Thursday, June 18, 2015

Mammograms At Age 40 or 50?

Normal (left) versus cancerous (right) mammography image
The topic of what age is best to begin screening mammograms has resurfaced--well, it really never went away. It has been around since the 70’s when research on the effectiveness of mammograms first began. It is a complicated issue entangled with other complicated issues.

I decided to write about this subject after I read a recent blog post by a former cancer patient, now cancer advocate.  Her post was written in response to an NPR (National Public Radio) article with the headline Congress May Be Forced to Intervene Again on Mammogram Recommendations. The blogger wrote of her disappointment in the NPR reporter leaving out some important facts. My interpretation of her viewpoint is that if Congress intervenes again it would be due to their failure to recognize the research and scientific evidence that screening mammograms starting at age 40 show more harm than benefit for woman of average risk for breast cancer.

The writer of the post gave several reasons women could be harmed by mammograms in the 40 to 49 age group. (You will find the reasons she cited plus a few others closer to the end of this post.) All have grown from clinical trial results and were interpreted by the United States Preventative Services Task Force (USPSTF). I found the reasons to be a weak attempt to persuade me that screenings should start at age 50 instead of 40 for women with no symptoms and no family history of breast cancer. I wondered if my emotional baggage from my own cancer diagnosis was tainting my ability to accept what the evidence was showing. So, I decided to do some research to see if I was missing something.

First, let me explain whose recommendation caused people to pay attention to this issue. It came from the United States Preventative Services Task Force (USPSTF). The Task Force is made up of a small group of doctors and others involved in public health. Their recommendations are considered by insurance  providers, health professionals, and now the Affordable Healthcare Act engaging in medically related decisions. According to

an April 1992 report said the USPSTF “was established in 1984 by the US Department of Health and Human Services to develop recommendations on clinical preventive services based on evidence from published clinical research. Guidelines issued in 1989 addressed 169 preventive services in 60 topic areas.” 
Their recommendation in 1992 concerning mammograms was “ . . . the USPSTF recommendations on breast cancer screening, which call for annual clinical breast examinations”-- doctor’s physical exam—“after 40 years of age, mammography every 1 to 2 years beginning at 50 years of age, and early screening of women at increased risk for breast cancer.” Somewhere along this timeline, screening was changed to start at age 40. Now, the pendulum is swinging back to the recommendation similar to that of 1992.

Since the Affordable Health Care Act (Obamacare) became law, insurance providers must follow any mandates given by this law. These mandates are spawned from the recommendations by the USPSTF. One of the mandates is insurance providers must cover preventative services. Mammograms are considered one of these services-- I would argue mammograms are not preventative unless preventative means stopping early death, but that is not what I am discussing here.  The USPSTF makes recommendations for those preventative services. (For example, the age to begin screening for breast cancer.) Based on the most recent mandates by the Affordable Health Care Act, insurance providers are currently responsible for the entire cost associated with screening mammograms in asymptomatic women starting at age 40. The United States Congress is the only reason this mandate was established. 

In 2009, age 50 was the magic year to begin screenings. Congress, in an effort to please constituents--I am guessing--intervened by passing legislation telling insurance providers to ignore the Task Force’s recommendation. Health insurance providers were then made responsible for continuing to cover screening mammograms starting at age 40.

The latest draft recently released by the USPSTF 

( ) basically stays the same as the 2009 recommendation. Both call for women to make a decision about a mammogram based on their particular circumstances; women should be informed about any benefits or harm done by the screenings; woman should understand that the benefits are small at 40 but increase as women age; the recommendations instruct doctors and insurance providers to begin screening mammograms at age 50. 

Because of the recent draft released by the USPSTF, the conversation concerning Congress intervening again has begun. Will they intervene? For political reasons, maybe; the USPSTF has kept the same “C” rating that caused such a stir in 2009. The “C” rating does not make it mandatory for insurance providers to follow the USPSTF guidelines to begin subsidizing screening for breast cancer at age 40—an A or B rating does. This doesn’t mean mammograms at 40 will not be covered; it means it is not mandated.

