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April 7, 2012
1 person found this review helpful

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Review from CharityNavigator
April 7, 2012
1 person found this review helpful

I am both an RN and a survivor. I use Living Beyond Breast Cancer both to support myself and my clients. They provide a wonderful resource. I only wish I had found their website when I was diagnosed in 2004, instead of a couple of years later. They produce both an exceptional website and handouts that are superb.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 29, 2011

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June 29, 2011

I have stage iv breast cancer and really appreciate the information that LBBC provides. It is wide ranging, thoughtful and comes with a lot of heart.

The Great!

I've personally experienced the results of this organization in...

my life.

Ways to make it better...

If I had to make changes to this organization, I would...

have them expand to hold more events beyond PA.

June 21, 2011

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June 21, 2011

I have used the info from LLBC so many times! I download the teleconferences for education, enjoy the newsletter, and I actually got to go to the Conference for Young Survivors last year thanks to LLBC and a travel grant. I learned so much at that conference and was able to pass on treatment changing, and life saving info to the other girls when I got home. I am still talking about all I learned at that conference a year and a half later! I use the LLBC online community as well. The Advanced Breast Cancer Support Community also has given me so much information and support. I don't think I would have been able to manage my journey so well or with so much positive energy without the posts of those women. I think LLBC is THE most helpful organization there is for breast cancer survivors.

The Great!

I've personally experienced the results of this organization in...

The Conference for Young Women Affected by Breast Cancer The online Community The online teleconferences and podcasts written material on website

Ways to make it better...

If I had to make changes to this organization, I would...

nothing comes to mind....

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

A friend from support group/fellow survivor

What, if any, change in your life has this group encouraged?

wider circle of support, education

When was your last experience with this nonprofit?

2011

June 21, 2011

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June 21, 2011

Excellent organization, the go-to place for information on breast cancer, plus guides to other forms of cancer too. Their teleconferences have been very helpful to me. None of my doctors took much time with me, or they didnt have many answers.

The Great!

I've personally experienced the results of this organization in...

Designing a followup care plan. Also, I attended an excellent conference w/Dr. Susan Love.

Ways to make it better...

If I had to make changes to this organization, I would...

I've already told them their teleconferences should be modeled more on the cancercare.org ones so peopledont spend a lot of time discussing their specific problems. IE, prompt them to ask the question if they get off track.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

I really dont remember!

What, if any, change in your life has this group encouraged?

More personal involvement in my healthcare.

When was your last experience with this nonprofit?

2011

June 21, 2011

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June 21, 2011

Being diagnosed with Breast and Bone Cancer is really scary. During the year of my metastic diagnosis, i knew noone else like me. Through the metastic conference calls that the LBBC provided, I found that I was not alone. Through these calls I learned of new coping strategies, treatments options and a whole lotta hope was provided.

I often refer other survivors to the LBBC volunteers. They seem to match up well and can always find someone close to another's situation.

The summary of the ASCO findings are put in 'laymans' terms. These new therapies are instrumental in the survivorship of many. LBBC does a great job at getting the word out from successful trials. I fully support this wonderful organization.

The Great!

I've personally experienced the results of this organization in...

See above

Ways to make it better...

If I had to make changes to this organization, I would...

I love it the way it is. One phone call and a world of knowledge support and understanding. Thank you sisters!

June 21, 2011

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June 21, 2011

My main connection with Living Beyond Breast Cancer is through their helpful, up-to-date, thorough, yet understandable brochures and their website.

I found Living Beyond Breast Cancer online when I was diagnosed with breast cancer in 2003 and found the information invaluable when I was
making treatment decisions.

Since 2005 I have been a volunteer for other cancer-related organizations and frequently refer clients to LBBC's website. I use their brochures and newsletter as references when counseling women with breast cancer and I share their brochures with others. The booklets are SO helpful, especially the one about metastatic disease, fear of recurrence, bone health and hormonal therapy.

The Great!

I've personally experienced the results of this organization in...

I've personally experienced the results of this organization in the current and understandable information they have available through their website and informational brochures on various breast cancer related topics. I've also been able to be a patient consultant on some of their brochures.

Ways to make it better...

If I had to make changes to this organization, I would...

not make changes... I think they are doing an excellent job as is.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

online through a search engine

What, if any, change in your life has this group encouraged?

LBBC has encouraged me to live well as a person who's had cancer.

When was your last experience with this nonprofit?

2011

July 30, 2009

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July 30, 2009

I am 54 and a 3 year survivor. I connected with LBBC when I was first diagnosed and I still find them to be a great support and a fountain of valuable information. The website provides the latest in breast cancer news, current medical research reported from the annual meetings of the American Society of Clinical Oncology, as well as forums for women to connect with others who are in a similar situation - i.e. newly diagnosed, living with metastatic disease, women of color, etc. My favorite LBBC feature is the monthly teleconferences when a doctor or doctors discuss a particular topic (the topic for this month is hormonal therapy). The doctors provide up-to-date information in easy-to-understand language for the lay person. The listening audience then has the opportunity to ask the doctor questions - no other forum provides this unique service! If you miss the teleconference, replays and downloads are available on the website. LBBC is one of the best organizations for reliable information and support for breast cancer patients and survivors.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the monthly teleconference discussions on various topics with expert doctors.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

When I was diagnosed with metastatic breast cancer three years ago, it was very hard to find any information on advanced breast cancer. LBBC is a valuable resource for anyone with breast cancer but especially for those of us with advanced breast cancer. LBBC always have informative speakers for their teleconferences, their website is very "user friendly" and their newsletters are great. They cover the entire spectrum of topics not just about the disease itself, but on topics like family and the workplace. They are a lifeline for anyone looking for the most current and reliable information.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

that it has given me confidence in living with advanced breast cancer. I have more knowledge about the disease and current treatments and feel that I can become more active as an advocate for patients living with advanced cancer.

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

I look forward to getting regular emails from LBBC. There is always information that I have been wondering about or worrying over and LBBC provides just the right answers for me. Keep up the great work!

The Great!

I've personally experienced the results of this organization in...

improving the lives of survivors - both newly diagnosed and beyond.

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the regular emails which include experts in the field.

The kinds of staff and volunteers that I met were...

excellent

Ways to make it better...

i wish i lived closer to philly

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I love Living Beyond Breast Cancer. They have informative teleconferences on various topics addressing issues concerning breast cancer survivors. They include the newest therapies, returning to work issues, how to cope with side effects, etc. They also send free bochures on topics including lymphodema, understanding pathology reports, etc. It is a valuable resource for anyone just being diagnosed with or surviving breast cancer.

The Great!

I've personally experienced the results of this organization in...

mostly in my peace of mind; knowing and seeing how much research is being done to fight bresat cancer and to help survivors cope with life after diagnosis.

Ways to make it better...

If I had to make changes to this organization, I would...

Hold more events around the country.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Information is sent right to my computer and I can listen to the professional teleconferences in the comfort of my home, or get the transcripts to read later. It keeps me very informed.

The kinds of staff and volunteers that I met were...

Haven't met any. All exposure is via computer.

If this organization had 10 million bucks, it could...

Reach more people.

Ways to make it better...

Knew about it at the time of my diagnosis.

In my opinion, the biggest challenges facing this organization are...

Don't know, but like most non-profits, it's probably financial.

One thing I'd also say is that...

I was so proud to see my Radiation Oncologit's name as an Advisory Committee Reviewer. If she attached her name to this organization, I know it's top notch.

When was your last experience with this nonprofit?

2009

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