Surviving with Confidence


Based on the results of a new national survey showing that most cancer survivors had feared undergoing chemotherapy before starting treatment, the National Coalition for Cancer Survivorship and sanofi-aventis have launched a new program, Surviving with Confidence. By sharing the experiences of survivors who have undergone chemotherapy treatment, the program aims to help dispel many common misconceptions about chemotherapy and to empower cancer survivors to be their own advocates and seek the highest quality care. Surviving with Confidence celebrates the strides in cancer treatment that are helping to extending survival and encourages people living with cancer to gather as much information as possible regarding their treatment options before making decisions.    Read more about the national survey results >>

A centerpiece of the campaign is an inspirational video featuring respected broadcast journalist and cancer survivor Linda Ellerbee, along with other cancer survivors sharing their experiences during treatment and in the months and years beyond.  View the video >>

An important theme of Surviving with Confidence is to be your own advocate – to arm yourself with information, speak up, ask questions and participate in your treatment decisions and care.   The survey showed that understanding the benefits/risks of all treatment options and what to expect greatly helps allay fears so people can make decisions based on facts rather than emotions. Greater dialogue between people living with cancer and their healthcare professionals from the time of diagnosis throughout their survivorship will help survivors and their loved ones navigate treatment and inspire them to find ways to persevere.  Through programs like Surviving with Confidence, we can continue to advocate for survivors to openly communicate with their healthcare team, seek information and use that knowledge to go through their experience with cancer with greater confidence.

Leave a comment below and let us know how you communicated with your healthcare team about your treatment concerns.  Did your doctor give you a written treatment plan when you started and talk with you about what to expect?  Did you have to ask about side effects?  Do you think a written treatment plan would have made it easier for you to ask questions and talk with your healthcare team? 

 

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Submitted by: Jarnice Roach
May 29, 2009

I was diagnosed at 35 with breast cancer, I'm now 36 and have completed my chemo treatments since Sptember of 2008. I wasn't given a written plan but communication with my doctors were great! i had to make sure that i either took notes or had someone with me to do so! You have to be your own avocate! I also used the world wide web as a tool to gain knowledge about every aspect of what I had gone through and what was to come! I'm also egar to share what I know and help anyone who is in need! During my many surgeries and chemo, my husband lost his sister due to colon cancer, a few month's later his Mom was diagnosed with colon cancer and had the operation, a month later my husbands sister that we lost her daughter was diagnosed with colon cancer and had a operation, the son of the same sister had the same operation. The daughter is still going through treatment. My mother in-laws sisters all have the bag as a result of colon cancer. So as you can see being educated and learning as much as possible is very important for me and my family! I have three children, boys and a girl! I have to educate them! I'm very blessed and thankful to God for being here! Jarnice

 

Submitted by: maureen
May 29, 2009

i am an oncology nurse. when i was diagnosed last year, i had the knowledge to pick the md that i thought was the best for me. i am alone, with no family in southern florida. i am just know getting "scared" about my diagnosis. i do know the questions to ask. i have the knowledge to know what to expect, it is just scary to have this diagnosis and watch patients die from a form of the same disorder you have.

 

Submitted by: Bonnie
April 30, 2009

Jill Canepa, if you're still around and reading here, I'd sure love to be able to make some suggestions for directions you might pursue for the pain -- been there, done that, unfortunately! It's astounding sometimes how hard it is to find healthcare providers willing to take any responsibility for the lingering side effects of our cancer treatment. They "save our lives" and figure they can wash their hands of us. If you'd care to "talk" via email please contact me at support@stepup-speakout.org .

 

Submitted by: Michelle
April 26, 2009

My doctor provided me written treatment plan due to particpating in a clinical trial study for breast cancer. We discussed this in depth which really helped. The only negative experience I had was the doctor not validating my concern of weight gain with the steroid treatment. He would ask me what I was eating??? Are you kidding me. It made me crazy. After treatment ended, I lost the weight.

