Monday, November 30, 2009

Understand, then Advocate

Last week Liz Szabo from USA Today sent me a note asking me if I'd be willing to talk with her regarding the revised guidelines regarding breast cancer released by the USPSTF.

So I said, "Absolutely, I'd be honored."

I'd already been following much of the discussion and was amazed how quickly the issue flared.  One by one all the major cancer institutions and hospitals published their own recommendations and made their physicians available for interviews. Still, there's a lot of information/misinformation about the recommendations we need to keep in mind.

1) The guidelines are recommendation developed by an independent panel made up of representatives from excellent organizations, universities and think tanks.  They ranked/rate six different methods for breast cancer detection.

2) The recommendations were based on scientific analysis of existing data -- I have the actual report -- its about twelve pages long.  It doesn't readily condense to tweets, blurbs or anything like that, unfortunately.

3) Mammography has been controversial for a long time. Nothing new here. It under-detects some cancers (like mine) and over detects others that may not have ever developed into invasive disease.  Mammography is problematic in detecting cancer in younger women.  Most of the young survivors I know and have spoken with FOUND THE LUMP/discharge/change themselves and pursued their concern aggressively.

4) The recommendations  have been the standard in Ireland since 2000. Are the comparative rates of breast cancer widely different?  I don't know but will certainly check that out. I would be surprised if they are.

5) The recommendations are for "the average woman," the woman without risk factors. Women with risk factors are excluded.  How those risk factors are defined will become an issue.  I've already asked MD Anderson how they define 'risk factors' and as yet  have received no answers.  When I was diagnosed ('98) the doctors who examined me felt that two great aunts with breast cancer and an extensive family history of cancer on both sides of my family did not constitute a "risk factor."  I said "oh, really?" then and would use the same tone of voice now.

All this said I wouldn't budge from the 2002 recommendations for a minute -- but not for the reasons you might think.  The beauty of the existing system is:

1) It gets women in the doctor for some minimum of health care on an annual basis when other problems might be discovered;
2) We already have millions of uninsured women who are NOT being screened -- do we really want to add more to a potential public health catastrophe?
3) The health of the US public is already bad, growing heavier and exercising less (obesity a factor for BC);
4)The guidelines are based on past data and make no provision for the existing health care problems existing in the US.

I'm long winded but understanding is truly critical.  We need to advocate for better detection methods for younger women -- the 50% under the median age of 61.  We need to advocate for prevention, and continue advocating the benefits of the healthy lifestyles. We need to keep up the great example of understanding our own health.

So when Liz asked me if I thought the guidelines were fair?  I said that numbers are numbers (I'm not going to deny a statistical modeling process I can't even describe) but no number or guidelines are fair if applied by insurance carriers to deny tests to women or men who need them. No way.  That isn't fair at all.

Best regards to all of you,


Anonymous said...

An excellent well thought out response to the current debate Jody.

A few things struck me while reading your post. Firstly, you have actually read the report! I am not sure many of those who have been commenting over the past two weeks on Twitter and other social media sites have gone to the trouble of this, and it is important if we are advocates who wish to enter this debate to have done our research. As you rightly point out, it is a complicated issue which cannot be reduced to a tweet! So thank you for taking the time to inform yourself and only then make your comment.

You mention the Irish example and while we do not have a perfect health care system here, we do have a national screening programme available free of charge to all women aged between 50-64. The age limits are under review at the moment, because once again that is not a perfect screening demographic either! Younger and older women are also at risk, but as you know this is the highest risk category.BreastCheck is a Government funded programme providing breast screening and invites women aged 50 to 64 for a free mammogram on an area-by-area basis every two years. The aim of BreastCheck is to reduce deaths from breast cancer by finding and treating the disease at an early stage.
Cancer survival rates are actually on the increase in Ireland, due I am sure in no small part to this kind of screening program. More info here if you wish to do a comparison of detection and survival rates:

Thanks again Jody for your informed response to this debate.

Jody said...

Thanks, Marie! We have so much food for thought all the way around, and as I said, this is just the beginning of a long conversation about screening, here in the US, in the UK, and for women everywhere.

The more we all learn, the more effective we can be.

I so appreciate you!!!

With love,

Debbie said...

