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: Karen Pennington
November 11, 2009

My oncologist and radiologist were both wonderful! Their nurses, along with the doctors, both kept me (and my mother, who was and is still my best advocate) fully informed about treatments and side effects. I do think it would have helped to have more in writing, although the oncologist actually gave me a calendar each visit with pertinent information on each one. I was in such a fog that I really don't remember much about my chemo and radiation days, except for the multiple hospitalizations from side effects. I am still in the works of getting all of my medical records from all of the doctors and hospitals so that I can better understand exactly what transpired during those hazy days. I also think a written plan might have helped me understand what I am trying to find answers to now concerning after-treatment and what to expect...those things that are normal and to be expected and those that need immediate attention and which doctor to call for what problem. I am glad to be cancer-free now since July 10th and now am working on figuring out what my life has to hold for me now.

 

Submitted by: Carol Overdorf
November 10, 2009

I believe my Healthcare team did a great job, but as within any system and especially the cancercare, there are many gaps and short comings. I don't fault the Doctor's/Practitioners for this because I really believe they take on much more than we even realize. It's just the way the system is and of course as systems go, they're faulty. As much as I had questions and took my little tape player to all my appointments (strongly recommend doing that!) so I wouldn't miss anything the Doc. said, there is so much information to take in and so many decisions to make. It is beyond overwhelming. There are support groups that can be helpful but what I'd like to see is a staff of trained advocates/mentors to "walk-along side" of each Breast Cancer patient from Intial Diagnosis to Treatment and be there for her in all those lonely, confusing times that most people don't see. Even if your married, sometimes it is difficult to deal with these issues and perhaps you'd just like your advocate to go with you to an appointment. I've been able to be-friend a young single Mom who has been diagnosed with BRACA1 but doesn't have cancer yet and is making some really tough decisions. Because I have gone through some of the same issues I've been able to help her when others just couldn't relate. That is what Mentoring is about........being able to relate to another individual who has already been in that same situation. But it takes training and time and of course that involves willingness and money. I would love to see some kind of Mentorship program that supported Breast Cancer Survivors!

 

Submitted by: jim
November 7, 2009

i was caregiver to my brother he had colon cancer. i survived the same colon cancer. i was care giver to my mother who recently died of colon cancer. my question is has anyone else out there done anything like this?

 

Submitted by: Alex
November 2, 2009

Hello, I was diagnosed at the age of 24 with stage 2 cervical cancer. I had a tumor that was inoperable and it had spread to 2 lymph nodes. I have just recently completed my chemotherapy as well as radiation. I can say having both treatments it was rough, my team of doctors and nurses were amazing at giving me information on how treatment would go. I find that nurses are much more honest about how severe or minimal the pain will be, and do not hesitate to ask questions as they usually know tricks to help with differnt pains that occur. I will also say that chemo has an effect on taste, it seems to differ from person to person but for me it was a loss of taste almost. When I was able to eat everything tasted extremly blanned and always needed more seasoning. I found one thing that was great to eat was pickles. Besides chemo altering your taste it also may give you what my nurse called chemobrain, which is kinda like growing old, I just find myself forgetting things. Constipation is a definete when it comes to chemo, so make sure to keep laxatives on hand. As my week started with chemo monday mornings and radiation monday-friday afternoons. The worst effects of radiation was diarrea at the end of the week, as well as my skin being irritated. As my radiation was directed to my pelvic area peeing became extremly painfull and much more frequent. some days walking was even painful. I always felt open to talk to my team of nurses and doctors about any of the side effects and they were always willing to help me find something to cure or make the pain bearable. I then checked into the hospital for internal radiation or brachytherapy. With this I was in the hospital for 3 days with radiation insterted into rods in my cervix, I was unable to move at all or eat for the length of the three days. This is not painful from the radiation, more just from not moving. I was aware of all my treatment and the next step of the doctors at all times, and found this to be both reassuring on days and other days overwhelming knowing what I was waiting for next. Making sure to find a doctor you can talk to about all treatment options, how to pay for treatment, emotions, etc is one of the most important steps and will only help you getting through something so difficult.

 

Submitted by: Frannie
August 16, 2009

I was diagnosed with breast cancer three years ago in May. I am still here. That's the good news. I had three small tumors on the right and one insitu on the left. I had a bilateral mastectomy, reconstruction and have been living my life. I live in Hawaii, but my oncologist is in California so I make the trip each year. I feel great most of the time, try to stay active, but I still worry. I have tests every year which she (oncologist) orders. I hear that a Pet Scan is the best way to detect cancer in the body. Should I be having one of those? My mom died from breast cancer. Her's was in a much more advanced stage, but the heritary factor seems to be strong even though I have never had the test to determine that. I would just like to know what to do. Is my doctor doing enough or should I have tests other that the ones I have been given. It's the not knowing and everyone having an opinion and a different experience that tends to make me anxious. If anyone knows any course of action that might make me feel more at ease, I would appreciate it. I forgot to mention that I have been taking Arimidex since I finished chemo. I have put up with it and all of its uncomfortable side effects because I feel confident from reading about it, that it may be the only half baked insurance policy we get. I don't dwell on this, but ever since I heard about the Pet Scan it has been on my radar as something I should have. Any experiences with it? Thanks.

 

Submitted by: Rosemary
June 21, 2009

Need help with bills, food, ect.

 

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.

SURVIVOR PROFILES

Marian Malloy Blackman, 13-year breast cancer survivor

"This treatment summary and plan is concise and easy. It’s like having someone go through my medical record and extract all the most pertinent information and translate it into an easily readable packet."
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