The ABCs of HMOs

Posted on: July 1st, 2009 by
4

Awhile ago, I mentioned that I would address the topic of HMOs and why they are not necessarily the enemy of quality medical treatment. This is the topic of this posting.

Disclaimer: I can only speak from my experience and about my particular HMO, and I am not a paid promoter of HMOs.

OK, now that we got that out of the way, let’s delve into the world of managed care, as well as how you can best make the HMO work for you.

Advantages of HMOs over PPOs

As one of the people lucky enough to have medical insurance, I am very happy with my HMO. Some primary care physician groups do not have quality doctors, I’m sure, but I selected my primary care physician based on a group affliated with a first-rate hospital.

Unlike the horror stories you hear in the media, my HMO doctors are outstanding.

Through my HMO, I was able to get all my cancer treatment — chemo, surgery, radiation, etc. — free of charge. Trust me, I saw the statements of all the charges I would have owed — enough to give anyone heart trouble and a new set of specialists — and I know that with a PPO I would’ve had to pay a certain portion of it, and a small portion would’ve still been a ga-zillion dollars.

Also, what PPOs don’t emphasize is that they have a ceiling, where they won’t pay anymore after a certain amount of funds are exhausted. The cap is a high amount, so it’s not a problem for routine problems and conditions, but cancer treatments and reconstructive surgery would have driven a sledgehammer through a PPO’s ceiling, and expenses would’ve gone through the roof.

HMO: That’s A-Okay

Another little-known fact is this: many HMOs will cover a medically necessary procedure done by out-of-network doctors — if the primary care physician, also known as the gateway doctor, advocates on your behalf. That is why it’s so important to have an excellent relationship with your gateway doctor and to hire the best one for your needs.

When you have an excellent gateway doctor, the HMO experience can be wonderful. That’s the key: finding and hiring that gateway doctor to help you help the HMO meet your needs.

In my situation, I needed a double mastectomy with reconstruction. Because I was young, fit, and active, a double tram flap procedure was not an option because too much abdominal muscle would be removed, and I might not ever be able to sit up on my own. According to my doctors, the procedure I needed to reconstruct both breasts was a Diep flap, a more cutting-edge surgery (pun intended), designed to preserve as much of my abdominal wall as possible.

One doctor of reconstructive surgery who was recommended to me by many medical professionals was out of my HMO network, although affiliated with my hospital. I wanted him as my surgeon, but as he was out of network, my gateway doctor said that in order to make a case to the HMO that I needed the skilled Diep flap surgeon, I had to first see the in-network plastic surgeon to ask his recommendations. While I dreaded this pain-in-the-butt step, it had to be done, explained my doctor, as she and my oncologist were drafting their letters on why I needed the Diep flap procedure.

Here was the key on which my fate would turn: If the in-network plastic surgeon could do the Diep flap, then he would be my surgeon. However, when I saw him, he said I needed the Diep flap, but he is not skilled in this arena, and I’d need to go out of network. He drafted a letter on my behalf to the HMO, stating that I needed this procedure that he did not perform.

A few weeks later, the HMO came to its conclusion: It would cover the ENTIRE cost of the Diep flap, hospital stay, and all followups as needed. And, because my surgeon needed a doctor skilled in this type of surgery to help him (also out-of-network), the HMO paid for that additional surgeon as well.

Cost to me: 0 cents. Cost to my quality of life: priceless.

Whether you have an HMO or PPO, though, the key is to have the right doctors in place, so if a time of medical need arises, they will advocate for you.

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/.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Clueless in New Jersey and Elsewhere

Posted on: June 26th, 2009 by
4

According to NJ.com, which has posted an article from Politico.com, dated June 25 — before Farrah Fawcett and Michael Jackson died — sad stories about people’s personal battles are just too…well…sad.

The story (the link to the full story below) opens describing how Rep. Rosa DeLauro of Connecticut shares her personal battle with ovarian cancer and how Indiana Senator Evan Bayh talked about his mom’s death from breast cancer.

Then, only a few sentences later, the “news” article — and I use the term “news” lightly — says:

When it comes to the debate over health care reform, the personal medical narrative has become something like a key card: You can’t get in without one. Advocates on both sides of the health care debate are stockpiling real-life stories from average citizens. But in the world wrought by talk-show confessionals and reality TV — and in a political environment where an admission of economic pain and suffering may score some points — members can be counted on to invoke their own medical sagas as well.”