Great post Jody! I have seen lots of comments flying around in regard to the new guidelines but have not ventured to look further into it so I appreciate the work you have done to really investigate and determine for yourself how you feel about this issue.
I am one of those younger women who found the cancer themselves. I had a mammogram 10 months prior with no indication there was an issue, but when I found the lump it was already 4-5cm. I know that for women under 40 mammograms are not that efficient due to breast density. But it seems crazy to wait until 50 to start screening. And as you say, if it limits women access due to health insurance issues all the worse!
I was struck by the fact that you said your doc would not consider you 'at risk' even though there was a history in your family. There is a big problem if they only consider you at risk when you actually are diagnosed!!! I guess my daughter would be considered at risk but I dont know. My surgeon told me that since I was 41 when I was diagnosed my daughter should start getting mammograms at 31! Maybe this advice will change over the next 20 years but that remains to be seen.
There is so much to consider and I think once again it highlights the importance of each woman being her own best health advocate and having a great and trusting relationship with her doctors. I know that is easier said than done but it is crucial if we are to get what we need. And the health insurance issues in our country must be dealt with too. You can advocate for yourself all you want but if you aren't able to get help paying for tests then where do you go from there?
Thanks for your post!

Annemieke said...

Dear Jody,
I think they called the right person to ask her opinion. Not only do you have a great way with words but you always make sure you know exactly what you are talking about. I don't think many people who have been commenting the report actually read all of it. You are so right: it is never fair to deny women the tests they need and if anyone can put that in words eloquently it is you!. I live in a country where those tests are standard and I'm convinced they save plenty of lives. Every year you hear from women getting early detections during these tests. So, you tell that lady exactly how you feel: if that doesn't make an impression I don't know what will. Love, Annemieke

katie ford hall said...

Very well said!

Jody said...

Thanks for stopping by! I appreciate your input and will look forward to hearing more about your journey, as well!

Best wishes,

chari olmedo said...

Great post, Jody,
Over the past two weeks I've been biting my tongue for a couple of reasons:
a) I haven't BC (or I don't know about it yet, if I do)and I am probably not considered as having the risk factor (although, like you, I have 8 family members who have or had different types of cancer, including 2 with BC)
b)I don't fully understand your Health System (in North America, I mean) so I don't really know if this is all down to Politics, as some try to pin it down,and cutting corners on a budget.
However, I figured (playing devil's advocate here now)that these people are talking about helping all different methods of detection get more effective and efficient by re-asigning age profiles according to statistics. Science would have never progressed if scientists had been forced to assess each breakthrough by the way it affects people individually. They need numbers, statistics, to go by and thus continue, or abandon sometimes, trials and experiments for the greater good of their research.
They need things to be black and white, most of the time, and the rest of us live in a variety of shades of grey.
I find it unfair to consider them stupid or heartless for doing their job efficiently and please remember their own family and friends will be on the same boat as everyone else regarding the changes on the guidelines.

chari olmedo said...

Sorry, Jody,
I meant to say:
'It's not fair when some people considered them stupid or heartless...' and 'can we all remember...'(refering to tweets, FB comments I've seen)I hope everyone understands I never meant you.
I love you and you are always fair and just, I think :-)

Jody said...

I completely knew you did not mean me -- love,

Jody said...

I completely knew you did not mean me -- love,

Raima said...

Great post, Jody. The world could use more thoughtful commentary like this. Not to mention people who actually read guidelines before they comment on them!

We discussed this at Thanksgiving with my husband's cousin who is an oncologist specializing in breast cancer. My 20-something niece asked him what he thought and he also disagreed with the guidelines, for much the same reasons you give here.

One thing that struck me about this conversation is how my niece and I had the same experience: all our women friends are angry about these guidelines. This whole thing has really touched a nerve. Thank you for shedding some sober light on an emotional issue.

Jody said...

I thank you for read and comments, Raima. And I want to know: can you define the anger? What is about? Someone we don't know "telling us what's good for us" or the fear that delayed screening might miss some cancers. We need to understand the anger -- and explain it -- to help communicate the facts about breast cancer and the facts/fiction of screening. I think you have illuminated an angle that has to be explored.

Thank you so much, my friend. I know you are a scientist and appreciate that perspective you bring to our conversation.