 

Submitted by: carol cray
April 21, 2009

my colon cancer was an emergency operation that they said I might not survive, then it was such a rush everything went in a blur. I guess i just went thru the motion through the chemo,learning to cope with my ilestomy bag. I do not think I thought I would survive so I asked very few questions, now the treatments are over and I am still alive. Now I have a ton of doubts and fears.

 

Submitted by: Shelly
April 21, 2009

I've just completed two years of treatment for stage 3 agressive breast cancer. While in treatment I felt we were doing something to fight this, but now I feel like I'm just left out to hang waiting for symptoms to appear. Very scary way to feel after going through so much. I would love to have some type of plan.

 

Submitted by: CYNTHIA SULLIVAN
April 6, 2009

I did not receive a written treatment plan and would have found it useful as it would have helped to ask about what was next and what to expect.

 

Submitted by: Anne Breen
April 4, 2009

I asked lots of questions and read lots of brain tumor literature from the national non-profit brain tumor organizations and spent lots of time online with other bt patients and attended brain tumor medical conferences after my recurrence. I wished I had been given a written treatment plan so I composed my own list of 28 questions to think about and ask medical team members and significant others that you can read at my blog http://gbyay.blogspot.com

 

Submitted by: Shalane
March 15, 2009

My adult daughter has AML and is trying to survive a MUD BMT rec'd in October 2008. Her team at UCSF pre-transplant was great about communicating, but insurance coverage would only cover BMT at City of Hope. Transplant team at City of Hope was AWESOME about treatment, facility is fantastic, staff are great, but communication is TERRIBLE. Dr. had not much to say. There was a written treatment plan, which was helpful, but not NEARLY enough info. on what to expect after the transplant. I know it is not an exact science, different bodies have different responses to chemo, radiation, BMT etc. But we weren't given any info. about the well-known after effects. I had to go hunt them down through Leukemia & Lymphoma Society and then share them with my daughter. She feared every ounce of fatigue, every sign of weakness as a return of the AML. Now we know that the BMT did not wipe out the leukemia, and have no idea what to expect next. Still no info from doctors. She was readmitted to her local hospital yesterday with fungal pneumonia and her PCP is basically telling her to prepare for death. NOW he wants to communicate!

 

Submitted by: waterfreak
February 10, 2009

PS your best friend is the internet. Free access to loads of medical journals and alternative opinions for viable cancer treatment outside of the medibusiness system.

 

Submitted by: waterfreak
February 10, 2009

i left the bag of cancer brochures in the closet in the office of the radiologist. I went to my local college, did research, and pretty much told my doctors what I wanted to do and not do. I wrote my own treatment plan which my oncologist, radiologist, and gp agreed with. Im not a doctor either, just someone who can and did think for themselves and did the research. I had a friend who needed Gemzar, (a chemotheraputic of which one of the side effects is DEATH.) Please do your research before deciding on any treatment plan. The fact that swayed me on saying no to chemo was a statistic from the Lancet(or maybe it was JAMA-I dont remember) that stated that a large portion of oncologists would would not recommend the standard course of chemo for their own family members. PLEASE DO YOUR RESEARCH!!

 

Submitted by: Mary
February 6, 2009

I like Robert was very lucky to have my Kidney cancer found before it had spread. After the surgery I also had a horrible experience with the treatment at the hospital and following up from home. I did not receive a written treatment plan, and do believe that it would have clarified many scary qustionable spots for myslef and my family.

 

Submitted by: Jill Canepa
February 5, 2009

I was diagnosed with breast cancer and underwent a lumpectomy and radiation treatment. I was left with intense nerve pain from the surgical procedure and still am suffering from the pain a year and a half later. I have received the worst possible care from all the doctors I have employed. Regarding the pain, the surgeon advised to see the oncologist, the oncologist said to see the surgeon, they both said to see a pain specialist. I saw pain specialists at both Stanford Pain Center and the UCSF Pain Center and after one unsuccessful epidural, neither will comment on a treatment plan. They all collect the money but I receive no support! There are also many other complications/side effects from the medications given to me for ongoing cancer treatment (weight gain, swelling, joint pain) which have not been addressed at all. I still am looking for help but do not know where to turn for answers. Are there any suggestions as to where I can receive proper care? I live in the Bay Area, California. All suggestions are welcome!

