Ignore the Statistics

Once again I have been faced with explaining that a 3% death rate does equal a 97% survival rate. Often cancer patients are given numbers which they do not understand and they focus on the bad part.

First of all, you are not a number, you are a human being.
Second, numbers are generalizations.
Third, numbers should be ignored.

Finally, if you must look at numbers look at the positive side of them. Its not a 5% death rate, its a 95% survival rate. That sounds much better.

Sheesh....

The Really Bad Reason For Decline in Cancer Rates

There is a really bad reason for declining cancer rates. That is when people lose their health insurance and stop going to the doctor. New research has recently found that as people lose their jobs, they lose their health insurance and stop going to the doctor so fewer cancer cases are diagnosed.

"As the country plunged into recession between 2008 and 2012, something unexpected happened: An earlier small decline in the number of new cancer cases became a much bigger one."

And...

"A 2015 analysis in the Journal of Cancer covering the years from 1973 to 2008 found that the incidence and treatment of cancer in the United States dropped during recessions and with increased unemployment rates.

During such periods, patients were perhaps more likely to forgo tests for early detection or ignore symptoms due to financial consideration, the researchers suggested."

Unfortunately this does make sense. If you lose your job and can't afford to pay Cobra coverage, medical visits will probably cease. If you don't see a doctor, you can't get diagnosed with anything. 

[This isn't a political post but now our new president wants between 14 and 24 million people to lose their health insurance. (Just saying....)]

This shows the value of health insurance. And its not just cancer. If you don't go to the doctor there are lots of other things that can also eventually kill you. If you don't have insurance, you really want to be careful about how you are feeling and if you do feel something is wrong, find some  place, any place (besides an Emergency Room) to get checked out. You are your best advocate.

Damn, the politicians.... But its not a political post.

I Think I Should Go Back To Bed

Sometimes the day just doesn't start off right.

• Somehow my laptop screen is cracked. It was fine last night.  I have no idea how this happened. I can order a new one and have it home waiting for me when we get back. (I get to use my husband's in the meantime.)
• I get an email that says people with RA have lower cancer survival rates. Need I say more?
• We are at the beach and its cloudy. Where's the sun?

All reasons to go back to bed....

American Cancer Society's 2016 Outlook

Earlier this week, the ACS released its new outlook for 2016 for cancer death rates in the US. As part of this, they provided four essential cancer charts. I found them very interesting, and hopeful. The first chart deals with cancer death rates over decades.

And the answer is they are going down. Look at the changes since 1990 or so! Look at the declines. The point is there, the death rates are lower than they were 25 years ago. Modern medical research has made a big impact on cancer deaths in case you were wondering why we spend so much is spent on it.

The next chart deals with types of cancer being diagnosed each year. I am very disappointed to see that thyroid cancer has made it into the top 5 types of cancer diagnosed for women each year.

The third chart shows us where lifestyle related cancer causes are highest. No surprise there - the deep South where obesity and poverty rates are highest also has the highest cancer rates. The healthiest people are in the West.

Finally, this is the chart that strikes the deepest chord with me. Look at how the rates of thyroid cancer have increased in recent decades.

Thyroid cancer used to be very rare. Not so much any more. More on these charts is available here.

Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:

And which are the top states with the highest rates of breast cancer?

1. New Hampshire (141.7 incidences per 100,000 people)
2. Massachusetts (135.5)
3. Connecticut (135.2)
4. Minnesota (135.1)
5. Washington (133.9)

I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.

A trip down memory lane

Back in 1971-2, half of all cancer patients lived one year. Now, in the UK at least, half of all cancer 'sufferers' (how is that for a horrible term?) live for ten years. I would assume the rates are similar, or even better in the US. But even in digging around in the National Cancer Institute's website, I could find the data.

The actual quote is:

"The analysis showed that in 1971-2, 50% of people diagnosed with cancer died within a year. Now 50% survive for at least a decade - up from 24% in 1971-2.

But the findings, based on the outcomes for more than 7 million patients, also showed that for some cancers, survival rates were still very low.

