Mammograms Starting at 50? No Breast Self Exams? Sexist.

By now everyone has heard the new guidelines by an influential panel of "experts" -- the U.S. Preventive Services Task Force -- that mammograms should start at age 50, not age 40 as the American Cancer Society and American College of Radiology still recommend.

According to a recent New York Times article and every other source on this planet, this panel's reasoning goes something like this: 1) the radiology involved with the mammograms may be harmful so fewer mammograms should be encouraged by doctors 2) Mammograms find a lot of benign stuff, causing women needless biopsies and worries and 3) There's no need for breast self exams.

And now, women are left wondering what they should do. Women are scared and making that fear known.

First of all, the American Cancer Society stands by its recommendation, so hopefully that will quell a lot of fears. Best case (and hopefully most likely) scenario: nothing changes despite this panel's recommendations.

Worst case scenario: The ACS listens to these fools and changes its guidelines.

Let's discuss the worst case scenario.

I'm in no position to be affected by these new recommendations, as my double mastectomy with reconstruction exempts me from mammograms. However, I can tell you what I might hypothetically have done if I were in my 40s, a candidate for mammograms, and found out I could no longer get routine mammograms every year.

Hypothetically speaking, that is.

I might:

-- Tell my doctor that my mother and/or sister had breast cancer. (Yes, lie)
-- Tell my doctor that I found something in my breast and need it checked out. (Yes, lie)

Then again, I might not. I'm not advising you to lie, you see. I'm just throwing ideas out there -- brainstorming, if you will.

Finally, I will end this blog with a letter to the task force that recommended all this no-routine-mammograms-until-50-and-no-breast-self-exam nonsense in the first place.

Dear Task Force:

You don't want women to get routine mammograms in their 40s because they cost money and medical effort. The amount of radiation women receive during a mammogram is minimal. Truth is, you don't want women to get "needless" biopsies because, well, it's a whole lotta trouble (and $$) to do a biopsy.

By the way, isn't "needless biopsy" an oxymoron? Isn't a biopsy necessary to assess whether there's a malignancy? If a suspicious growth were benign, isn't it good that a biopsy was done to convey that information? If the growth in question were malignant, isn't it good that a biopsy was conducted?

You don't want women to do breast self exams because they may choose to get those needless biopsies and choose those needless mammograms, which cost money. And some medical experts even claim that some cancers will never be deadly, but they are benign malignancies.

If you or a loved one found a lump in the breast, would you take comfort in that whole "benign malignancy" hoopla and do nothing? Or would you want a biopsy? Would you want to know whether that lump was cancerous and, if proven to be malignant, would you just leave it in your breast and carry on with your life?

Finally, I don't see any guidelines changing for men any time soon. If your panel thinks women should forfeit their right to routine annual mammograms in their 40s, then the panel should level the playing field and tell men to wait until they are 80 to get a routine prostate exam.

Sincerely,

Beth L. Gainer

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.


She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Breast Cancer Awareness Year

While Breast Cancer Awareness month has come and gone, it is really vital that people be aware of this devastating disease year-round. Breast cancer affects everyone because, although the majority of its victims are female, the disease is also devastating to husbands, fathers, sons, and any man who has a woman in his life. And one out of 100 men get breast cancer, too.

And so, here are my tips for year-round health-care vigilence. Some have been stated before in my previous blogs, but one cannot emphasize them too much. So, here they are:

• Do a breast self exam every month. This includes not only feeling for lumps, but doing the "mirror test," which is where you look in a mirror, raise your arms and look at your breasts to ensure there are no unusual flags, such as dimpling, puckering, inverted nipples, etc. It was the mirror test that saved my life.
• If you find something unusual, even if you don't think it's a big deal, get it checked out as soon as possible. It's better to have it checked out and it be nothing than not to check it out at all.
• Fire any doctor who tells you that you are too young, too old, to nice, etc. for cancer. They are not taking your concerns seriously.
• After a mammogram, ask the technician and the radiologist if your breast tissue is dense. If the answer is "yes," then it's most likely difficult to see any possible abnormalities. Go to your primary care physician, or your gateway doctor, to get an order for an MRI or ultrasound. 
• Eat right and exercise. Healthy living really doesn't prevent cancer, but it does help promote good mental and physical health. And that's always a good thing.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

'You're Too Young for Breast Cancer'

You need to be taken seriously, no matter your age. As someone who went through breast cancer at a young age, I can speak to the younger person's perspective. I'm using my experience, but you could substitute any condition, and the activism involved is the same process.

