Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.

Screening Recommendations Based on Doctor Personal Experiences

Recently in JAMA, "...a research letter... explores how social interactions with friends, family and colleagues who have been diagnosed with breast cancer may affect a physician’s recommendations to patients."

What it found was that a doctor's personal experiences impact what they recommend for their patients. They did not necessarily follow the current guidelines. 

"Physicians familiar with someone with a poor prognosis who was not diagnosed via screening were much more likely to recommend routine checks for women between 40 and 44 years old and those over 75."

“Describing a woman whose breast cancer was not diagnosed by screening mammogram and who had a poor prognosis was associated with increased odds of recommending routine screening to patients within the designated younger and older age groups for which guidelines no longer support routine, universal screening,” Pollack et al. wrote." 

In my personal experience, my rheumatologist has been very hesitant to prescribe a biologic, such as Humira or Enbrel, for my rheumatoid arthritis. It is standard not to prescribe them to anyone who has been diagnosed with any cancer in the past five years because there is a TNF (Tumor Necrosing Factor) in them. 

Although I am more than ten years out from breast cancer and over 30 years out from thyroid cancer that translates to two cancer diagnoses before the age of 50. So she has been very hesitant. She even has conferred with my oncologist on this. Finally she has prescribed me Orencia which I have just started.

And the truth came out. At a recent appointment she told me that she had a patient who had had cancer and was over five years out from her diagnosis. My rheumatologist put her on a biologic for her RA and then she had a cancer recurrence. Who knows if the two were connected but that has had an impact on my rheumatologist. And she doesn't want to have this happen to any more of her patients.

“Our results suggest that helping clinicians reflect on how their experiences influence their current screening patterns may be an important approach to improve adherence to revised breast cancer screening guidelines.”

From a patient's point of view, I want impartial treatment for all my ailments. But there is so my crossover and overlap between them that discussions are often required. Due to my medical history, I have 'received' more screenings (a/k/a medical misadventures) than anyone else I know. I want the doctors to bend the guidelines to help me as best as possible.

Being Breast Cancer Savvy

Buried in another article based on a woman doctor's problems getting screened for breast cancer by the UK's NHS, are three rules on how to be 'Breast Cancer Savvy'

• You Don't Need to Examine Your Breasts
  All women, no matter what age, should get to know their breasts. But experts have stopped recommending self-examination routines. Studies have shown that most women who find breast tumours do so during the course of everyday life: while dressing, or just rolling over in bed. The key is to know what looks and feels normal to you.

I wholeheartedly agree with this. I am incapable of finding any lumps.

• Don't Ignore Symptoms
  The most common sign of breast cancer is a lump within the breast. But you might find one in the armpit or notice skin changes on the breast such as dimpling, and changes in the appearance of the nipple, or its shape or how it feels, or a discharge. Breast pain on one side that lasts after a period, a rash and any change in the size, shape or symmetry should be investigated.

Well 'doh!' If something not right, get it checked asap

• Make Sure You Go To That MammogramIf breast cancer is detected early, it is more treatable. Screening uses mammograms – a type of X-ray – to look inside the breast. All women between 47 and 70 are invited for screening every three years. NHS screening is opt-in after 70, so make sure you get in touch with your local unit to make an appointment: nhs.uk/breastscreening.

Um yes. Its a great tool for finding breast cancer before it gets really big and ug

I think I will be forced to blog about the rest of the article tomorrow maybe. 47 is way too late to start mammograms. My maternal aunt was diagnosed at 76 with breast cancer....  Grrr.

But in the meantime. Be savvy. Savvy is almost like being cool.

Those pesky breast cancer screening recommendations

Can I ask who is confused over the 'revised' breast cancer screening guidelines? Or should I just ask who isn't confused? Yes, no, yes, maybe, no one, everyone? How old? Not that young, should be older. Well maybe not. Not for everyone. Wait, oh just test everyone. No only for some people, talk to your doctor. That's a lot of different answers.

And in both my cancers I was clearly not a candidate for hitting the so called criteria for any testing. So I just ignore all the comments about too young or too old. Those really should be less likely or more likely instead of age related if you ask me. But they didn't ask me.

Anyway, so the USPTF (US Preventative Task Force) released a clarification on their breast cancer screenings earlier this week. They also claim they were misunderstood. And they want to clear up confusion. Well maybe the confusion was because what they said back in 2009 concerned everyone.

"The U.S. Preventive Services Task Force (USPSTF) released its final recommendations for breast cancer screening Monday in an attempt to clear up some of the confusion.