For example, just 1% of pancreatic cancer patients and 5% of lung cancer patients can expect to survive for 10 years."

So there is good news and bad news mixed together. But it does show a huge improvement in cancer treatment and research.

The goal is to have it increase to 75% survival rate for ten years. Its not just treatment and research but also screening and earlier diagnosis which have come in to play.

So progress is good. It shows we how far we have come. But we also need to work on the vocabulary. Sufferers? Really?

The American Cancer Society has just published its latest statistics for 2013. I always scan through this document every year because I find it full of little cancer tidbits and factoids that are interesting from the patient point of view. You can view the document here.

The best little factoid this year's statistics provide is that cancer deaths are down 20% since 1991 when they peaked. This is the result of many advances and programs:

- smoking reduction since the 1960's
- screenings - mammograms, colonoscopies
- treatment options - radiation, chemotherapy protocols, hormonal treatments, and more.

 

While this is good news, we still have a long way to go in treatment, prevention, and cure.

I must have missed this memo

Now they tell me what I could have done to help prevent my cancers. I must have missed this memo. According to new research, half of all cancers are preventable - mostly through lifestyle changes.

"A report, published a few weeks ago in the journal Science Translational Medicine, says that more than half of all cancer is preventable. And doing so doesn't mean you have to eat a ton of broccoli, drink twig tea or swallow strange supplements."  I am happy to skip twig tea and have eaten plenty of broccoli in my life time.

We know that smoking causes lung cancer and several others. More exercise and less alcohol can help prevent breast cancer and tanning causes melanoma. I love it when they (that would be the evil them who rule the world) tell us these things after the fact. A 2005 study from Harvard named '... nine cancer risk factors that could be controlled by personal choice or social and health policy changes anywhere in the world. They include obesity, low fruit and vegetable intake, physical inactivity, smoking, alcohol use, unsafe sex, urban air pollution, indoor smoke from household use of coal, and contaminated injections in health-care settings.'

I will say I never  knew unsafe sex  or contaminated injections can cause cancer - I thought they caused diseases. But these lists always give us cancer people guilt trips - the basic 'what did I do wrong?'. To quote the movie '50/50', 'but I recycle'.

But then the Canadian Cancer Society tells us 'cancer is no one's fault'. Why thank you. I was getting that guilt trip started. But then they add '...40% of Canadian women and 45% of men will develop cancer during their lifetimes. To help protect yourself, don't smoke, eat healthily, wear sunscreen and get up and move.' I believe the rates in the US are 1 in 3 women and 1 in 2 men will be diagnosed with cancer in their life time.

I guess the guilt trip is optional. But next time I'll try to read the memo first.

They did it again

Once again, they changed their mind. This is the proverbial 'them' who create these vast conspiracies to oust political candidates, were the ones who really broke the window, or the the ones who change medical standards. Yes, more medical standards are changed in a vast plot to confuse the patients. Now we do not need annual pap smears, one every three to five years, depending on age and who you listen to.

In the 1930's they started suggesting annual pap smears as cervical cancer was the number one killer of women, more than breast cancer and lung cancer. Now only 4,000 women are died of cervical cancer and most had never been screened for cervical cancer or it was more than ten years prior.

I am confused. If women who aren't screened are the ones who are dying of cervical cancer and the women who are screened are not dying of it, why don't we need to be screened. Doesn't this put us all in the category of being unscreened or potentially dying of cervical cancer?

The suggestion is that if a woman has normal pap smears for three years can go to once every three years as it is a slow growing cancer. I'm all for less testing but don't we all need some testing? I don't know, I am confused. I'll have to think about this one for a bit.

We all need another math class

We need a math class that explains the importance of statistics - the fact that there is more to statistics than just the number. We always need to look at both sides of the equation.

"What are the harms of this screening test? What are the potential benefits? If the patient gets an answer of increased five-year survival, that's an indication that their doctor doesn't know what they are talking about," Brawley said.

Cancer screenings are lauded as being the most important thing we can do to increase survival rates. Yes they help us find cancers earlier, before they become symptomatic. This is important and we should not skip screenings.

