Category Archives: Patient Advocacy

SHARE Cancer Support – Breast Cancer Organizations, Helplines, Hotlines and Support

New Guest Blog from …SHARE CANCER SUPPORT.  SHARE Cancer Support offers support to women who are survivors or victims of breast cancer or ovarian cancer. SHARE’s mission is similar to LIVEURBESTLIFE in that we strive to offer support to those undergoing cancer treatment or cancer survivors, as well as advocating for good, healthy habits in general. Below you will find information regarding Breast Cancer Organizations, Helplines, Hotlines and Support.

Thank you SHARE Cancer Support for participating in this collaborative effort to better help facilitate support for those in need.


Breast Cancer Organizations, Helplines, Hotlines and Support


If you have been diagnosed with breast cancer, you may need someone to talk to. Although you may have the support of family and friends who can help you face this condition, sometimes it’s nice to speak to someone completely different – including those who have been through what you are currently experiencing. There are a number of breast cancer organizations and charities that can provide you with the assistance you need, and can book you a place on a support group, where you will be able to meet other people who are being treated for breast cancer, along with those who are survivors.


Getting Involved with Breast Cancer Support

The National Breast Cancer Foundation is an organization that specializes in assistance for those who have been diagnosed with this condition. The charity was set up in 1991 by a breast cancer survivor, and today provides a number of resources about the disease, as well as information about fund-raising opportunities. The Breast Cancer Fund specializes in prevention, as well as exposing the risks associated with breast cancer. The website features online seminars, image galleries, resources about the condition, as well as information on how to donate.

SHARE also provides information and support. With SHARE you can learn to become an advocate, volunteering your time, passion and support to those who need you. Learn about special events, volunteering, donating and more with SHARE.

Breast Cancer Helplines

The American Cancer Society also provides a number of resources on their website, as well as a cancer hotline that is open 24 hours a day. You will be able to speak to a company representative if you need some more information about coping with cancer, different treatments that might be available to you, screening information, the importance of prevention, pain control and side effects. SHARE, a cancer charity that provides support for women suffering from ovarian or breast cancer, operates cancer helplines specific to breast cancer and ovarian cancer staffed by survivors of these diseases. SHARE is on Facebook, Twitter, LinkedIn, and Pinterest as well, where there is always a group of friends available to get support from and get involved with.

Support Groups

A support group like SHARE for people who have been diagnosed with breast cancer can be a great way to meet new people and make some new friends as you learn to cope. You will be able to find out more information about the conditions, and meet those who have faced breast cancer and ovarian cancer in the past. You’ll depend on the support of those women who are currently experiencing the same things you are, and they will depend on you too!


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To Boob Or Not To Boob

Many women are confused with the recent changes regarding age recommendations for mammograms. The guidelines have changed with frequency over the years.  Because there is a wealth of information generated through studies and how it is disseminated to the public, it can sometimes be hard to keep up with the latest research and assess where you fall into the mix of things.

When I went to my first social function after being diagnosed with breast cancer, I was amazed at the wide array of information that was floating around the room.  Of course, everyone wanted to know my story. How did you figure it out, what were your symptoms, what’s your family history, had you ever had a mammogram before?  Their responses ended up being just as thought provoking as my answers.

As I began to share my story, I can see the overwhelming wave of confusion settle over my peers’ faces…the mean age in the room was the same as mine.  I had discovered my cancer through my first mammogram at age 38.  After having a mastitis, my doctor recommended a mammogram and ultrasound to make sure there wasn’t anymore underlying infection in my breast.  It would be a good opportunity for a baseline too.  I remember thinking, “If it was relevant to get a baseline in the first place, why wasn’t it mentioned when I was 35”?

Leaving the doctor’s office, I began to remember the time when I was breast-feeding at age 35 and recalling the thought to get a baseline mammogram once the baby was weaned.  Hearing all the past horror stories involving women’s experiences with mammograms, I was not too eager to bring the subject up.  My doctor didn’t bring it up either.  But here I am 3 years later, getting a baseline mammogram anyway.

As I began to recount my story, the first woman chimes in “My doctor doesn’t believe in baseline mammograms, it leads to too many false positives”.  Another mentions that her OB/GYN recommends baseline mammograms at 35 but a lot of times insurance companies won’t cover it.  In the midst of the confusion, a third one says that she thought mammograms weren’t recommended until you were 40 years of age.  “That’s if there isn’t any prior family history, another responds.  If you have family history, you start having mammograms at an earlier age-even 30 years old”.

I was struck by how different and far apart everyone’s information gathering had taken them.  These were all well educated, intelligent, Google-savvy women.  Where does the breakdown in communication lie? If cancer doctors and organizations can’t even agree on what is the right age for a woman’s first mammogram, how could my peers know?

While the American Cancer Society and other cancer organizations still recommend mammograms yearly after the age of 40, the U.S. Preventative Services Task Force states that with no prior history, women do not have to start having mammograms until the age of 50 and to repeat the test every two years thereafter.  Studies show that despite more women being diagnosed with early stage breast cancer due to earlier screenings, the number of advanced breast cancer cases has not decreased. Advocates of the Task Force’s recommendations also claim that the risk of women between the ages of 40-50 is so small that it doesn’t warrant the exposure to the radiation.