The group recommends that women at average risk for breast cancer should have a mammogram every other year beginning at age 50 up to the age of 74. Women in their 40s are advised to make an individual decision in partnership with their doctors, since the likelihood of benefiting from screening is lower for women in that age group.

Though this is an update from the group’s 2009 recommendations, the guidelines remain largely unchanged and a draft was released earlier this year.

The report, published in the Annals of Internal Medicine, also concluded that there’s not enough evidence to determine if newer 3D mammography is a good option for routine screening, or if women with dense breasts need extra testing.

The group’s 2009 report drew controversy for questioning the usefulness of mammograms for women in their 40s. But the task force says their words were widely misunderstood."

Blah, blah, blah. So in their clarification here they state that a mammogram every other year is all that is needed starting at age 50 if you have average risk. Let me ask all my friends in their 40's with breast cancer what they think if they had waited until 50 for a mammogram.

Okay, so medically maybe there is some logic in their plan. Or maybe not. If you look at breast cancer occurrence rates (from Cancer.gov):

Age 30 . . . . . . 0.44 percent (or 1 in 227)
Age 40 . . . . . . 1.47 percent (or 1 in 68)
Age 50 . . . . . . 2.38 percent (or 1 in 42)
Age 60 . . . . . . 3.56 percent (or 1 in 28)
Age 70 . . . . . . 3.82 percent (or 1 in 26)

It sees clear that most breast cancers occur after the age 40. So I don't understand this wait until 50 business at all. Now I am even more confused.

Over- and Under-Diagnosis and Treatment of Breast Cancer

I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.

The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.

Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.

But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.

I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.

Over testing vs. patient concerns

A new study in Canada states that early stage breast cancer patients are getting too many pretreatment imaging tests. An average of four after diagnosis. That's a lot.

In my case I had a mammogram that went bad and led to an ultrasound followed by a biopsy and a diagnosis. Then my surgeon sent me for an MRI to confirm there was nothing else. Then two surgeries, chemo, radiation, and hormone treatment. At some point a couple years after radiation,  I had a PET scan to confirm some aches and pains nothing - mostly because I was freaking out. Now I just have mammograms. As well as too many doctors wanting to check for lumps.

I am not sure what other tests I could have or should have had. Or needed. I think I got my share of radiation through all of that. So I am not sure what other screens I really needed.

But let's go back to the freak out I went through and a doctor sent me for what was probably an unneeded PET scan that found nothing. (I  no longer see this doctor, my radiation oncologist, as she used to tell me I shouldn't work because I had cancer and my husband should support me fully and other stupid statements.) This makes me wonder how many other doctors send patients for unneeded scans just because the patient mistakenly believes they have metastases. The doctor does the easy thing and sends them for some test so they do not have to deal with the freak out part.

In my opinion this goes back to the bedside manner stuff that isn't very present in medical school. If a patient is stressed about something, I do not think that sending someone for scans is always the right way to resolve the issue. I think it deserves an in depth conversation that includes the current screening standards, odds of their being an issue, and how to cope with the stress.

I asked my back pain doctor about more scans for my back as it had been five years since my last spine MRI. His response was there is no need for one as nothing indicated anything had changed. I can live with that kind of response. It keep me from being stressed - no indication of any changes. What if that my radiation oncologist had started a conversation with me about reasons the PET scan was not indicated?

In view of increased medical over spending and over treatment concerns, more conversations are warranted instead of more testing.

$1500 for an MRI

This was in the Boston Globe on June 12, 2015.

I had to post it. Too funny.  But not funny 'ha ha'.

Time to change the guidelines

Medical guidelines are put in place so there are fewer questions about what are correct tests and treatments for patients. They can be anything from - do you need stitches for that cut or do you need an EKG? The criteria used can be anything from age, general health, behaviors, diet, and much more.

Behavior is a big one. This is drinking, smoking, eating patterns, exercise, etc. But if behaviors of the general population change, the guidelines need to be modified to adapt.

A generation ago, more Americans smoked. Guidelines were developed for low dose CT scans for current and former smokers - designated as those who had quit in the last 15 years. They were shown to greatly reduce deaths from lung cancer as it was caught early for many patients.  The guidelines were used to determine who would receive this annual screening and for whom doctors would recommend the scan and the insurance companies would pay.

Now as fewer Americans smoke and do not return to smoking, fewer are eligible for the low dose scans and have their insurance companies cover them. There is a concern that more cases of lung cancer will not be caught as early resulting in more deaths. 

The age range

There has been the on going controversy on when to start annual mammograms for all women - is it 40? Is it 50? Many go with age 40 but some don't. And its another debate.