But, and there is always a big fat but(t), the survival rates are not the important numbers. The death rates are more important:

"Doctors were three times more likely to recommend a test that increased the (irrelevant) five-year survival rates from 68 percent to 99 percent than to recommend a test that slashed the much more important death rate from 2 in 1,000 people to 1.6 in 1,000."

Yes this is a tad bit confusing and I had to read the same article three times to figure out what they meant, and I took statistics (but I do have chemo brain so maybe it has countered my education).

"The reason is that screening automatically increases survival rates, because finding a tumor early means people live longer with their cancer diagnosis than if they had waited until they had symptoms to see a doctor -- regardless of whether or not anything is done to treat them. 

In some cases, such as slow-growing prostate cancers, the tumor might never have bothered them in the first place. That means screening, and the further tests and treatments that might follow, would have led to costs and potential side effects without any benefit to the patient -- a phenomenon called overdiagnosis.

"For helping people understand if screening works, survival rates are misleading," said Dr. Steven Woloshin, of Dartmouth Medical School in Hanover, New Hampshire, who worked on the new survey.

He told Reuters Health that death rates gleaned from clinical trials are the only reliable way to judge if a screening test is effective. But organizations that promote screening, such as the breast cancer charity Susan G. Komen for the Cure, tend to prefer survival rates, which sound more impressive."

So we don't want the survival rates, we need to understand the bigger picture - would this cancer ever have been a problem for me? Or would it have taken 30 years to get to be problematic and that is well beyond my life expectancy? Cancer rates increase as people age, so I can see this being important for an older adult. Would it have been a problem for them ever? And the potential side effects from cancer treatment, can cause other cancers and lifelong medical problems.

For now I'll keep with my screenings but will also remember to take the findings with a large grain of salt.

That five year mark

So the question arises - why five years? Why was five years selected as the survival rate time frame used in cancer statistics? I mean why not 3, 7, 6 or 4? I have no idea. This year I will reach the five year mark with breast cancer and I am not jumping up and down with joy. I think it will be just another day. I don't divide life with cancer into five year increments. Life doesn't get broken down into five year increments. We celebrate birthdays, anniversaries, and holidays annually. But communist countries have five year plans. Is life with cancer broken down into five year plans as well?

In the past five years I have lost a few friends to cancer. One was lost to triple negative breast cancer which I have since learned if it is going to recur it usually does in the first 18-24 months. She only made it about 4 years from her diagnosis. So why five years for that? She and others like her just become part of the ones who didn't make it when you look at the statistics.

When I was diagnosed in 2007, a Boston area TV newscaster went public with her diagnosis and is now talking about her five years with cancer. She is also frustrated by the lack of a cure so far. It was nice to follow her treatment as she was a few months ahead of me. Its now nice to see that she is doing well too but acknowledges how her life has changed.

I am just not sure I understand why they selected five years as the increment for life with cancer as life goes on day by day.

Numbers in the wrong direction

This is clearly a number going in the wrong direction. 2011 - 48,020 cases and 2012 - 56,460 expected cases. This is the number of cases of thyroid cancer in the US. When I was diagnosed there were around 10,000 cases a year. I thought the number was up to 35,000 or so. But how did it get to 56,460?

Thyroid cancer used to be a relatively rare cancer and that is no longer the case. These numbers make it more common than oral cancers, all leukemias, and pancreatic. Yes it is a relatively curable cancer but still it is cancer and its diagnosis represents the beginning of a life time of watching.

This visual gives a better idea of the rate of increase and is from the National Cancer Institute. That is a bad cancer chart with its increase. There are lots of discussions on why this cancer is increasing in prevalence - increased detection, radiation exposure, cell phones, dental x-rays, blah, blah, blah. But they don't really know.  To put it in perspective, thyroid cancer is diagnosed at the rate of 1/4 of that of breast cancer or lung cancer.

Once you have a thyroid cancer diagnosis, it means you no longer have a thyroid. And that little tiny gland is very important in maintaining your body. You have to constantly have your thyroid levels checked and some people are never able to get balanced on their synthetic thyroid hormone.