Whaaah??

Now let me make sure I’m understanding this correctly: people’s personal narratives are equated to talk-show confessionals and reality TV? So, like, when I was throwing up from chemo, that was equivalent to me being on yet another Jerry Springer “Who’s Your Daddy” saga?

Since when has fighting cancer, or any condition for that matter, become a “saga”?

The personal narrative of one’s own experience with illness or discussing a loved one is one of the most refreshing concepts to emerge. Everyone is telling his or her story lately — thanks to vehicles like the blogosphere — because the truth is this: many politicians don’t care much about healthcare topics….until it hits home for them personally.

In fact, many people are walking around clueless all over the place, denial-zombies — until illness strikes their loved ones or themselves…or celebrities. But even then, as I discussed in a previous blog, denial is this fog that creeps over even those whose family and friends have an illness.

Here’s why the personal narrative is so important: because people afflicted with an illness or condition are NOT heard by society. That’s why the personal narrative has become so popular. People want to hear the stories of those who are suffering — because it keeps us human and humane, and for those of us who have struggled/are struggling with a condition, it reminds us that we are not alone in our suffering.

Where’s the “saga” in that?

Oh, and later in the article, it gets real good when NY Congressman Peter King says that “…everyone has a story sadder than yours…we are in the age of Twitter, where we are supposed to let the world know what you’re doing every day,…but I have a certain zone of privacy not just to protect yourself but to not be imposing on other people.”

Yeah, Mr. King, you are imposing your pro-denial views on me, and I resent it.

But to give this online publication credit, it avoids becoming strictly a propaganda piece by quoting Molly Daniels, Vice President Advocacy Field, for the American Cancer Society Action Network: “What I’ve heard time and time again and what we’ve heard throughout the organization — people want to share their stories, so it doesn’t happen to other people.”

We need the personal narrative because we live in a culture where people are so consumed with brushing ugliness under the carpet, that they don’t want to hear the voices emanatiing from underneath it.

I think I’ll Twitter now, Mr. King.

http://www.nj.com/us-politics/index.ssf/2009/06/health_care_debate_prep_sad_st.html#post

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/.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Meet Alicia (aka Dr. Mom)

Posted on: June 25th, 2009 by
3

I highly recommend the Welcome to My Planet blog (see link below). Alicia is a mother of four, who is a great writer and has deeply touched me with her excellent writing. She mixes eloquence with humor, and I have laughed and cried reading her postings. She writes about anything and makes even the most seemingly mundane things highly interesting.

Alicia has four children; her oldest daughter has autism. She also discusses this with amazing bravery and candor.

I am an avid fan of hers. Please check her blog out. You will love it:

http://welcometomyplanet4.blogspot.com/

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Sense and Sensibility — and Courage

Posted on: June 21st, 2009 by
2

People who fight any sort of condition — which is most people nowadays — have to reside deep in their hearts to find that all-too-rare commodity: courage. Those with medical afflictions have to find the best advocates: ourselves.
My postings have focused on how to navigate the medical system, which is a never-ending gauntlet of doctors and medical tests. This posting is about following your senses to know which family members and friends to “fire” if the relationship is not worth saving, as well as the courage to deal with those who lack sensibility, or empathy.

For me, living through the breast cancer experience had been such an enormously challenging undertaking that I would find myself crying in the car, sobbing in the bathroom, and bleary eyed half the time, but all the while, I knew that deep down inside, I had carte blanche to rely on the best advocate in the world: myself.

As difficult as it is to listen to doctors who won’t listen to us, it is much harder when the people who won’t listen to you are closer to your heart. I’m speaking about people who are supposed to love us — family and friends — but they abandon or reject us during our time of greatest need. These individuals’ lack of sensibility hurts us more than they know, or care to know.

When I was diagnosed with cancer and started making those dreaded phone calls, most of my friends and family were very supportive and had great empathy.

For this, I will always be grateful.