Quite a number of doctors told me I was too young for cancer, even while a tumor was growing in my right breast. (Trust me, I fired all these jokers, replacing them with real doctors who listened to my concerns and took me seriously.)

I had a negative baseline mammogram only a few months before I found my own breast cancer through my regular monthly exam. The mammogram report was ominous: it said it was negative for any abnormalities, but that my breast tissue was exceedingly dense, so this was a limitation. (Dense breast tissue looks white on a mammogram. The problem, especially for many younger women, is that tumors are also white on a mammogram.)

Looking back, I wish I hadn't passively allowed that good test result lull me into a false sense of security.

Because my tumor was still there.

A few months later, still thinking I was healthy, I went to my trusted gynecologist for my routine exam. He found nothing wrong, so thumbs-up! When I questioned the "dense breast tissue" comment on the report, he assured me that I was too young for breast cancer.

It wasn't until I did my monthly breast exam a couple of weeks later that I saw a slight dimple in my right breast. I was scared, but I kept reassuring myself with his words that I was too young for cancer. But just to be on the safe side, I went to him for another exam and told him what I found. He couldn't find it at first, but then he felt a slight lump and said it probably was nothing, but that he'd refer me to the hospital's breast center just in case.

And a technician with the vision of a hawk found the tumor -- despite the whiteness dominating the X-ray.

Younger women (and any women with dense breast tissue for that matter) have more difficulty in with the accuracy of mammogram than their older counterparts. Don't get me wrong; mammograms are a must and still are the gold standard. But with this test, older women tend to have the advantage. As women age, their breast tissue is less dense and shows up as black on the X-ray, so a white tumor lights up like a torch.

So here's my advice to all readers out there: be wary of any doctor who tells you that you are too young for certain conditions. Young people get sick, and a visit to any children's hospital should humble the most dismissive of doctors.

I was grateful to this doctor for referring me to this specialized breast center. That saved my life. But he didn't save my life; I did. Because he was lulled into complacency that younger people -- especially physically fit ones with no history of major illness -- don't get breast cancer, he dropped the ball.

So I dropped that doctor.

It took my vigilance to save my life.

That being said, medical science needs to change to accommodate younger women and others with dense breast tissue. Doctors should refer such women to MRIs and/or ultrasounds, which pick up what a mammogram might miss.

Mammograms are still very useful and have saved many lives, which is why they are still the gold standard. But as medical science changes and as the profile of the patient changes, diagnostic testing must also change.

We are so inundated with information on mammograms, that we as a society have lost sight of those women with dense breast tissue. And perhaps insurance companies prefer the mammogram to the MRI because the latter is more expensive.

But why should that matter? Because saving a human life -- whether by mammogram, MRI, or ultrasound -- is priceless.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Who's Afraid of the Big Bad Medical Administrator?

Answer: Not the patient.

As covered in previous blogs, when navigating the medical system, bully/incompetent doctors are just one of the many hurdles you face. Other huge hurdles that we patients face include those administrators whose job, it seems, is to make life difficult for us.

As if dealing with illness and life-threatening conditions weren't enough.

I am beginning this posting with a caveat: most of the medical staff I've encountered have been helpful and kind. Most of the time, my doctor visits have been made more pleasant and relaxing -- all because of the administrative staff -- such as receptionists, medical assistants, records people -- who do have a difficult job and often have to deal with rude patients.