But there is the other end of the scale - when to stop yearly mammograms. Breast cancer becomes more common in women as we age. The older you are the more likely you are to be diagnosed with breast cancer. Its a known fact. But when do we stop screening women for breast cancer? (There is the same conversation about colonoscopies on when is too old.) Currently the advice is stop at age 75.

Seriously. I had never really known this. As we age, we become less healthy and less able to tolerate cancer treatment. Its pretty nasty.

A friend's great aunt was diagnosed with colon cancer at age 98. She was too fragile to stand treatment. My aunt was diagnosed with early stage breast cancer at age 76. She had a lumpectomy, radiation and is on an aromatase inhibitor (I'm not sure which one). If she was younger, they might have recommended chemotherapy.

Another side of this issue is the increasing costs on medicare for continued mammograms for women over 75. Yale did a recent study on this. Part of the increase is due to the switch from the cheaper older film mammograms to the new digital ones (from $73 to $115). But also the continued mammograms after age 75.

One side says the stress and anxiety for older women along with the costs are reasons enough for stopping them.

""Clinicians and patients need to start thinking about the bang they are getting for their buck," said Dr. Anees Chagpar, director of the Breast Center – Smilow Cancer Hospital at Yale-New Haven, and a co-author of the study. "We must be cognizant of our use of technology and healthcare dollars."

"Our country and health system have finally recognized that this aggressive and dramatic rise in health care costs is not sustainable," said Dr. Cary Gross, director of the Cancer Outcomes, Public Policy, and Effectiveness Research Center at Yale Cancer Center and one of the study's lead authors. "We need to make choices about how to prioritize our healthcare spending.""


The other side says that as long as women are healthy, they should continue to have them.

""Women should get an annual mammogram as long as they are healthy, and age should not be the discriminator," said Gruen. "Breast cancer is the enemy. We should not politicize things (such as screening mammography) that have been shown to save lives.""

So the age range for mammograms is somewhere around 40-75. If you get breast cancer before age 40 and after age 75, you may be SOL. Let's take the politics out of this and stop 'prioritizing' crap and look at the health of women as the real concern.

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?

Thoughts on mammograms and false positives

There has been a lot of controversy in recent years about the benefits of mammography and false positives. I read Dr Susan Love's take on how "Mammography is like the TSA" and the comments left by women. It made me think.

I started having annual mammograms at age 22 because of a benign fibroadenoma so I am sort of out of the discussion. My breast cancer was discovered 23 annual mammograms later at age 45. I went to all those mammograms without any concern until the one in 2007 (and if you are trying to figure out how old I am, currently I am 37) which turned into an ultrasound, a lot of denial on my part, followed by two surgeries, chemo, radiation, and hormone therapy to where I am now.

But if it was me to do it all over again, at this point I would rather be over treated and have a few false positives along the way than to have a cancer missed. My cancer could not be felt in a manual exam. My benign one way back when could be felt. My subsequent benign fibroademona, six months after my diagnosis, could not be felt either due to scar tissue. But it was visible in an MRI and ultrasound.

If you think about it, we have a tool available to us that helps with early detection and that alone does equate to saving lives. Its like wearing your seat belt. If you wear it every day, you are making your best effort. But on the one day you need it when that car pulls out of a side road in front of you, you are saved.

Dr Love makes an analogy of a mammogram like TSA screening which I can understand as well. Any effort we can make to help us live more safely makes sense. You can opt out of wearing your seat belt at your own risk. You can opt out of your annual mammogram at your own risk. But there shouldn't be someone blocking you from access.

The risk for breast cancer starts to increase for women at age 40 so there is no reason to delay mammograms until age 50 - just because the risk is significantly greater. As Dr Love points out there are many types of cancers and each are different. She raises the question that we may need to reevaluate the goal for early detection . But until it is changed, I am sticking with my annual mammogram.

First mammogram at what age?

This will open up a new debate I am sure. A new study is due out today from Harvard showing that younger women should get mammograms. The thought process being start the screening younger to build better habits.

"This new Harvard Medical study looked at more than 7,300 women diagnosed with breast cancer. Just over 600 died. Among those who died, 65 percent had never had a mammogram.

Researchers concluded earlier screening could have saved lives."

An additional note is that half of the women who died were under the age 50 as well.

In 2009, research suggested that women should not get mammograms until age 50. That caused a big hoo-hah if you recall. Now they are suggesting that younger women, no age range suggested, get mammograms, so brace yourself for another huge debate.