For a moment, let me take your thoughts in a different direction:

I think people being told by the media that decisions about their healthcare are between themselves and their doctor gives the false impression that they are in control. This is only true if the patient’s health insurance provider approves tests and or treatments requested, or that the patient has a lot of extra cash to pay for such services. For those people not able to pay out-of-pocket healthcare costs, the insurance provider is actually the one making decisions about which health related screenings and treatments they will cover, not the patient or the doctor. 

Now, back to the subject of this post.

What side are you on? The side wanting to keep mammograms starting at age 40 and paid for by health insurance providers because they DO find cancers possibly saving lives in that age group (even though the percentage actually found is low in some studies). Or, the side that says mammograms are not necessary for women in their 40’s due to: unchanged mortality rates, the density of breasts in this age group along with DCIS conditions causing over-diagnosis and over-treatment leading to unnecessary, surgeries, treatments and radiation as well as false positives causing unnecessary anxiety and biopsies resulting in billions of dollars spent.

One of the arguments that agitates me the most against screening mammograms starting at 40 concerns DCIS--Ductal Carcinoma In-Situ is cancer, or sometimes called pre-cancer, inside the milk-carrying ducts of the breast. Presently many people believe treating this condition leads to over-diagnosis and over-treatment. This confuses me because most breast cancers start in the ducts. DCIS is portrayed as a less dangerous cancerous condition rarely invading healthy tissue. I initially was diagnosed with DCIS—stage 0 disease that later became invasive and now metastatic. No one can convince me that this condition is not serious especially when science has not discovered which DCIS conditions will become invasive with the potential to kill. I have read the results of the research. My mind has not been changed despite mammograms not detecting my own cancer. I still think early mammograms are needed to diagnose DCIS and aggressive measures are needed once it is found. More sophisticated screening tools like digital mammography and MRI’s need to be used in this group—not just for women with symptoms. They are more accurate. Unfortunately, they are more expensive, so probably won’t be used in all routine exams any time soon.  Better diagnostic tools to find these conditions even earlier probably would increase the currently unchanged rate of mortality for the 40 year old age group. If it were you, would you care if you might have been over-treated but have no way of ever knowing because your cancer never recurred? 

As my research came to a close I reread this excerpt from the USPSTF draft.

“. . . screening mammography in women ages 40 to 49 years means that the USPSTF concluded that the benefit of screening mammography outweighs the harms in this age range, but only by a small amount. . . Women ages 40 to 49 years must weigh a very important but infrequent benefit (small reduction in breast cancer deaths) against a group of meaningful and much more common harms (overdiagnosis and overtreatment; unnecessary and sometimes invasive followup testing and psychological harms associated with false-positive tests; and false reassurance from false-negative tests). Women who value the possible benefit of screening mammography more than they value avoiding its harms can make an informed decision to begin screening.”

Did you catch that?--“benefit of mammography outweighs the harm”. How can that be? I had the impression from the blogger’s post that started my investigation that mammograms should begin at age 50 was due to harm being greater than the benefits. Then I read the excerpt above and realized the more harm rationale is not quite what the recommendation says.

There is only one reason that stands out to me as the most legitimate reason women may one day have to wait until age 50 to be screened—costs. Costs are not one of the Task Force’s considerations. The other 8 reasons seem like an exercise in obfuscation when the debate should be about the financial health of insurance providers. (I am not suggesting here that insurance companies are evil.  I personally could not begin to pay for my cancer treatment. Blue Cross Blue Shield has always been exceptional in their customer service and efforts in helping me get the care I need.) I can't help but feel that trying to convince people that early screening causes harm, although may be true to some degree, may not be the driving force behind the age change. It sounds better to the public than “well . . . we can’t spend the money on you because there are simply not enough of you that this helps.” It is a cost-benefit issue not a harm-benefit issue. Money does need to be spent where it does the most good for the most amount of people without crippling an insurance provider financially. Unfortunately, some of us will be on the losing end. 

This disease is complicated. There is no way to tell exactly which women would have lived cancer free lives if they had gone with a more conservative treatment approach after their diagnosis. Sure, politicians don’t want to seem like they hate women by not forcing insurance providers to pay for screenings. Providers don't want to give the appearance they are not interested in helping people and are more worried about profit. The reality is insurance companies providing financial assistance to their clients must spend money where the most people are helped. Money is a factor in all decisions, so is saving lives. Sadly, there is a limit to both.

