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Blog: Be an Informed Breast Cancer Patient

Advice during Breast Cancer Awareness Month for those who are newly diagnosed—be your own best advocate!

With all the hype this month about breast cancer awareness, I hope that it is also serving as a reminder to all you ladies to get your mammograms. Sadly, that means that some will be diagnosed with breast cancer. Today's blog won't apply to everyone, but I'm trying to write a variety, and this will apply to those who are newly diagnosed.

Sadly, in the past couple of weeks I've had two more friends who were diagnosed with breast cancer—a sisterhood I would rather not see growing. Wow, sometimes you wonder if there is there something in the drinking water! One friend is a former co-worker and we reminisced about how many of our former co-workers have since been diagnosed with some sort of cancer, most often breast cancer. Although, I guess if you looked at it statistically, we're about right since one in eight women today get breast cancer in their lifetime and breast cancer is the most common type of cancer among women. Did you know that this statistic is up from one in 22 in the 1940s?

After hearing of their new diagnoses, I had to think about how I would advise them to face this new challenge.

Get all the information you can. Some women just know that their doctor said they have cancer and now they have to take a blue pill. Get specifics. Get copies of all your scans and tests. Jot down your questions and bring them with you to your doctor's appointments. If you don't understand, ask again.  

Take a spouse or friend along with you to be your second set of ears—they may pick up information that you miss. Get a second opinion. Investigate the reputation of the doctors you are sent to and ask around if there are specific oncologists, surgeons, etc., that friends and family would personally recommend. If you have friends who are nurses, they can be a great source of information like this.

You may also want to do some online research and educate yourself so that you will better understand what the doctors tell you and also so you can ask informed questions. However, this isn't for everyone but I like to do this so that I am well-informed. As awesome as my doctors are, there are times when I feel they are not telling me everything, just to protect me, which isn't entirely a bad thing, but personally I want to know.

I do have to caution you, however—the internet can be a scary place. Not all of the information out there is accurate and not all of it will pertain to your specific case. There have been several times when I have scared the heck out of myself and my family with information I have found online. Make sure you only research on reliable websites, then ask your doctor about what you've read. A patient advocate once told me to only seek medical info on websites that end in ".edu," ".org" or ".gov."

You will need to be your own best advocate on this journey. There will be times when you will have to make choices about your treatment and when you may have to do battle with your insurance about what is best for you. Educate yourself, surround yourself with the best experts, as well as friends and family who can assist you with these matters.  Then, you can head into battle well-equipped with knowledge! Fight on, sisters!