 

Submitted by: Claudia Makowski
February 5, 2009

My doctor sat with me and explained all options and treatment as if I was his only patient for the day. He even used diagrams and drew pictures of where my tumor was located and spoke with family members and answered all the questions that were asked of him. He continually supported me while I was going through treatment and told me on several occasions, if I ever needed him no matter the hour, just call and he would be by my side. I honestly have to say, I had the best experience while going through treatment with all my doctor's including my PCP. After reading and hearing about so many doctor's who just don't give a damn, I feel as though I'm very blessed and it saddens me to hear of others who haven't been so lucky with their team of doctors.

 

Submitted by: Lillie Ezell
January 19, 2009

Hello, my name is Lillie Ezell, the doctors have recently told me I have breast cancer and it have spread to my liver, and lung, and it is spreading and I have phemonia, congested heart failure and have sugar, high blood. they have told me my cancer is in stage 4 and they dont seems to have much hope the told me of a medicine the would be for pain however, they dont have any cure for me I ask them if the infection clear up what type of possiable cure they are telling me because of so many other thing wrong with me which I have mention they dont seems to see any hope. If you may know of any help please call me at 251 473-4906 251 327-6993- 251 473-2639 or email me at Aezell7777@netzero.com

 

Submitted by: deji
December 18, 2008

the doctor was very good sat down explained the options with their outcomes,treated me like i wa the only patient there that day. brought out pen and paper used diagram where necesary explained the chemo and gave me a booklet with information on every poible problem and the effects and ide effects. at chemo they would give us a lecture and pep talk. It wa really good

 

Submitted by: Jodie Hall
November 27, 2008

I feel that more of my treatment plan should have been presented to me on paper. I am a registered nurse (post MUD stem cell transplant for AML), and at the time did not know about "survivorship care plans". Now I am 5 years out, cured of my cancer but the likelihood I will get another cancer is very high. I was not given a specific care plan that included all of my treatments, chemotherapies and other medications. In all other respects, my communication with my providers was excellent. I was able to communicate effectively with my doctors and did not hesitate in asking questions. I was also provided printed materials on side effects of treatments and medications. I was otherwise well informed both verbally and with printed educational materials. I had a great team treating me!

 

Submitted by: Marcia
November 27, 2008

I simply feel grateful to still be alive.

 

Submitted by: Barb
November 1, 2008

I found it very helpful to always bring someone with yo, that person can be your extra set of ears. I would often be experiencing so much anxiety that I missed important parts or I held on to something my doctor said and didn't really hear anything else. Your "someone" can clarify and reexplain things to you. A written treatment plan maybe helpful for those needing something concrete and tangible but if your doctors spend enough time with you explaining and reexplaining, answering questions and provide after hours help numbers, I don't believe a written plan would be required. However, if you have a doctor short on time and does not take the time with you 1. request a written plan and maybe asked for another doctor if you are really concerned.

 

Submitted by: psalmsuthernbell
September 18, 2008

As a patient with Stage 4 breast cancer with mets, it is and has been very important that I understand everything that the Dr. is saying. Through my communication with the Dr. and by making notes on what was said, I then found every resource I could in order to understand what was going on. There was no communication about the side effects, except there will be side effects. I was still stunned and bewildered when I faced the first chemo. It was then that I was bombarded with what the meds were and the effects and affects that were to come. I did not know to ask the questions. A written treatment plan would have been ideal! Now, after 5 years, I have a list of questions to ask before a new chemo treatment is given. There is also time to research the drug and the side effects, etc. Since my cancer is chronic, it is very necessary to take charge and keep up with the new drugs and findings in cancer.

SURVIVOR PROFILES

Taylor Bell, lung cancer survivor

"My diagnosis came two weeks after my 21st birthday. So much for lung cancer being a smoker’s disease that older people get."
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