The news just covered this story as well. The upside to starting mammograms at a younger age is deaths can be prevented. But how many women would need to be screened to save a single life? And how many false positives would be detected causing unnecessary stress and additional medical costs in the meantime?

I also question the increased cost burden on the medical insurance system. We complain about medical costs increasing but then we expect more and more screening tests. It is a careful balance to achieve - who should get screenings should probably depend on a patient's medical history.

Personally, I have had annual mammograms since age 24 because I had a benign tumor, and a cancer history, so when my breast cancer was detected at 45, it was not my first mammogram. But if not for that benign tumor, I would probably not have had a mammogram until at least 40.

Every patient is different so the advice should be discuss this with your doctor for now.

Cancer awareness

I received an email the other day reminding me about getting regular cancer screenings and awareness. I don't think I need much more awareness. I am plenty aware. And I get regular cancer screenings. And more than the average bear. I don't need any more awareness. I would prefer unawareness personally.

But with my  medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.

If you need any cancer awareness I'm happy to give some away.

Predictive risk screening

We have all heard about genetic testing to see if you are more likely to get an ailment or not. I am not sure if I would do that or not simply because I am not sure I want to know. I can look at my family history without a genetic test to get an idea of what I might get. Oh, but there were no cases of breast or thyroid cancer in my family....

Actually the vast majority of breast and other cancers are not caused by genetic or family history. They just happen. There are risk factors that are known but the real reason of why someone gets it instead of someone else is not really known. But there is a fear among women regarding getting breast cancer. A lot of women are just scared of it.

So even though we do not have the cause ironed out, a company, BREVAGen, has developed a predictive risk screening test to see if women are more or less likely to get the disease. And they are selling it.

'"The vast majority of women who get breast cancer do not have familial history such as first degree relatives with cancer. For those patients, BREVAGen allows me to make informed decisions based on their individual risk indicators and genetics"... "Determining the appropriate level of surveillance is critical for patient compliance, early cancer detection, and controlling healthcare costs. BREVAGen helps me identify those patients that benefit from a more intensive surveillance. This proactive approach might include breast MRI and/or the use of anti-estrogen medications, coupled with patient lifestyle changes, all focused on the prevention or early detection of breast cancer." 

BREVAGen is a clinically validated predictive risk test that more accurately identifies a woman's unique risk of developing sporadic, estrogen-positive breast cancer. BREVAGen examines a woman's clinical risk factors, such as their lifetime exposure to estrogen, combined with scientifically validated markers to determine each patient's personalized five-year and lifetime risk of developing breast cancer.'

Hmmm... so they are analyzing exposure to risk factors. But that does not give us a cure.This is part of the role personalized medicine plays in helping treat patients. I am completely for personalized medicine but I am not sure what I think a company making money off analysis of risk factors as opposed to finding a cure. Yes this will help in getting the right women early screening and allow for early detection. But does it help prevent cancer?  Not really. Does it help determine the cause of cancer? No. Does it prey on the fears of women who are concerned about developing breast cancer? Possibly.

Who owns that gene?

That depends on who you ask. Personally I find the idea that someone can own the patent on a gene which was created naturally in my body a bit creepy. Now the court is saying the same thing.  Here is a summary of what my tiny brain understands:

• The US Patent office has been issuing patents on genes for about 30 years.
• Myriad Genetics developed the BRCA 1 and 2 tests and patented the two genes.
• Anyone who wanted to perform a BRCA test to test for the breast/ovarian cancer gene had to pay a fee to Myriad
• People sued and a judge in 2010 invalidated the BRCA patents.
• Myriad continued the fight and it got to the Supreme Court (even though they are very busy with that healthcare reform stuff) threw out the case on the grounds of another case which said the laws of nature are not patentable.
• This not the final ruling as it returns to the district court for further ruling. So stay tuned...

Great, what I see here are a lot of lawyers getting rich off greedy companies (assisted by the Patent office) while patients, cancer research, personalized medicine, and genetic research. But I think the odds are in favor here that this will be throw out as they Supreme Court tossed it already. (Or at least I hope so because I believe patients should come first and corporate greed should come last.)

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.

Colonoscopy Sweepstakes

Who would have thought that Ozzie Osbourne would become an advocate for colonoscopies? Well he has after one' saved his wife's, Sharon, life. He started a sweepstakes where the winner gets flown to New York and gets a free colonoscopy and three day stay in the city. Well if you have been putting off this potentially life saving procedure, I'm sorry but you are running out of excuses.  Dave Barry summed it up  in one of the funniest columns I have ever read - basically none of us want a camera up there. Go enter at CBS Cares - deadline is March 30.

Rock on Ozzie.