But the “C” word is so overwhelming to some, that the pain of a friend or family member rejecting me was too much to bear. One so-called friend told me he was “honored that I felt I could confide in him,” and then I didn’t hear from him for four months. Family who I thought would come to my aid instead refused to call me or denied my symptoms.


Equally distressing are those who stay in touch with us on our journey but out of touch with our basic needs. These individuals choose denial over the truth, in short minimize our suffering instead of acknowledging our voices of pain and anger and grief. This decision isn’t out of malice; instead, it based on pure selfishness — so they don’t have to deal with the emotional and physical “mess” that comes with illness.

And as anyone with a serious ailment knows, illness is messy — physically, emotionally, and psychologically. And, unfortunately, many people don’t want to deal with the mess. Instead, they like to put things into nice, tight little packages, where they do not have to deal with the pain of their loved ones.

I’ll give a few examples:

**One relative called one of my surgeries a “procedure,” instead of what it actually was: surgery.

**One “friend” used my vulnerability to try to convert me to her religion. (Didn’t work, so sorry.)

**Other relatives refused to call me, talk to me, or visit me. I had become somewhat of a medical pariah.

**A few people would allow me to spend hours in the hospital waiting for them to finally show up. They threw me a bone by doing some things around the house to “help” me. When I expressed my anger at having to wait for them so long to visit, they essentially said I was ungrateful.

**To this day, when I talk to a couple of family members, they do not acknowledge the cancer. One person said, “You are OVER it,” while another can’t even say or listen to the word “cancer.” For this latter individual, all I can say is the following: “cancer, cancer, cancer, cancer, cancer.”

A two-syllable word that rolls easily over the tongue, but is so difficult to digest.

This is why being your own self-advocate is so important. If a person believes that such toxic individuals will lift him or her up, then he/she is the one in denial.

It’s time to call the shots in how we live our lives, and that means surrounding ourselves with supportive individuals, being supportive people ourselves, and confronting/firing those so-called well-meaning individuals who deny the very essence of our conditions.

It takes courage to do so, but then again, fighting an illness does, too.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices’>http://www.amazon.com/Voices-Breast-Cancer-Companion-Strength/dp/1934184020/ref=sr_1_1?ie=UTF8&s=books&qid=1242657371&sr=1-1″>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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

7 Common Mistakes Patients Make

Posted on: June 12th, 2009 by
3

In the same vein as David Letterman’s Top Ten list, I am focusing this posting on 7 common mistakes patients make when dealing with the medical system. I chose 7 instead of 10 because a) 7 is a lucky number and b) I don’t think I could think of 3 more!

7. Allowing their jackets of a variety of doctor hues — taupe, gray, brown or white or any variation thereof — to intimidate you.

6. Not asking questions.

5. Accepting doctors’ explanations that are unacceptable.

4. Allowing doctors to determine your medical fate rather than taking ownership of it.

3. Allowing a doctor to rush through your appointment.

2. Not hiring and firing doctors as needed.

1. Being passive in your medical care.
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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Carrying the Cards You’ve Been Dealt….With Hope

Posted on: May 29th, 2009 by
2

This posting is about hope.

Patients need hope that they can be healed, that they can have minimal suffering, that their families are there beside them, etc. Many find solace in religious faith and/or in knowing that their loved ones are there to support them in time of a medical crisis.

It is a doctor’s responsibility to give you accurate information in a respectful manner and to offer some solace without sugar coating anything.

There’s no room for excess drama in a doctor’s office. That should be saved for Grey’s Anatomy and Dr. McDreamy or Dr. McSteamy, or whatever name he goes by.

Until this week, my hope in my bone health was faltering, all because of a pessimistic doctor who reviewed my dexa scan (bone density test) results as if he were an actor playing a doctor and as if he were full of knowledge.

Instead, he was full of crap.

Several months ago I had a dexa scan because I now have osteopenia, thanks to a faulty genetic line, premature menopause caused by chemotherapy — and, oh yeah, the chemotherapy itself, which harms bones. Despite my drinking milk, taking calcium supplements, and doing weight-bearing exercises and being athletically fit, I was still losing bone. So I was put on Fosamax once a week the year prior to this year’s dexa scan, in hopes that this medicine would increase my bone mass.

