About that risk assessment

There is all this talk these days about what you can do to reduce your risk of cancer, dementia, chicken pox, or the common cold, among a million other things. You know all the advice - eat broccoli, exercise, don't drink, lose weight, exercise, eat margarine no eat butter, drink red wine no white - and all it does is confuse the crap out of us.

Then they start to give people personal risk assessment for an ailment and expect us to believe them. How much conflicting medical advice do you hear on a given day? A lot. Eat red meat and chocolate, no don't, yes, well a little, and the famous words - in moderation. How can you be expected to believe anything?

When you are told what your risk of some thing is - whether being diagnosed with cancer or being hit by lightening, don't you always harbor that little thought in the corner of  your brain that of course they are only talking about other people and not you or anyone you care about. Its always going to affect those other faceless people you don't know.

So why all the surprise when a new study shows that one in five women don't believe their breast cancer risk? I can honestly tell you I was very surprised by both my cancer diagnoses. I thought my back pain was the result of muscle strain and not the permanent debilitating state of the disks in my spine. I thought my aches and pains that turned out to be rheumatoid and fibromyalgia were just normal aging.

Sometimes I think, they were all wrong and I am really a healthy person who can live the way I used to - working full time, having a social life, and going off on adventures regularly that involve beaches, mountains, and the great outdoors.

Seriously, we hear so much conflicting medical advice and then if someone gives us a risk assessment, we are supposed to believe them? I think a risk assessment is like listening to the weather forecast - there is a good chance Saturday will be rainy and it should clear out for Sunday but watch out for a hurricane next week. How do they really know?

Too many screening tools

Now the big 'hoo haw' in the medical world is preventative care. You know they want people to have annual physicals and get certain screening tests - mammograms, PSA, and colonoscopies. I personally think a bit of prevention goes a long way.

But we can't focus on that and test everyone to death (bad choice of words there?) can we? I mean its bad enough that I go to my PCP for a physical and I get sent for blood tests. I used to get annual chest x-rays because I have had a thingy in my lungs but after thirty years of annual commemorative pictures, they have changed protocols and said I no longer need those.

I also still get annual visits with the radiation oncologist and breast surgeon, three times a year with the medical oncologist, twice a year with the endocrinologist and four times a year with someone in rheumatology which is more than the average bear. Because with my medical history, they need to be sure but I am not so sure about the rest of the population. How many tests do they need? I question this.

Last year medical organizations came out about tests we generally do not need. I blogged about these somewhere in my blog but can't find them... I have to get to work, I don't have hours to dig through my blog so trust me it is there.

Now medical research is busy adding new screening tests. Some British researchers have found a link between lifestyle and developing rheumatoid arthritis. They found:

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

 "... they found that smoking, obesity and having diabetes, all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease."

Their recommendation, as a result, is to develop a screening tool to identify patients with a higher risk and who could be given advice on  how to reduce their risk. (I'm not signed up for any special social class so how would I know if I am at a lower risk?) Not helpful.

So let me review this. The movement these days is to reduce unnecessary tests and research is creating more tests. Sounds like a vast conspiracy to me.

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

they found that smoking, obesity and having diabetes all increased the risk. It was also found that drinking a small amount of alcohol and being in a higher social class were associated with a reduced risk of developing the disease.

Read more at: http://medicalxpress.com/news/2013-03-links-lifestyle-rheumatoid-arthritis.html#jCp

Its a vast conspiracy

Everything can now kill us off. Now they say the radiation for diagnosis and treatment of breast cancer can cause esophageal (I get points for spelling that right on the first try) cancer. And that's in addition to leukemia and ischemic heart disease. Gee thanks. So should I skip the breast cancer treatment to avoid all these side effects or do I go for getting rid of one ailment and hope I don't get all the other potential ones.

Tamoxifen has been known to cause endometrial cancer. Chemotherapy in general causes chemobrain and temporary or permanent neuropathy. Hormonal treatments cause weight gain. But you are supposed to stay thin to prevent increasing your risk of recurrence.

I can go on and on.

Its a vast conspiracy I tell you.

News flash: confusion among cancer patients

That's not really news. Nor is it the real title. This is the real one:

"Some 20 percent of women overwhelmed by cancer treatment options: study"

I doubt that number. I think its much higher. Like 100%.

And not just breast cancer patients but all cancer patients.

This article claims that 20% of breast cancer patients are overwhelmed by their options and mostly blame it on lack of education. I have a college degree and it was my second cancer and I was overwhelmed. My husband has a Master's degree and was overwhelmed by his options.

"And people who are overwhelmed tend to regret the choices they made." Hmmm... Maybe they felt they were rushed into a decision or couldn't understand the options and finally just did whatever their doctor made sound the easiest.

"The findings, which appeared in the Journal of General Internal Medicine, don't mean that women should not be fully informed about their treatment options, researchers said, but rather that doctors may need to find new strategies to communicate with patients, especially the less educated."

Skip the part about the less educated. I think the availability of information on the internet and other sources combined with their doctor's advice is a good combination. And its not the level or quality of  available information that's the problem. Its the lack of the doctor's support in making the choices.

No we don't want our doctors making our choices but we also need them to decipher the information - they went to medical school and here is an opportunity to use their knowledge to help the patient instead of just dumping it all on them.

Why don't they say things like:

"I recommend chemotherapy and the standard protocol is XYZ. This is the most common protocol for women with a similar diagnosis to you. The latest research supports this protocol. Most women do fairly well with it but these are the most significant short and long term side effects. Here is a little handout you can take home and read it. This is a systemic treatment which should kill off any cancer cells in your body.

Before surgery we recommend a lumpectomy instead of mastectomy because we think we can get clean margins (which means enough space around the tumor so we think we got it all.)

After chemo, we recommend radiation for seven weeks or so. This is a local treatment which will help kill off any cancerous cells in  your tumor's neighborhood. We recommend this protocol instead of mammosite because...

Finally, if you want to get more information on treatment options, I recommend these two or three websites."

What I want is a nice simple conversation with a doctor who lays out the information in an understandable fashion and welcomes a discussion on options. And who will explain the ups and downs of different options.

I don't need a medical lecture which feels like I wandered into medical school. I don't need someone to read a textbook to me. I don't need fear mongering to make me feel like I'm going to die. I can do that to myself 24/7.

I don't think this issue is limited to cancer patients. I think its fairly common. Doctor's should be required to share their secret decoder rings with patients.