Friday, November 27, 2009

What You Need To Know About Breast Cancer Screening

My sister, Cyndi, was first diagnosed with breast cancer on December 31, 1998. What a great New Year’s gift! The diagnosis was based upon a biopsy of the breast, following a mammogram that did not reveal any problems. Now, my sister is pretty smart, so she asked for a copy of her pathology report and was loaned a copy of the “Breast Bible” from her doctor. In addition, it helps that Cyndi has several friends that are doctors and she likes to ask a lot of questions. Needless to say, Cyndi was very disturbed that the mammography process did not work to capture her breast cancer.
In February 1999, Cyndi had a lumpectomy with reconstructive surgery the following month. Unfortunately, the lumpectomy did not have clean margins. About a year later, Cyndi began to notice an orange peel look in her remaining breast and voiced concern to her doctor. So, she had another mammogram, and guess what – it also was clean! Cyndi felt like she was at the end of her rope and decided it was time to change doctors in August 2004.
Then, on September 1, 2004, Cyndi was diagnosed the second time with breast cancer. Once again, the mammogram of her remaining breast was clean and so was the ultrasound. The difference this time was that she had found a technician as concerned about the process of diagnosing breast cancer as she was. The technician just happened to have a friend that had recently undergone a mastectomy and was currently going through chemotherapy.  The technician’s friend coincidentally also had voiced her concerns about confidence in her recent mammogram and ultrasound. Cyndi pleaded with the ultrasound technician during the procedure to biopsy anything that looked remotely suspicious. Sure enough, during the procedure, he commented to Cyndi, “well there is a spot with a little shading”. Immediately, Cyndi responded with “please do the biopsy”!
The biopsy revealed that Cyndi had a tiny spot with cancer in her remaining breast, but less than 1 cm. The mammogram once again was clean. The Seattle Cancer Care Alliance ordered an MRI, which showed that she had a 7.5 cm tumor hiding. She thought that she must not have heard the information correctly. She knew that 1 cm is bad and at 7.5 cm, she thought her life was over. That was over 4 years ago.

On November 16, 2009, the U.S. Preventative Services Task Force (USPSTF) released its “Screening for Breast Cancer” recommendations that increased the standard age for women to undergo the mammography procedure from 40 years of age to 50.

The public has not taken this information in stride. The controversy over the new recommended guidelines has been the focus of several prime time newscasts. The emotional reaction from various individuals and organizations has followed a logical pattern. Women have responded with complete outrage, that some “obscure” group was trying to govern their bodies, and that proposed health care legislation would impose new rationing on their ability to get this “critical” procedure in the future.
Organizations such as Susan K. Komen For the Cure and the American Cancer Society publically denounced the new recommendations. Ambassador Nancy G. Brinker, founder of Susan K. Komen For the Cure (SKK) responded passionately to the USPSTF recommendations on Meet the Press with “This is a nightmare”. The full Susan K. Komen response to the new USPSTF recommendations can be found on their web site.

The American Cancer Society (ACS) is also continuing to recommend mammograms for women beginning in their 40’s after evaluating the same information as the USPSTF. Their full response can also be found at their web site.

And representing the scientific community, Nancy Snyderman, Chief Medical Editor for NBC News, responded on Meet the Press with “we are on the brink of becoming a scientific illiterate country”. Her particular concern is that we are relying too much on the anecdotal evidence and not enough on the science, which she feels supports the USPSTF recommendations.
Now let’s assume that all individuals and groups are right in their reaction to the new proposed mammography guidelines. Where does that leave us?
It is obvious that the mammography failed my sister, badly, and on multiple occasions. The ultrasound did not fair much better. The USPSTF has concluded that there is an unacceptable level of false-positives and associated anxiety with the mammography procedure. Fine, we know what does not work, but how about a plan to replace this outdated procedure? Why is everyone so focused on this unreliable technology?
For example, Dr. Nancy Snyderman’s concurrence, that mammogram’s provide little benefit to those under 50 years of age, would be much more tolerable if she also presented a legitimate alternative to this outdated procedure. Ambassador Nancy G. Brinker and the SKK and the ACS should admit that their investment of billions of our private donations has produced little, if any, advances in the prevention of breast cancer. By opposing the USPSTF guidelines, at least they are showing us that they are doing something with “our” war chest of charitable donations. Both the SKK and ACS should be much more proactive and aggressive in helping to advance breast cancer screening solutions beyond what was first developed in 1960 for the first patient screenings in 1969. Enduring forty years of the same unreliable technology while billions are being donated to charities that claim to be committed to improving breast cancer diagnosis is unacceptable.

Cyndi provides good advice for women trying to decide on their individual plan for breast cancer prevention. “Mammograms are good for women if they don't have dense breasts. If they do have dense breasts, they need an MRI. Neither time that I had breast cancer did the cancer show up on a mammogram or an ultrasound. In fact, they gave up on doing mammograms on me. The Seattle Cancer Center Alliance has started doing more MRI's. I think its something a woman needs to discuss with their doctor. If a woman does not feel comfortable with the decision that their doctor has made, they should get a second opinion. The only reason I'm here today is because I finally took charge. And I changed doctors and facility for care. Even when going through treatments, we need to make sure we get what we need.”

Cyndi is not looking for sympathy from anyone. In fact, her optimistic approach to living life continues to be an inspiration to me. She has also inspired others as well. One of my best friend’s wife, recently had a double mastectomy, and he mentioned that Cyndi’s experience was helpful to them as they were faced with very difficult decisions. And, the good news for the readers of Fritz’s Word is that she has agreed to become a resource for Breast Cancer survivors. Cyndi has completed the initial certification, and is in the process of becoming a peer counselor for the Breast Cancer Network of Strength, a 24hour hotline for women going through breast cancer, as well as for the husbands.

Please feel free to forward this article to family, friends, co-workers, or anyone else that you think might benefit from the information.


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