I think thyroid cancer has not had a lot of focus because it wasn't very prevalent and has relatively low mortality rates. Perhaps that needs to change to focus on slowing the incidence and what can be done to reduce it.

So where should you live?

It seems that it is important where you live in terms of rates of cancer and cancer survival rates. First I found a list of the top fifty towns and cities in Massachusetts with the highest rates of cancer - this data needs to be taken with a large grain of salt. The city with the highest rate of cancer is Nantucket - which is also home to lots of retirees and seniors. Cancer is more prevalent in older people so it would make sense where more old people live there would be more cancer.

Then I find an article on the UK talking about their great successes in increasing survival rates for some types of cancer but not others. One theory on why some blood cancers are have such high survival rates is that those patients are quick to be referred to a specialist. Now that's food for thought - if you have a cancer diagnosis, find an oncologist who specializes in your cancer.

Finally, as of 2007 cancer survival rates are increasing across Europe but still lag behind the US. And rates are worse in eastern Europe than in northern and western European countries. So location does matter. But also the best cancer survival rates are in Sweden, Norway, and Denmark. "The United Kingdom in particular comes out badly in the tables, showing cancer survival rates that are among the worst in Europe." I find this interesting in that it is sort of a rebuttal for the article above. I don't think this is a reflection on national health care because most of Europe has one form of it or another. Maybe its reflective of lifestyles.

But are their higher rates of other diseases in other places? Probably. This is only about cancer. We can all live in caves and stay out of the sun and eat raw food and never touch any chemicals...

Screening tests - good or bad

Screening tests have come a long way in recent decades. Mammograms, as an example, were virtually unknown in the 1970's and started being suggested as a way to detect breast cancer by 1980. Then they became recommended annually. Then digital technology came along so they could detect even smaller and smaller cancers. And the rate of false positives went up - causing unwanted stress and unneeded biopsies.

Now we are at a point were tests are so good they are finding small benign 'nothings' or very early stage cancers that are so slow growing, they would never be an issue.

Using this chart, you can see the risks of getting or dying from some cancers:

We talk about the tests, screenings, and costs. But if you look at the numbers, what are the chances you are going to die from it anyway? So where do you draw the line on what you test for and what you ignore? Is it really worth it to have that every ten year colonoscopy if you have no other risk factors - like family members with the colon cancer?  Your risk of being diagnosed in the next 20 years, at age 40 is less than 1%.  As the article states, "The average woman has a 3 percent lifetime risk of dying of breast cancer, a low risk for a disease that women find so scary. But the chances of getting breast cancer do gradually increase with age and other circumstances."

I am not suggesting that we stop screening tests. I am diligent about getting them as suggested - with my medical history wouldn't you? But they are worthy of another look. The biggest killer in the US is heart disease. How do we test for that? We start with pulse and blood pressure readings which are quick and easy and can be repeated at minimal expense. But the costs of a mammogram, CT scan for lung cancer, or colonoscopy are more significant - both financially and emotionally when you add in the stress of colonoscopy prep, false positives, and unneeded biopsies.

I met a woman recently who had cancer. She said she would be out of touch for a few days as she was going to have a week of screening tests. We talked about them briefly. She said she wasn't really concerned about them but that they do induce either scanxiety or scanphobia in those who have to go through them. That little clench in your gut each time you drive to the hospital for yet another one - they really start to add up over time.

How can we take care of ourselves and catch 'bad things' as early as possible? Maybe we go back to eating right, exercise, maintain a healthy weight, blah, blah, blah (where have I heard this before?). I don't know. I just get to go to the doctor all the time.

That other cancer

This is October so its all about that pinked stuff. But there is my other cancer - thyroid cancer. When I had thyroid cancer, there were something like 12,000 cases each year. Now there are a lot more, I think just under 40,000. According to the National Cancer Institute, in the 1970s there were less than 5 cases per 100,000 people, now there are more than 12 cases per 100,000 people. So take that fact and the increased population and basically the number of cases has at least tripled in the  past 30 years.

