Monthly Archives: March 2016

How I Discovered My Thyroid Cancer

one-ten-millionth-chance-of-finding-cancer-cellOne common question people ask me is how I discovered my thyroid cancer.  Cancer makes people (understandably) nervous, so it’s natural to want to know how to at best avoid cancer, or at worst detect it early.  Well, Dr. Elliott helped me discover the cancer in 2014 (read more here), but my first clue was the goiter.  I originally discovered the goiter back in 2006 – I felt a lump in my neck.  I could feel it when I swallowed and it moved up and down.  It felt like I was having an allergic reaction and my throat was swelling – not to the degree that it interfered with breathing or swallowing, but I was definitely aware of it.  My son was only 6 months old at the time, and I later discovered many women experience thyroid issues during or shortly following pregnancy.

I checked in with my physician who ordered an ultrasound and blood test.  I had the goiter measured by ultrasound, and at that time it was only about ½ a centimeter.  The standard guidelines say you should generally be concerned when goiters are over 1 centimeter.  I was told no further action was necessary, but it was something I might want to “keep an eye on over the years”.  The instructions were vague – my doctor never said I should check it again in “x” number of months.

ThyroidSys1My blood test showed that my Thyroid Stimulating Hormone (TSH) was off the scale at greater than 100 (normal range is 0.4 to 4).  You know how you get lab tests and there’s a range of normal and you sometimes get a “High” or “Low”?  My TSH was so high it was off-the-chart unmeasurable – they couldn’t assign a number to it.  My doctor almost fell off his chair when he read the results (I know now that an engaged doctor would have known the results in advance of my appointment instead of reading them for the first time in front of me, unable to disguise his surprise).  He said I should weigh 300+ pounds and move like a sloth with a TSH like that.

I was given thyroid medication and told I would have to take it for the rest of my life – since my body wasn’t properly producing thyroid hormones I would have to get them from a medicinal source.

Basically my pituitary gland was pumping out copious amounts of TSH as an instruction to my thyroid to produce thyroid hormones, but because my thyroid wasn’t functioning correctly there wasn’t enough thyroid hormones in my bloodstream to tell the pituitary gland to quit with the TSH, so it just kept pumping it out.  For more information about thyroid function here’s a great article on the topic.

I was tired, but I had a new baby and a good night’s sleep was a distant memory.  I had dry skin and brittle nails, but I was washing my hands constantly after changing diapers, feeding, etc. etc.  Other than the lump I really didn’t have symptoms strong enough to indicate something was wrong.  This was true from my initial high TSH test through the next 8 years to my cancer diagnosis.  Thyroid disease and thyroid cancer can be subtle, which is why it is wise to get a neck check and an annual thyroid blood test.  For more information about thyroid screening guidelines, check out these articles about blood tests  and checking your neck.

Do you or someone you know have experience with detecting thyroid cancer?  I’d love to hear from you – please leave a comment.

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On Your Own Terms

continuing from my last post

My first appointment with ENT #2 was great.  We discussed my “undetermined” fine needle aspiration (FNA) thyroid nodule test results and what they meant.  We discussed how I needed a follow-up FNA in the hopes of getting a more definitive result, and how ultrasound guidance could help.  We discussed the best medical facility in the area I might go to for the test.  I felt at ease. ENT #2 took the time to answer my questions.  He recognized who I was as a patient, listened when I said I wasn’t interested in unnecessary surgery, and understood that I wanted to know what I was dealing with before I made any decisions.  I left that appointment with a lab slip for a second FNA test and renewed hope that I was on the right path.

After a second FNA test, this time using ultrasound guidance and the technician approaching the nodule from the right side (the first test was done without ultrasound guidance and approached from straight on), I went to my second appointment with ENT #2.  I already knew that my results were “suspicious” for papillary thyroid cancer because I’d asked for a copy of my test results ahead of time (read more about why you should get your test results ahead of time in my previous blog post).

It was alarming to see in black-and-white that cancer was an imminent possibility.  It took a lot of tears, support from my then-boyfriend, now fiancé (side note: if you find a partner who can support you through cancer you should hang onto them!), support from my family, research online, and just allowing the information to process before I had my second appointment.  Yet I was glad I had time for the news to sink in so I could approach my appointment from a less emotional and more factual, problem-solving standpoint.