Barbara Krause October 26, 2012 at 10:42 am
Well written with very good advice.
Ali October 27, 2012 at 09:15 pm
I think this article says absolutely nothing. And I currently have breast cancer. In today's insurance universe, many of us have no choice in what doctors we go to (hmo's). I am in that position. I just underwent 2 surgeries to get all the cancer out. Now I am being sent to an oncologist I had no choice in choosing. That is the way of the world. It must be nice to be able to pick and choose, but it isn't possible for a lot of people. I did do research on the net but getting any info out of my surgeon was like pulling teeth.
Nancy Wride (Editor) October 27, 2012 at 09:38 pm
This is a first-person blog, fyi, not a news article, Ali, but fyi, I think that Erin is, as a stage 4 breast cancer survivor, simply trying to help others with breast cancer, and their families, get the most out of doctor appointments. And it sounds like your experience has been unnecessarily difficult, for which I'm very sorry.
Shelley Marks Kramer October 27, 2012 at 10:46 pm
I lost my beautiful Mom to bc in 1982 when she was just 56 years young. she had worked for Revlon cosmetics putting toxic products on women for 20 years across the US. I am a cancer survivor myself, starting researching why there is much cancer, especially women, and found out about the chemicals in everyday products we all use on our bodies and in our homes. I became director of Cancer Prevention Coalition educating the public on awareness of environmental toxins in personal care and beauty products. Mammograms are xrays (which are known to cause cancer). Thermograms are safe forms of examing the body for cancer and inflamation. It has been around since the 1940s, yet women are not told about this.
I pray for the women and men who get cancer and for their speedy recovery. I have lots of information on my .org website to help consumers understand what they are using. publicsright2know.org. , PreventCancer.com,ThinkBeforeYouPink.org, Campaign for Safe cosmetics.org, all great websites to understand this information
Erin Vidovich October 28, 2012 at 04:29 am
Ali, I have been fighting breast cancer for 5 years and am now stage 4. I also have HMO insurance, but have a choice of IPA's and within the IPA a choice of doctors. Perhaps your plan is different. I'm sorry to hear of your difficult experience. Shelley, I am sorry for your loss of your mother (I am 52) and for your own battle too. Cancer sucks and it happens way too often. Thank you for your important work spreading awareness of cancer dangers and for sharing this information!
nonoise October 28, 2012 at 12:27 pm
I read about the potential increase in cancer just by having the mammograms. That the potential increase is great. What are thermograms?
Sarah Creeley October 28, 2012 at 12:49 pm
I was diagnosed with breast cancer in 2008, and I was helped by a book I read that was published by John Hopkins Hospital with narratives from people with all different stages of cancer, and from all of the different caregivers; surgeons, radiologists, etc., and included thorough descriptions of all possible treatments.
This book was incredibly helpful to me! I gave it to a friend, so I don't have the title, but John Hopkins Hospital should be a good source of information. I was very fortunate in that my surgeon was able to remove all of the cancerous tissue, so today, I am cancer free.
Erin Vidovich October 28, 2012 at 12:50 pm
According to the American Cancer Society a mammogram is roughly equal to the amount of radiation one is exposed to on a commercial jet flying from New York to California and that it does not significantly increase the risk for breast cancer. Mammograms today are said to be much lower radiation than they were years ago. I'm not familiar with thermograms -- Shelley, could you tell us more?
SPB November 8, 2012 at 08:27 pm
Fight the good fight Erin! I hope the blogging helps you get some of that frustration out and maybe get a few people to check on their own health in the process. Also, have you looking to getting a prop 215 card? It was a lifesaver for me when I was undergoing chemo for stage 4 Hodgkin's. I'd go from puking to hungry in 10 minutes.
Diana Brueggemann November 9, 2012 at 11:46 am
Hello, Erin. I am Barbara Brueggemann's daughter-in-law (Jim's wife). Pat and Barbara have told me about the positive impact you have on so many others even as you fight cancer yourself. I intend to follow your blog. Our family faced this battle as my mom was diagnosed in 1965 and my sister had ovarian cancer for 6 years. Your work to support and educate as many people as you can is such an important gift to those who are in the midst of the battle as this crappy disease leaves no family untouched. Thank you for all you do for others. I look forward to following your journey.

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Nancy Wride (Editor) June 17, 2013 at 01:40 pm
Hi Mark. I'll see if I can find out. Roughly what time and nearest landmark if any?
Nancy Wride (Editor) June 3, 2013 at 12:49 pm
Love it! Thanks to our new bloggers. :D
Should he be teaching your children?
Mike Ruehle June 3, 2013 at 01:36 pm
Prior to his election as a write-in candidate, Councilman Patrick O'Donnell told the Long BeachRead More Business Journal on February 28, 2012 the following:***** LBBJ: If you win the reelection, will you commit to a full four-year term?***** Councilman O'Donnell: If you run for four, you serve four. ***** LBBJ: So, you're not going to run for Assembly in two years? ***** O'Donnell: Correct. ***** LBBJ: No matter what? ***** O'Donnell: Correct. If you run for four, you serve four. ***** If you can't trust O'Donnell's word, why would anyone vote for him to be their representative for political office? ***** http://www.lbreport.com/news/jan13/odonlbbj.htm
Nancy Wride (Editor) June 3, 2013 at 02:22 pm
And do his supporters care about this, do you think? No doubt others will.
Mike Ruehle June 3, 2013 at 11:43 pm
Regarding, "do O'Donnell's supporters care?", many of O'Donnell's supporters are inRead More elected and appointed public positions, and their support of O'Donnell includes placing the financial burden of a $150,000 special election on the taxpayers. I would think that a responsible journalist would ask each of them about that issue.