Biopsies and surgeries do hurt and cause anxiety, but nothing compares to living with stage IV cancer. So even with the evidence that the benefit of mammograms in this age group is small, I still believe mammogram screenings should start sooner rather than later whenever possible. Your life could be the one depending on it.

As I said in the beginning:  This is a complicated issue.

Friday, June 12, 2015

Expectations and Low Platelets

Maybe my expectations about what I think a nurse navigator's job is, of how I think my oncologist should respond to my needs as her patient, or of what my former oncologist should do concerning me are simply too high. Maybe my disappointments with them should be explained away by saying "they are only human". I don't mind forgiving them for an occasional seemingly obvious lack of concern for my needs, but how many should be allowed?
CAT scan machine - from Bing images

On June 3rd at 9:00 am, I had the unpleasant experience of listening to that big white machine tell me to "breathe in" and then "breathe". Yup, I had another CAT scan. There was no pain involved except the needle prick through a vein accessed to enable fluid to be sent inside my body to highlight any areas of possible concern. The process went quickly, like the last time, and away I went to wait for the results.
I know there are several steps and people to pass by before the results ever reach the desk of my oncologist. Sometimes this occurs quickly; other times it does not. I also know my oncologist as well as others involved in my treatment have other patients to care for besides me, so I am never one to demand that I be taken care of first. I do have my limits, though, about how long I should wait.

June 3rd turned into June 4th and eventually I found myself on Friday at 4:30, June 5th, with no information about my scan. Monday, June 8th, was my next treatment appointment. If something was seen on my scan that would indicate a treatment change then there was no reason for me to travel two hours to find that out. I would be sent home only to return at a later date because insurance approval for the next treatment chosen does not have a fast turn-around time.

I made it clear fairly early in my treatment that I wanted to be notified of all scan results before my next scheduled appointment. What could possibly be the problem?

At 4:30 on Friday, I was anxious. I sent a message using the new message system at my treatment center-- nothing. As the clock ticked to 5:00, I decided to text my nurse. Not too many minutes later I received this:

Waiting for doctor to report. Soft tissue of neck and abdomen appear normal. There is one nodule in lobe of rt lung that was 3mm increased to 7mm.
There were several texts back and forth between us. I was trying to process all this information while in the grocery store with 3 of my children. It is hard to see labels with tears in your eyes.

The nurse didn't think there would be a treatment change, but ultimately that decision was up to my oncologist. I was not to cancel my Monday's appointment.

At least she responded to my text. But why did I have to initiate the conversation?

At home, I reread every scan report I have had over these two years. I convinced myself that this one nodule suddenly being seen after several clear scans may in fact be scarring after a childhood infection or perhaps inflammation left over from that illness. I knew I had at least one of these nodules, so perhaps that is all it was. This perked me up a bit. Life continued.

Monday arrived and after waiting for my name to be called, my husband and I were seated in a room I have been in numerous times. Not too long after we made ourselves comfortable, a knock came and in walked my oncologist. Greetings were exchanged. She walked to the sink and washed her hands as is always the procedure. While she dried her hands with a paper towel, she began.

"There is a nodule that may or may not have grown 4mm. I compared this nodule to a scan you had in April 2013. Then, it measured 6mm. I don't think this is concerning."

She explained again to me the nature of a CAT scan; A 2mm picture is taken, and then a 2mm picture is not taken. The machine continues dissecting in this way until there is no more tissue to scan. Since there are some missing parts, the parts are put back together to make an image that a radiologist can read. Because of this, there is some guess work done on the part of the person viewing the scan. This means what appears to have grown 4mm may or may not have grown at all or was always that size but not seen before.

She alerted me she would have the in-house radiologist look at the scan to get their opinion of the nodule. The radiologist that produced this report was located in the same facility I had my scan. That one is close to my home. My doctor wasn’t concerned about the nodule and believed it most likely was not cancer but one of those harmless nodules.

Waahhhooooo!! I can relax . . . for now.