TermDNAMy second appointment with ENT #2 was very different from the first.  Obviously there was no resumé since I was no longer a new patient.  In addition, the compassion I had felt at the first appointment had been replaced with just a hint of a dominant, overbearing attitude.  It seemed ENT #2 had made up his mind that my thyroid should come out.  He explained there was a 70% chance my thyroid nodule was cancerous, then proceeded to explain why I should have it removed.  When I asked questions or explained that I wanted to be certain before I had surgery, ENT #2 would steer the conversation back to a “why not take it out and avoid the risk?” approach, attempting to convince me that I should sign up to have surgery.

Information_is_knowledge_-_knowledge_is_powerMy research showed that the best thyroid specialists were typically located at university medical centers.  These are the doctors who are apprised of the latest technologies and techniques, and perform the most specialized thyroid surgeries. This article was very helpful in researching how to find a thyroid surgeon.  I had learned that while ENTs may be very skilled, they often treat a wide variety of illnesses and conditions and may perform a variety of head and neck surgeries, but they don’t specialize in thyroid disorders.

This became apparent when I asked ENT #2 how many thyroid surgeries he had performed in the past year and he didn’t directly answer the question, but instead told me how many surgeries of all kinds he had performed.  He clearly wasn’t a thyroid specialist.  His dominating attitude and the feeling that I was being pressured into surgery made me certain I wasn’t in the right place.  I had seen this game before.

This time I used it to my advantage.  I had no intention of having ENT #2 perform my surgery, but I knew there was a 70% chance I might end up needing a thyroidectomy.  I also knew if I did end up having surgery it would most likely be at a university medical center, the closest of which was 125 miles away.  Obviously it would be more convenient to have pre-operative procedures done locally, so I allowed ENT #2 to believe I was buying into the idea of surgery, and got orders for any pre-operative procedures that were necessary.

As a patient facing possible thyroid cancer, I was learning how important it was to conduct my own research.  Coming to doctor’s appointments prepared with questions was extremely helpful.  Knowing what I would and would not do medically (I knew I wouldn’t have surgery unless I was certain it was necessary) helped me to not feel pressured into a decision I might later regret.  Both ENT #1 and ENT #2 would have proved themselves right if they’d removed my thyroid because it did turn out to be cancerous.  But if they’d removed my thyroid and it wasn’t cancerous, I would have been taking medication every day for the rest of my life unnecessarily.  By evaluating my test results, conducting my own research, and seeking a doctor who would partner with me rather than force my decision, I gave myself the best opportunity to face thyroid cancer on my own terms.  I was relentless in this pursuit.

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Have you ever pushed back against pressure from your medical practitioner?  What was the outcome?  Please leave a comment.

What Does Your Doctor’s Resumé Look Like?

On my path to a thyroid cancer diagnosis I had encountered an Ear, Nose and Throat (ENT) specialist who was interested in me as a surgical candidate and source of income much more than as an individual, unique patient.  You can read more about my experience here – I refer to this specialist as ENT #1. Leaving that specialist’s office I felt completely dissatisfied and knew I wanted a second opinion.

When looking for my second specialist, I researched my choice of doctor a little more carefully.  I live in a small town (population less than 10,000) so it’s easy to ask around and find out about doctors.  Interestingly once I started asking about specialists, I found out that two different people in my office had experience with ENT #1 and neither of them had good things to report.  I’d like to say I wish I’d asked around sooner, but I had learned some valuable lessons from ENT #1 that I obviously needed at the time – lessons that prepared me for ENT #2.

doctorBigSeveral people gave good referrals for the specialist that would become my ENT #2.  He had removed a close friend’s daughter’s tonsils and she raved about him.  He was recommended by another friend who is a nurse.  At my first appointment I was impressed too.  As a new patient I completed the usual paperwork of insurance/contact information and my medical history, but there was something else in the packet that caught me by surprise: a resumé of ENT #2’s credentials.  I don’t remember the details, but the document was impressive.  He was Board certified, participated on Committee this and Board that, and showcased his credentials very well.

Beyond the document itself I was impressed with the very idea that a doctor would include their resumé with their new patient paperwork.  It was the first time I had encountered this, and I thought it was brilliant.  I think more doctors should do this.  What impressed me the most was the idea that this specialist recognized the fact that I, as a new patient, did not know him and it might be helpful for me to know a little more about him before my first appointment.  I felt as if he was recognizing that I had a choice of medical practitioners and it was important to him that I understand why I should choose him. Resumés are typically for job interviews, and it made me feel empowered that my doctor was acknowledging that I was choosing him from a pool of possible doctors.

One step better would be to provide the resumé ahead of time, and then you could research the doctor’s credentials on a website such as http://www.certificationmatters.org.

Do you think doctors should provide their resumés to new patients? Has your doctor ever provided one?  I’d love to hear from you… please leave a comment.