Unfortunately, I am one of those women who while diagnosed at a young age, had no notable family history at the time of diagnosis and had a very run-of-the-mill type cancer.  The woman that you don’t hear too much about due to the overshadowing of young women who have more aggressive cancer that can sometimes be attributed to genetics and do have familial history of the disease.  Those women who are aware of the risk even at young age and know they should be getting mammograms earlier rather than later.

Aside from my diagnosis, I also know several women between the age of 40-50 who all had no family history and non-aggressive breast cancer.  If I know this many people already, how many other women are out there who fit this same profile? Women who will wait 10 years to get their first mammograms, many who will be perfectly fine, but some who will not.

There is so much miscommunication on the pro’s and cons of mammograms.  I would employ anyone who is concerned about waiting longer to get a mammogram to have a dialogue with your doctor.  There may be options and information that you are not aware of that may consequently lead to better decision-making regarding your age appropriate imaging needs.

The Importance of Patient Advocacy

Never in a million years did I think I would be diagnosed with early stage breast cancer at 38 years of age.  5% of women account for all breast cancer under the age of 40.  My radiologist told me, with no prior family history, that I was simply “a fluke”.  What a benign choice of words for such a potentially dangerous diagnosis. Still, I struggled from the beginning to gather the information that I needed so that I could make the most informed decisions about my health.  Without having any prior knowledge about breast cancer, this was no easy task.

Delving into the world of cancer is quite an undertaking.  Immersing yourself in a new language of medical jargon that seemingly only a person wearing a white coat can fully understand. You wait for hours on end just to talk to the experts in the field while clinging to promises of a better future. Only to go home at the end of the day and find the simple juggling acts of everyday life awaiting you- kids, work, grocery shopping… the list goes on.  No wonder it is overwhelming!

 I picked one of the best hospitals in the country, looking forward to the endless supply of information waiting for me on the other side of the door.  Having a Master’s in Psychological Services my expectations were high, and I was interested to see how they approached such a delicate subject.  I expected to find an outpouring of support and helping hands but instead was left with more questions leaving than I had coming in with earlier that day.   Even my husband’s eyes were glazing over! 

Slowly along the way, I realized that no matter how promising the hospital, you still need to be a strong patient advocate, arming yourself with questions, alternatives and opinions on how this is going to affect you- the patient.  Doctors don’t always want to be questioned on their decisions or recommendations but it is your right as the patient for this type of exchange of information.  In practicing what I preach, I found myself unveiling better options for myself; ones that the doctor’s never even recommended or mentioned.  If I had not been my own advocate, my story would have taken a very different turn (more on that in another post).

The words, “You have cancer” are never something anyone wants to hear.  But once the initial shock sets in, it is important to educate yourself on how this is going to affect your life-physically, emotionally, socially and so on.  Ultimately, educating yourself on the impact of these issues will help prepare you in making the most appropriate and well-informed decisions for you and your health.   

 I have always said that this is both a medical process and an emotional journey.  I hope that my webpage will provide some information, support and guidance to those that need it.  Knowledge is power and power is knowledge. When we know better we do better. 

Let’s do it.

Coping with cancer… LEARN and live your best life…

L       Listen To Your Body—  Always be intuned to your body.  If I had a penny for every time I have heard a person say that their “inner voice” was tugging at their shirtsleeve or they just had a weird feeling about something, I would be one rich person.  If it just doesn’t sit right with you, get it checked out.

E     Educate YourselfKnowledge is power.  The more information you have on what your diagnosis is the better decisions you can make in terms of treatment plans, preparing your family and making work decisions, just to name a few.  It may seem overwhelming at first, but it will make things much more manageable in the long run.

A     Act ResponsiblyGetting a cancer diagnosis may make you want to run for the hills. But it is important to put into perspective how this all intertwines within your life.  Think about what you can do to reach the best possible outcome for you and your family and loved ones.  As much as cancer physically hurts the patient herself, it really isn’t just about the patient but the network which surrounds her too.  Make family- centered responsible decisions which encompass the best interests of everyone walking on this journey with you.

R    Reach OutCancer can throw you some curveballs.  You don’t need to do this alone.  There are many support groups that can help you find other people who are going through similar situations as you.  Family and friends are also a strong support in time of need.  It will benefit you to tap into these resources as you muddle your way through this process.  Don’t feel guilty asking for help. People embrace such opportunities to lend a helping hand as it gives them some comfort in being able to do something to show they care during this time of need.

N    Never Give Up HopeThere are times when you just don’t know if you can make it one more day.  Never give up hope that a better future is around the corner waiting for you.  Research is always coming up with new drugs, different surgical procedures and innovative approaches on how to tackle this disease.  Try and stay strong and positive as studies show that this leads to better outcomes in patients. 

LEARN…kept me sane as I made my way through this journey called life and my detour known as breast cancer.  I hope that it will help make a little better sense of yours too. Learn and live your best life…