And the verdict was in! My bone mass went up significantly. I felt invincible, like a literate Rocky Balboa. But I am somewhat data challenged, so I went to a family practice doctor whom I used to like. My PCP wasn’t in that day.

He said, “These are significant numbers, but for a person as young as you, these are very, very bad results. And there’s nowhere for you to go but down.”

I was crushed. All I wanted was a glimmer of hope.

After all, bone density increasing is good news. Period. And yet, he reduced me nearly to tears. Was this the way Rocky felt when Apollo Creed gave him a good whack?

Defiantly, I told Dr. Downer that I endured surgery and chemotherapy and radiation, and I believed that I could continue to increase my bone density further because I’m so proactive in my health.

He stared at me blankly and said, “That’s not going to happen. No matter what you do, your bones are going to continue to deteriorate. As I said, there’s no place for you to go but down.”

I left depressed. Without hope. I figured — misguidedly — that there was no hope of building my bone mass, so there was no point in staying in shape. I did very little exercising, compared to the workouts I used to do when I thought they were benefiting me. But then, in a few weeks, I rallied, figuring exercise has other benefits, such as stress reduction, cardiovascular health, and its contribution to wellness. So I was back on the road again.

Flash forward to this week, when I saw my oncologist for my routine followup, who is dedicated and tries his best to give his patients hope without sugar coating anything. I don’t know what made me think of the dexa scan at the end of the appointment, but I told him I had gained bone mass this year.

My oncologist was so different from Doctor Grim Creeper whom I saw months before. My oncologist said, “Great! That is GREAT news!” I then asked him the question, afraid to hear the answer, but knowing if I must hear bad news, it’s best coming from him.

“So, is it possible that I can build even more bone mass in the future?” And to my shock he said, “Absolutely!” So I asked him with disbelief, “Really?” And he said, “Yes. It’s very possible.”

I had already started my jogging/walking routine before I saw my oncologist, but now I do it with much more hope and zest and a smile on my face. Next year’s dexa scan results are unpredictable, but I now have hope to hold onto — the hope that I can accept the hand I’m dealt, but also the hope that I can play the hand as well as possible.

Oh and about that first doctor — he’s so fired.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Those Nasty Gatekeepers

Posted on: May 23rd, 2009 by
3

Well, it’s that time of the year: the birds are singing, plants are flowering, trees are blossoming — oh, and for me, it’s doctor season.

This is that time of year when I have to put all my doctors in a row. On Tuesday, I see my oncologist. I believe I get a double whammy the following week, seeing my mastectomy and plastic surgeons. Luckily, I love my doctors, and I’m fortunate these are routine follow-ups.

However, some routines I can’t stand. I really don’t like going to doctors because it is so scary and I usually have to have a variety of activities to keep me from crumbling into one big fearball. (Curbing fear in a doctor’s office will be discussed in a future blog.)

However, the routine I hate the most is making appointments with those nasty gatekeepers: you know them — the dreaded receptionists and operators who were born just to make your life difficult. These people, given orders from somewhere to cut corners, or maybe because they enjoy making the patient’s life miserable, try to give you an appointment with a nurse’s assistant or a physician’s assistant when it’s clear you want and need to see the doctor. (Many receptionists and operators are nice and comply with your needs, but several are not, and these people are the ones I’m talking about.)

You have the right to see the doctor, not an assistant, if that is your will. And that means assertiveness and focus. After all, what is your insurance or your own pocket paying for?

I had such an incident just this week. I made an appointment with two of the three doctors with no problem. When it came to a final followup with the reconstructive surgeon, that was another matter. The gatekeeper figured it was a routine followup, so she could just send my case to some sort of “surgical assistant” I had never heard of or met. In the end, through my persistence and repetition, the gatekeeper complied with my request to see my doctor.