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Is Your Doctor Healthy or Hungry?

As I’ve mentioned, the healthcare industry is big business (see Surgery For Sale).  You might think there’s plenty of natural demand in the medical business – everyone on the planet has both sickness and wellness healthcare needs.  This is a marketer’s dream… the customers are seemingly infinite and they come flocking to you without you lifting a finger.  While this may be true of the industry overall, each doctor, practitioner, or provider needs to maintain a continuous stream of patients for their particular practice in order to survive and thrive.

There are two main categories of providers I have experienced in healthcare: the healthy and the hungry.  The healthy practitioners are interested in the overall wellbeing of their patients.  They realize that if they provide exceptional care their business will thrive – they will make money while helping people.  The hungry are the short-sighted practitioners who create artificial demand for their business.  They convince patients into surgeries they may not need, order tests that aren’t a prudent use of the patient’s financial resources, refer to specialists or pass the problem on to avoid liability, and generally make decisions that limit their risk exposure or generate revenue in the short term.  The patient’s well-being is lost on the hungry doctor.

In my journey through thyroid cancer I have experienced both healthy and hungry doctors.  The more I paid attention to signals doctors were sending, the more quickly I could accurately categorize them.  There are common signs of:

Healthy Medical Practitioners

Healthy Plate

  • make good eye contact in way that evaluates who you are and what you need
  • have a solid understanding of their field of medicine and the specifics of your condition
  • take time to thoroughly explain procedures, possible outcomes, and risks in a neutral manner: citing overall statistics or odds, leading you to your own conclusion or making a cooperative decision
  • invite your questions, and answer them in a way that is tailored to your needs

Hungry Medical Practitioners

Glutton

  • make good eye contact in a way that evaluates what they can get from you
  • have a solid understanding of their field of medicine and the specifics of your condition, and know how to use this information to scare or coerce you into the course of action that will minimize risk or generate excess revenue
  • take time to briefly explain procedures, possible outcomes, and risks: then focus on why the procedure is so beneficial, necessary, and urgent leading you to a coerced decision
  • invite your questions, and answer them in a way that is tailored to their needs

The differences can be subtle if you’re not paying attention, but become more obvious when you look for the cues.  Hungry practitioners will often dominate your decision-making: if you ever feel “suffocated” or as if you are being backed into a corner by your medical practitioner, you have encountered a red flag that they are hungry, not healthy.

Your instincts are a huge indicator of how healthy your practitioner is.  Learn to trust your instincts. Look for red flags. Your doctor should feel like a partner, not an adversary or a salesman. You should always feel like you are in charge of your medical decisions – because you are!

Please leave a comment – I’d love to hear your thoughts

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Leveraging Your Healthcare Data

Once you’ve started collecting your medical data (see my last post Your Health, Your Data) you can use it to save you time, money, and frustration with your healthcare.

I used to have a blood test, ultrasound, or other test, wait weeks for the doctor’s office to notify me that my results were in, schedule a follow-up appointment with the doctor to receive the results, wait for that appointment, wait at the appointment while the doctor read my results for the first time (why don’t they ever read them ahead of time?), then finally discuss my results and options with the doctor.  Once I figured out that I could ask for a copy of every test I took, and the lab or clinic was obligated to provide me with a copy of the results, I shifted the power of my medical decisions back to me.

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It has been extremely helpful for me to exercise my right to personally receive a copy of my test results because I’m an information hound.  I want to know the details of what I’m dealing with: all the possibilities and options.  I’m also highly analytical (just ask Lumosity ) and I don’t make decisions without analyzing the details first.  Because of these tendencies, I’ve learned that it’s good for me to get the results of medical tests prior to my visit with the doctor.  That way I don’t waste the cost of an office visit just to hear the results and discuss alternatives. If I can do my own research ahead of time I can come to the office visit knowing what Google says the results mean and my options are.  While I know it’s not 100% accurate, and I realize I can’t self-diagnose via the internet, it gives me valuable information which helps me to leverage my own power of choice rather than being totally led by the medical provider.

Please don’t misunderstand: I’m not trying to cut my doctor out of the picture, but instead I’m showing up at my appointment informed about my results so I can have an intelligent conversation with my doctor about options.  This saves time – if I discussed options at one appointment I would have to come back to tell the doctor what I had decided, get additional testing, referrals, etc.  If I show up informed I can get everything taken care of in one appointment: get the results; discuss the results; analyze the options; make an informed decision in partnership with my doctor.  Obviously a single appointment saves money too.

keep_calm_and_carry_onA word of warning: don’t go crazy performing Google searches on your symptoms and jumping to the extreme-end conclusion of your test results.  Often one symptom or result could be one of many conditions along a spectrum of very mild to life-threatening.  If your blood work is off, don’t jump to the conclusion that you have the most serious of all possible diseases or conditions that show up.  Know the possibilities, but remember you are just gathering information, not diagnosing your condition.  If you find yourself panicking about your results, get off the internet and just wait for your appointment!  Use your research as a tool to gather more information to help you have an informed conversation with your doctor.