However, it's more fun for readers if I trash the administrators who have overstepped their bounds.

And more than anything, I'm hoping that this posting can help you stand up to rude administrators who seem bent on placing hurdles in your way or being rude and inappropriate during your visit to the office. I speak from experience and will discuss two memorable altercations I had with administrative bullies.

Ironically, I'm grateful for these experiences because they taught me the incredible power patients have.


Show Me the Money

When dealing with a potential or existing medical problem, the last thing you need to hear is a medical staff member discussing money matters with you. This type of insensitivity to your needs is unacceptable.

In my case, I was in my surgeon's waiting room only a few days after being told that an MRI revealed something suspicious, and I was scared -- like crap in your pants scared -- that it was a recurrence. Fresh in my memory was my great friend dying of breast cancer only a few months before, and I was deep in thought, wondering if I would share the same fate. My surgeon was going to examine me and schedule a biopsy.

The receptionist interrupted my panic-stricken what-if scenarios by calling me up to her desk. Imagine my disbelief when she looked in my tear-reddened eyes and informed me that I owed some money and would I like to pay it now or later. She started talking in a not-so-low voice about the amount I owed. In shock, I stammered something about being billed later. I couldn't psychologically deal with one more stressor.

I sat back down, crushed. I was embarrassed, wondering if others in the waiting room overheard this conversation. The tears of humiliation stung my sleep-deprived eyes.

Then my fighting spirit took over. I wanted my dignity and self-respect back. I walked back to the receptionist and told her in a not-so-low voice, "You know, I am grappling with a possible breast cancer recurrence, and I can't believe you have the audacity to discuss my bill at a time like this!" Before she could stop stammering, I added, "You and anyone in your office are never, ever to discuss anything bill-related with me in this office."

Now it was she who was crushed. I turned around abruptly and got back to thinking my fate. She and the rest of the administrative staff treated me like gold that day. One would think I was a celebutant. And I felt empowered, even though I was bracing for terrible news.


The Dreaded Record Keeper

In my posting A Train Car Named Quagmire, I discuss how I fought to get records transferred from one physician's office to another. Records departments simply amaze me. They are able to provide services and obtain records lickety-split when a doctor requests them, but not when a patient does.


In my case, the enemy was the center where I had follow-up mammograms and any pre-surgery labwork. Interestingly, whichever individual happened to be at the front desk was always rude and cold to me. I found it intimidating and passively tolerated their mistreatment and utter disrespect. Luckily, the technicians were nice, but the technicians unfortunately had nothing to do with ensuring records were delivered when they were supposed to be delivered.

My mammogram films and report were supposed to be ready for me to pick up before I saw my doctor who always wanted to see them during my visit (I did call the records department ahead of time and followed all the protocols). Yet, about 50% of the time they weren't ready, and I had to go to the doctor sans mammogram, which arrived a few days later.

And for someone who has been through a cancer experience, waiting a few days is like waiting an eternity.

I called the center to complain about the mishandling of these mammograms and, after speaking to several impolite personnel, I finally got a friendly staff member. I told her that since I already had breast cancer and very dense breast tissue, my mammograms needed careful inspection by my surgeon on time and that such mishaps could one day cost me my life.

She said, "Aw, honey, you're not likely to get breast cancer again." I volleyed back: "How do you know that? You can't tell a patient that! It is vital that your office ensures prompt and accurate delivery of my mammogram films and results." (Turns out that years later after my preventive mastectomy and reconstruction, the labwork indicated I had oodles of precancerous cells and would've had a recurrence in a few years.)

I asserted myself to my surgeon -- I politely insisted that, with my history of breast cancer, it wasn't prudent for me to to get follow-up mammograms at an unreliable place and from now on, I wanted my mammograms done at the hospital's far superior breast center. The stakes were too high, I explained, to allow this center to determine my medical fate.

He agreed, and I never had such problems again. Victory!

