Contact us by Email: nfinn@comcast.net

How e-Patients Should Navigate the System to Get the Best Possible Treatment for Breast Cancer

I was recently diagnosed with breast cancer for the second time and exactly five years to the day after my first occurrence.  Although I do not usually discuss personal issues on this blog, I hope my experiences and approach might help others as they navigate the health care system to get the treatment needed.

 

Both incidences of  cancer for me were detected very early and  were small tumors .  Additionally, these cancers were separate incidences, not a cancer that had metastasized.  Since I have written the book on patient empowerment, engagement and education, I can say with confidence that if you approach this diagnosis well informed, suitably engaged, and with a positive attitude, you will  make better decisions that will result in a better outcome.  So here’s what I have to offer by way of advice and information:

 

First rule of thumb for every woman, particularly those over the age of 40, or those with a history of cancer in the family, is be diligent about self-examination and get an ANNUAL mammogram. A mammogram is an x-ray of the breast. Modern medicine has been doing mammograms for 43 years.The machines are designed to use very low levels of radiation.  Strict guidelines insure that mammogram equipment is safe so that the level of radiation does not increase the risk for breast cancer.   To put it in perspective, if a woman with breast cancer undergoes radiation therapy, she will receive a total of approximately 5,000 rads.  If that same individual  has yearly mammograms beginning at age 40 and until she is 90, her total radiation exposure will be between 20-40 rads. The American Cancer Society recommends that women age 40 and over should have a screening mammogram every year and should continue to do so for as long as they are in good health. Today’s digital mammogram machines  detect most abnormalities in the breast so be certain to have your mammogram at a facility that has digital capability.

 

http://www.cancer.org/acs/groups/cid/documents/webcontent/003090-pdf.pdf

 

The American Cancer Society  also recommends that women in their 20s and 30s should have a clinical breast exam as part of a periodic health exam by a health professional at least once every three years.The goal of these screening exams is to find cancers when they are small, still confined to the breast,  and before they start to cause symptoms. Breast cancers that you find yourself tend to be larger and are more likely to have  spread. This has a lot to do with your  prognosis and  is why breast self-examination, (BSE), starting around age 20 is so important.   ( http://www.cancer.org/)

 

Web sites where you can get excellent instruction on how to do a breast self exam include

 

http://www.breastcancer.org/symptoms/testing/types/self_exam/

 

http://www.nationalbreastcancer.org/about-breast-cancer/breast-self-exam.aspx

 

http://www.youtube.com/watch?v=Ple5EJHmwqM

 

If you are called back for a second set of mammograms, as I was, do not panic and do not procrastinate. It is very important to follow through.At my  call back for this occurrence I was sent immediately to ultrasound and the radiologist located a small but definitive tumor pretty quickly. By then I kind of knew what was ahead.

 

Two days later I had a biopsy that confirmed, a small cancerous tumor called a lobular carcinoma.  This was a different type of cancer than the  first round which was a ductal carcinoma in situ (DCIS).  I learned from asking the doctors that both of these cancers  types are estrogen positive and respond well to treatment.

 

Never quite satisfied that I had all of the information I needed, I did a lot of Internet research, talked with my primary care physicians and other individuals who were knowledgeable about breast cancer to find out as much as possible about what I had and what I was facing.

 

Armed with all the necessary information, I met with my oncology surgeon.  Lucky for me she is the same physician whotreated my first cancer. She is a doctor who knows just how to  communicate with her patients and explain everything that is happening in great detail and with great reassurance. As a result I did not need to seek second opinions or look for a doctor who might be the best surgeon for me.

 

If you do not have that health care team in place that you have complete confidence in, however, then you should do some research to determine who to seek for a second opinion.  The best way to find information on doctors is via other professionals, including the opinions of your primary care physician or from your friends and relatives. There are also web sites where you can find extensive information and ratings on doctors and hospitals.  Among the questions you want to consider are:  how often do they do this type of surgery,  and what is their quality and safety record,

 

http://doctor.webmd.com/physician_finder/results.aspx?

 

http://www.healthgrades.com/

 

I had my surgery, a lumpectomy with a sentinel node biopsy and am now recovering from that.  In a few weeks, I will meet with my full team: oncologist, oncology surgeon and radiation oncologist and determine next steps which might include medication and radiation.

 

Although cancer is a common problem, particularly for people over the age of 40, when it happens to you it is frightening.  You could become depressed, angry,and sad. However, if you remain positive, approach your diagnosis with a fighting attitude,  and  find a team of physicians that you have confidence in, you will be so much better off.

One thought on "How e-Patients Should Navigate the System to Get the Best Possible Treatment for Breast Cancer"

Ileana Balcu says:

Hi Nancy,

Thank you so much for sharing your story on your blog. I hope you are holding on well to the treatment without many side effects. I wish you well!
Ileana

Leave a Reply

Your email address will not be published.