With that out of the way, she confirmed my platelets were still low. Three weeks ago my platelets were at 77 or rather 77,000. My current treatment drug was reduced by 20% so I could be treated. On this day my platelets were 82,000. An improvement but not significant enough to be receive treatment. My doctor wants to see my platelets at 100,000 so I can have my drug given at full-dose. The plan was for me to have my blood count done in a week (locally) and if the platelets reached that magic number of 100, I would have my next treatment the following week.

Before our conversation closed, I asked about being notified about my scans. Why she asked if I wanted to be informed of any bad news before an appointment baffled me. She did just have a baby in January, so since I didn’t see her a lot during those last few months of her pregnancy, I will give her the benefit of the doubt that she somehow forgot. Did she? I doubt it. Two years of trying to build a relationship with her seems to have failed.

First she explained the nurse did not like to give bad news— that had already been established before and at this point I thought “I don’t care.” Since the nurse had not heard from her and did not want to interpret my scan without hearing from her first, the nurse wanted to wait before I was contacted. Then she told me that most people prefer to be told about scan results in person. I suggested, as a way to make this easier, the nurse could text me or leave a message on the new message system for the hospital.

“No”, she said, the nurse “would rather speak to you in person.”

The conversation had become uncomfortable for me. I kept thinking, “Why didn’t the nurse call me with that simple update just as it was relayed to me now?” The even more important question was why didn’t my doctor call me? Could my expectations be too high? Somehow I think we will be re-visiting this conversation in the future. UGH!

Next issue—blood-work.

I hope everyone has someone who can manage their care when they are too sick and weak to do it themselves. If I was not able to care for myself and had no one to help me, I would not be getting blood-work done today.

During our recent meeting, my oncologist had told me to get my blood-work done locally either by my primary care doctor or my former oncologist. This showed she was at least aware of the distance I had to travel to see her. This way I would not drive so far with the possibility of being told I could not have treatment. With that plan in place, I was given no further guidance of how I might get this done. (My primary care doctor retired last year. I have not found another.) Navigating our healthcare system seems to me to be far more difficult than it should be. There are locked doors everywhere. Doors that can only be unlocked by other healthcare professionals. So why I was sent out into the jungle to do this on my own, I have no idea. 

I called my former oncologist’s office. After going around and around with the a nurse about who I was and what I needed, we finally decided I had to get an order sent from my present oncologist’s for this simple request of getting my blood counts analyzed. I worked that out. It took me staying on top of the request, but it was finally done. Soon a call came from another nurse to set-up a time to get this done. Time set—yeah, all done.

Well . . . nope. Not quite.

My phone buzzed. I answered and soon discovered my old oncologist decided not to allow me to have blood work done in his office because he hasn’t seen me in a long time; translation—I don’t think he knows who the hell I am. So, I am told I have to go elsewhere. It is late Thursday. This blood work is supposed to be done on Friday per the request of my oncologist. I verbalized my frustration to the nurse on the other end of the line. She was a bit gruff in the beginning, but actually turned out to be one of the nicest I have encountered in a while. Maybe she understood my frustration. She suggested I go to Labcorp.

“They may take walk-ins,” she said.

My next thought was to go to Medac-- oh wait, I am sure they will need an order from my oncologist.

After learning, again, life is never free of complications, I sat down in a Subway restaurant and opened my computer to search for places I could have blood work done on a walk-in basis. My daughters and I were away from home and it was around 3:30, so I thought I better start to figure out what I was going to do.

My search began, but was soon interrupted by the buzz of my phone.

“Oh,” I said. “Thank you. And, tell Dr. A. I really appreciate this.”

My former oncologist had changed his mind, again. I am not sure what happened on the other end of the line, but I didn’t need to concern myself with that cause a door had opened for me. I was getting my blood test done!

So, there it is. My expectations of how my doctors and nurses involved in my care respond will always be high. I am paying them for a service am I not? Unfortunately, I feel certain I will be disappointed again. Thankfully, I have jumped some hurdles for now. I see the next one coming at 3:00 today. Let’s hope I clear it. 

Oops, I knocked it down. Platelets have only risen slightly to 86,000. Disappointing.

Monday I will find out for sure (if I receive a call) if treatment will be delayed another week. Darn platelets . . . grrrrrrr.