. From deep discussions about the fears with fertility issues, to simply learning that sucking on Lemonheads candies alleviates the metallic taste from chemo, talking to others who also faced cancer was a powerful, insightful and uplifting tool.

I wondered: “What if every cancer fighter could talk to a cancer survivor who was uniquely familiar with their experience; who not only had beaten the same type and stage of cancer, but who also was the same age and gender as the fighter?” The cancer survivor would be an angelwalking, living proof that the fighter could win, too. What an amazing connection. This is why I created Imerman Angels.

What does Imerman Angels do?

Imerman Angels carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience.

The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world. Imerman Angels is a federally registered 501(c)(3) not-for-profit organization.

Visit www.ImermanAngels.org for information on how to support or join the network of cancer fighters, survivors and caregivers.

Today, we have the largest network of cancer survivors in the world; more than 4,000 cancer survivors and over 1,500 caregivers. They live in all 50 states, and over 60 countries.

We help thousands of families with cancer, across the world, every year.

1-on-1 cancer support works for one reason: we all BELIEVE.

Jonny Imerman, founder of Imerman Angels

No one should fight this disease alone. 

The author, Jonny Imerman is a young adult cancer survivor who strives to make sure no one fights cancer without the support of someone who has already triumphed over the disease.  After being diagnosed with testicular cancer at the age of 26, Jonny decided to found Imerman Angels, a non-profit organization, which carefully matches a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Imerman Angels now has more than 4,000 cancer survivors and more than 1,500 caregivers in its network, and has been featured by dozens of news organizations including The Wall Street Journal, Harpo Radio’s “Oprah and Friends” with Dr. Oz, Men’s Health, NBC5 Chicago, CBS2 Chicago, ABC7 Chicago, ESPN Radio Chicago, Chicago Tribune, Chicago Sun-Times, Detroit Free Press, LIVESTRONG Quarterly, and Clinical Journal of Oncology Nursing.  Jonny received a 2012 CNN Hero Award; 2012 Lincoln Park Young Professionals ‘Chicago Best of The Best’ Award; 2011 Twilight Foundation Detroit’s Civic Leadership Award; 2011 Chicago Social Magazine’s ‘Who is Chicago’ Award; 2010 Jefferson Award for Public Service; 2010 University of Michigan Humanitarian Service Award; 2009 Ulman Cancer Fund For Young Adults ‘Hope Award’; and 2007 Daily Candy ‘Sweetest Thing’ Award.  Jonny has been invited to speak at cancer centers such as MD Anderson, Memorial Sloan-Kettering, Mayo Clinic, Dana-Farber, City of Hope, Northwestern, Rush, and Children’s Hospital Los Angeles.  Jonny grew up in Bloomfield Hills, MI and lives in Chicago.
Visit Imerman Angels at: www.ImermanAngels.org
Follow Imerman Angels on twitter: @ImermanAngels

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. Past Resource Roundup stars have included Creating the 10 to Thrive eBook, Annie Appleseed Project and Caring Bridge, among others. To view products that can help alleviate the unpleasant and uncomfortable side effects of chemotherapy and radiation please visit www.LotsToLiveFor.com.
Lots To Live For, Inc. ~ Comfort, Hope, Inspiration

Help to spread the word about Imerman Angels by winning a free T shirt like Jonny is wearing above - visit www.facebook.com/LotsToLiveFor and "like" the both the page, and the link for this blog post to be entered in a raffle. The contest will end on 1/22/13 and the winner will be announced on 1/23.

Cancer Survivors Who Beat the Odds – Attributes of Survivors Who Became Thrivers

by Tami Boehmer, Guest Blogger
Learn how to win a copy of Tami's book at the end of this blog post.

I was first diagnosed with breast cancer at age 39 in 2002 after finding a lump during a breast self-exam. There was no history of breast cancer in my family, so I was shocked, to say the least. Two weeks later my father died. My daughter was three, and my husband and I had been married less than five years. It was a devastating time, but I was heartened when my doctor told me I had no lymph node involvement and my prognosis was excellent.

After five years, chances are slim cancer will return. But again, I learned you can’t pay attention to statistics. In February 2008, I found a lump in my armpit, and after a series of scans, I learned it had returned as stage IV cancer. I went to a world-renowned cancer hospital only to be told I would certainly die from breast cancer. Luckily I turned it into a challenge to prove the doctor wrong.

I spent my career in healthcare public relations, and always loved writing patient success stories. I already knew my friend Buzz Sheffield, who was told five years earlier he had months to live. (Today, eight years later, he is alive and well.) I also read Bernie Siegel’s wonderful book, Love, Medicine and Miracles, which talked about Exceptional Cancer Patients and how the worst thing doctors can do is to give death sentences.

So I started my search for more incredible people who beat the odds of terminal cancer for my book, From Incurable to Incredible. I was searching for answers. It was an extremely personal journey. As someone facing a Stage IV breast cancer diagnosis, you could say my life depended on it.

My biggest question was: What sets people apart who beat the odds of a terminal or incurable prognosis? As I was putting the 27 stories together, I noticed many similarities among survivors nationwide who shared their stories. Rather than passively accepting their circumstances; they decided to transform them by:

• Refusing to buy into statistics and the death sentences many of them were given.

• Never giving up, no matter what. They may have had down times, but were able to pull themselves together and do what they needed to do.

• Relying on support from family, loved ones, or support groups. These connections gave them a reason to carry on.

• Choosing to look on the bright side and see the gifts cancer brings.

• Giving back and making a difference in other people’s lives, whether it was fundraising, lobbying, or supporting other survivors.

• Having a strong sense of faith. Even if they didn’t believe in God, they believed in something larger than themselves.

• Being proactive participants in their health care.

• Viewing their lives as transformed by their experience.

I continue to share stories of amazing cancer survivors on my blog, www.MiracleSurvivors.com, and continue to see these common threads. But I’ve found there are people in the cancer community who are offended by these observations. “Are you saying that people who didn’t make it weren’t positive enough?” Absolutely not! Cancer is complex, and I do know people who possess all of these qualities and still succumb to this awful disease … two of them whose stories are in my book. There are no absolutes or guarantees. In the midst of dismal statistics for people with late stage cancer, my purpose is to help show there are possibilities. There is always hope, and there are ways to live life to the fullest … with purpose and joy. As Deb Violette, a lung cancer survivor and advocate featured in my book shared, “This little voice in my head said, 'Why are you focusing on the 90 percent of people who didn’t make it; why don’t you focus on the 10 percent who do?'" She was diagnosed in 1998 and is very alive and well today.

No one should put a period where there should be a question mark.

Tami Boehmer is a speaker and an award-winning blogger and author. From Incurable to Incredible is available on Amazon.com and BarnesandNoble.com and via Tami’s blog, www.MiracleSurvivors.com.

If you are interested in reading the inspirational true health stories of cancer survivors who beat the odds, you can purchase the book from Amazon by clicking in the box below. Win a FREE copy of the book by visiting the Lots To Live For, Inc. facebook page by 10/7/12 by clicking here.


www.facebook.com/LotsToLiveFor  - To enter the raffle to win a free book "like" the page and "like" the blog post. Comment if you feel inspired.

To learn about and purchase products that can help reduce and relive the unpleasant and uncomfortable side effects of chemotherapy and radiation visit www.LotsToLiveFor.com. You will find solutions for: radiation burns, radiation dermatitis, dry mouth, mouth sores, nausea, sensitive and compromised skin, hair loss, and more.