Fast-forward a few years later. I needed to go to this center for pre-surgery bloodwork. I was getting my preventive double mastectomy with reconstruction, so it was a stressful time for me. My doctor sent the center an electronic referral so I wouldn't need a hard copy. So I showed up a week before surgery, as directed, without a hard copy referral.

By now I was prepared for the staff's lack of respect, and I was determined to not tolerate abuse.

Sure enough, the receptionist rudely insisted I needed a hard copy referral -- even though she had printed out the electronic version! She rudely directed me to an intake person at another desk, who coldly said the center couldn't do labwork without a hard copy referral.

I told her that I was having major surgery in a week and needed the labwork ASAP. She responded that the center would do the labwork, but only if I signed a form agreeing to pay for the procedure should my insurance not cover it because the referral was electronic.

(No, it doesn't make sense to me either.)

She shoved the form toward me, and that's where my civil disobedience kicked in. I told her, "You know, every time I come to this office, I am treated rudely and with disrespect. I demand respect. I am having major surgery next week, and I followed the correct protocol. So I refuse to sign it."

Her eyes widened in shock, and then she scribbled something on the form. I asked her what she was writing, and she said "Patient refuses to sign form." Pleased with my self-advocacy, I said, "Good!"

I got my bloodwork that day and didn't pay a cent.

When I relayed this interaction to my friends, they said they never knew they could refuse to sign such a form.

Well, now they -- and you -- know. While we want to be civil and treat medical staff with respect, when we find ourselves bullied by them, we don't have to passively comply.

Your voice needs to be heard, and you simply cannot tolerate disrespect from administrators.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris University Illinois in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Don't Be Complacent

If you have a medical concern, please get it checked out as soon as you can. This is a simple idea, but it is one of the hardest things we can ask of ourselves.

We may not follow up immediately on a medical concern because we are afraid our worst nightmares will come true. It's much easier to lull ourselves into a false sense of complacency -- that whatever we are worried about is a figment of our imagination, or that we are just hypochondriacs afraid to waste a doctor's time with false alarms.

The truth is, it is easy to choose complacency when we are afraid. This is our default reaction to potentially disturbing news.

I chose two weeks of complacency after I found a very subtle dimple on my right breast during one of my routine monthly breast exams. During these two weeks, I had no peace. I kept telling myself that I wasn't really seeing anything. Wasn't that dimple always there and I failed to notice it? Wasn't it just a mirage?

Then I would cry for hours, convinced it was cancer. Then I remembered that a recent mammogram was negative and my gynecologist had given me a clean bill of health months prior. He did the breast exam and found nothing, I reassured myself, so I was just fine.

Besides, a doctor told me I was too young for cancer. I was fit and had a healthy lifestyle. I was becoming jubilant over my self-imposed diagnosis of "healthy," when a fear overcame me.

What if it really is breast cancer?

My first instinct was to tell myself that ignorance is bliss. The idea of having cancer was too terrifying to imagine. But when it comes to a possibility of any life-threatening condition, the whole ignorance-is-bliss mantra is a lie.

I realized that I had no choice but to investigate it. If it weren't cancer, my mind games would stop and I'd be reassured. If it were cancer, it would kill me if I just ignored it. At least being proactive would give me a shot at living.

So I made an appointment to see the gynecologist, who, still unconcerned and who had trouble even finding the area in question, wrote me a prescription for a mammogram at my hospital's breast center, just to be on the safe side.

Turns out, it was cancer.

And that's when I first learned the power of self-advocacy. Despite the harsh treatments and future surgeries, I am alive now -- and blogging up a storm -- because I opted to be proactive.

Some people believe that "courage" is defined as "being fearless." I disagree. To me, courage means being afraid and acting anyway, even if that means facing the darkest of truths.

Through my breast cancer journey, I realized that I am very courageous, but I realized that this is a true quality of ordinary people like me -- to do extraordinary things that are often the unthinkable.

So if you or a loved one has a medical concern, call the shots and get it checked out. It may just save a life.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.