Here’s how the dialogue went (the names have been changed to protect the innocent and the guilty):

Me: I want to see Dr. Reconstruction for my final routine exam.
Receptionist: Well, the doctor’s schedule is limited, and he doesn’t do these type of routine exams anymore, so we’d have to give you a surgical assistant.
Me: What? He did my last followup. No, I need to see him. What days is he available?
Receptionist: Well, he’s in surgery a lot of Fridays.
Me: What about Monday through Thursday? Surely he must be available sometime. He told me specifically he wanted to see me at least one last time.
Receptionist: Well, our surgical assistant, Bambi, is very good and knows how to give an exam.
Me: Bambi might be very good, but I need to see the doctor, and the doctor only. I have had breast cancer and a complicated double mastectomy with reconstruction, and this is no time to mess around with someone unfamiliar with my case.
Receptionist: But Bambi —
Me: (Cutting her off): I will see the doctor. When is he available?
Her: (Begrudgingly): How about June 3 at 10 a.m.?
Me: I’m seeing the doctor?
Her: Yes, Dr. Reconstruction.
Me: (Summing it up): OK, so just to reiterate: I’m seeing Dr. Reconstruction June 3 at 10 a.m.
Her: Yes, see you then.
Me: Thank you very much.

I guess the key is, you must be persistent by plowing through all the nonsense that unfeeling or uncaring medical staff throw at you. It would’ve been easier to be complacent, but in the long run it would not have been the right choice for me.

Often the things we know are worth having — like appointments with quality doctors — are worth fighting for.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

The ‘Why’ Factor

Posted on: May 17th, 2009 by
2

To be a patient is to be a detective of sorts. You and the doctor need to work together to put figure out what is happening — or not happening — in your body. This doesn’t mean that the mystery will be solved, but a doctor’s job is to figure out what the problem is and, if possible, how to remedy it or alleviate it.

Gleaning the “why,” “what,” and “how” out of doctors is your job.

And that is somewhat harder because it requires courage to ask “why,” because it may piss a doctor off, and result in getting an unsatisfactory response or lack of empathy. By satisfactory response, I am not referring to getting good medical news, but getting a response that answers your question(s) to your satisfaction. Perfectly valid questions that you, the patient, have carte blanche to ask include:

    • Why do I need this treatment regimen instead of this other one?

 

  • How does this medicine affect the body?

 

 

  • What are the side effects of this treatment/medicine?

 

 

 

For example, I was lucky enough to have my surgeon actually do my biopsy outpatient (I was conscious with a local anaestheic). And “why?” was the question foremost on my mind. He had just told me that the biopsy had to be done now because he had a strong feeling…he could tell…the mammogram revealed something that was likely cancer. No time to waste.

So during the procedure, I started with a search for empathy. I told him I didn’t want it to be cancer (as if any patient would want that!), and his answer showed his kindness. He said, “I don’t want it to be either.” I felt so much better knowing that he was really on my team, and that I was important to him.

Then I asked him “why?” After all, I explained, I was young, never smoked, drank, or did drugs, exercised regularly, had a healthy family, and ate healthy foods. I thought that if my being a Ms. Goody-Two-Shoes targeted me for ridicule, at least I would have one perk: good health.

My surgeon gave me a truthful answer, which is why it satisfied me: “I don’t know. I don’t know why a person like you would get cancer.”

Sometimes the simplest answers are the right ones, and in this case, “I don’t know” helped me realize that doctors weren’t magicians and they didn’t know everything. His response also empowered me because prior to the biopsy, I had mulled over and over again in my mind — even though I sensed, but didn’t know if the abnormal mass was cancer — what I could’ve possibly done to cause it.

I also asked every doctor thereafter “why?” I guess deep down I needed to conduct an informal poll of doctors’ opinions as to why I got cancer. One doctor blamed me for not having children and tried to find flaws in my lifestyle. I left his office deflated.

So I decided to stand by the surgeon’s response, “I don’t know.”

In this day and age, the blame game runs rampant, and we hear all sorts of nonsense about how to prevent cancer. It’s human nature to want to know what causes — and how to prevent — all sorts of maladies. Eating healthy and not smoking improve the odds of health and longevity, but I have learned that a healthy lifestyle is no guarantee of a healthy life.

Still, I eat healthy as I’ve always done — lots of fruits and veggies, grains, chicken and salmon, among others. I am going to start jogging again soon. Rather than believe that I’m doing this to prevent cancer and other serious conditions, I choose to believe that a healthy lifestyle provides a good foundation for a good 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 University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

‘You’re Too Young for Breast Cancer’

Posted on: May 11th, 2009 by
4

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Who’s Afraid of the Big Bad Medical Administrator?

Posted on: May 6th, 2009 by
3

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.
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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.