Thyroid cancer rates in young women are increasing the most. It is not really understood why the rates are increasing so much. Yes it is a treatable cancer, often called the 'good' cancer not that any cancer can ever be good - those people who call it the good cancer, deserve a smack in the head. The common treatment for thyroid cancer is to remove the thyroid.This is a very important gland in your body and regulates many things. While synthetic thyroid hormones are available, you are never quite the same.

Thyroid cancer deserves more recognition as it is increasing in incidence, not decreasing as many cancers are.

Its nice to know I am not alone

Back in the dark ages of the late 1970's through the early 1980's, there were approximately 10,000 cases of thyroid cancer annually in the US. More cases are in women than men and it did occur in teenagers as well as older adults. It included me in 1981. Its an isolating disease. I felt alone.

Then in 1984 I had a benign breast tumor. Then in May 2007 I had breast cancer. Then in December 2007, I had another benign breast tumor. Now it turns out, there are lots of people out there like me.

Finally there has been a study about people like me - 'Childhood Cancer Survivors At High Risk for Multiple Tumors as They Age'.

The Childhood Cancer Survivor study "was launched in 1994 to identify the challenges facing childhood cancer survivors and to develop new methods to ease or prevent late effects." Raising hand, 'yoo hoo - me too, me too!!!'. The study found that "1,382, or 9.6 percent, of survivors developed new tumors unrelated to their original cancers. About 30 percent of those survivors, 386 individuals, developed third tumors. Four or more tumors were found in 153 survivors in this study."

First they defined childhood cancers as age 20 and under. I was 19. They followed over 14,000 people who had had a childhood cancer, 70 percent had received radiation which has shown to increase the risk of later cancers. I did not have radiation but I did receive radioactive iodine. The study states "Female survivors whose childhood cancer treatment included radiation were among those at highest risk for later tumors, particularly breast tumors."

Additionally, "Risks were also associated with benign tumors. Investigators showed survivors whose second tumor was a non-melanoma skin cancer had a 1 in 5 chance of being diagnosed with another, more aggressive cancer within 15 years. The group included 485 survivors with either basal or squamous cell skin cancers. "These survivors are candidates for additional genetic evaluation to look for an underlying genetic propensity for tumor development or an inability to protect healthy cells against the harmful effects of radiation," Armstrong said."

Even though this focuses on skin cancers I find it interesting they want to have further studies on the high propensity for tumor growth.

I am not a medical person at all - just a patient (and because of my medical (mis)adventures, I can ace all the medical related Jeopardy categories). But I do find some comfort in the fact that there are more of us around. We need to have annual conferences with big parties to talk about life with cancer. Research oncologists could listen to us and learn more.

I am getting ahead of myself here but my point (and I need to have a point) is that more research is needed for this growing population on the results of the long term effects of cancer treatments, radiation in particular. What doesn't kill us, makes us stronger... but it may be our undoing in the end.

I am a statistic

The state of Massachusetts keeps a list of cancer statistics on their website. I am not entirely sure why we become statistics but we are.

In the town I live in, there were 197 cases of breast cancer in the five years 2003-2007. There are 196 other women like me in the same town. I probably know 15-20 of them so we can be statistics together.

The National Cancer Institute publishes data on cancer rates on their site which now go from 1975 to 2008 so they include both my cancers.

The American Cancer Society also posts a lot of data on cancer including deaths through 2007 and estimated new cases for 2011.

When I was diagnosed in 2007, all the data available was through 2002 or so. It was rather disappointing because that wasn't what we wanted. The biggest reason for the delay is not only do they have to count all of us but they had to wait for the five year survival rates to be compiled.

Unfortunately, the National Cancer Institute only has limited statistics on five year survival rates for diagnoses occurring through 2007. So we are getting close.

Because face it, all we want to know when we are diagnosed with cancer is:

'What are my chances', 'Am I gonna die?' and 'How soon?'

The numbers, of which there are lots, are never satisfying. The old data does not give us the current story. We are told they are based on the treatments that were available at that time and not on current treatment protocols which are better. It is rather frustrating but we are forced to be optimists.