So the next time you have a test or medical procedure performed, ask for a copy of the results.  You might be surprised just how beneficial this information can be.

Photo Credit – Medical

Photo Credit – Keep Calm

 

Your Health, Your Data

Did you know that in Nevada your medical records can be destroyed after 5 years?  For a list of retention in other states click here.

I don’t know when I first became aware that I had unlimited access to my healthcare data, but I do know when I was given advice about what to do with it.  About 9 years ago I was consulting with a pain specialist for some numbness I was experiencing.  He couldn’t figure out why I was experiencing these symptoms, but the possibilities included multiple sclerosis (MS) and a brain tumor.  Charming.  Fortunately it was neither of those, but the doctor explained that MS takes 4-5 years on average to diagnose (Facts About MS).

I had symptoms that didn’t point to a clear diagnosis, and because he couldn’t rule out MS, the doctor advised that I start keeping my own file of all medical tests, images, etc.  He said this would make it easier whenever I was referred to a new specialist or doctor – I could simply hand over the file and they could instantly see my medical history.  It was my file to keep – he advised I should never leave it with anyone, but they could make whatever copies they needed before returning it to me.

Medical RecordsThis has been one of the greatest pieces of advice I have ever received from a doctor.  When I was diagnosed with thyroid cancer I had a complete history of all my thyroid blood tests over the years, as well as my original goiter ultrasound, all saved on a flash drive.  As I consulted with various doctors and specialists, it made it so much easier to just hand over the file rather than trying to chase down all the tests from different labs and testing facilities.

Keeping your own medical records is becoming increasingly easier.  For example, Labcorp used to send test results to your doctor, and you could request a copy from your doctor’s office.  Then they gave you the option to have a duplicate copy of the results mailed to you, but you had to remember to ask for that before they did the test.  Now they have an online portal where you login to see your results.  This makes it so easy to access your results.  I now have access to my Labcorp results, family practice doctor records, UC Davis Medical Center records (where I had thyroid surgery), and my son’s gastroenterologist’s records, all through patient portals. However, access isn’t enough – you need to download the results and store them on a location where they won’t be deleted, and where they can all be kept together and accessed instantly by you.

Keeping your own medical records is becoming increasingly more relevant. There is nothing requiring each online portal provider to give you continuous access, and you’re relying on them keeping your data.  Here’s the thing you really need to worry about: If you’re over 23 years old Nevada law only requires your doctor, lab, or testing facility to keep your medical records for 5 years after they were created or received (see NRS 629.051).  This doesn’t mean medical providers won’t keep your records for longer, but there is no guarantee.  They are completely within their rights to delete your records.  And it’s not even from the date of your last service with them – it’s from the date they were created. Nobody is going to have your complete medical history if you don’t start collecting it yourself.

The test performed on my goiter was done 8 years before I was diagnosed with thyroid cancer. If I hadn’t kept a copy of my medical records they might not have been available, and I would have no baseline from which to determine how much my tumor had grown.

If you don’t already collect your medical records, you should seriously consider starting this practice.  It might take some time to gather all your records so far, but it’s a worthwhile exercise.  Grab a cup of coffee or a glass of wine, plug in your flash drive, sign on to your portals and start copying files.  Send records requests to any testing facilities or hospitals where you’ve had imaging, surgery, and so on.  Once you’ve gathered your history you can keep it up-to-date by requesting or downloading a copy of every test or procedure you have.  Every medical provider has to provide you with a copy at no charge – this includes MRIs, x-rays, ultrasounds, doctor’s notes, everything.  Think of it as an insurance policy – you have it in the hopes you’ll never need it.  Do it for your kids too – some day they’ll thank you for it.

 

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Surgery For Sale

My mother taught me that doctors were to be respected.  She’s a nurse, so she knows something about the topic.  She also taught me that everyone, no matter how highly respected, is human and capable of making mistakes.  I think it helps to approach your medical care both respecting your doctor and knowing they are human and capable of making mistakes.  The trick is to find the doctor that deserves your utmost respect, treats you like a human being, knows they are capable of making mistakes, and mitigates the possibility of error as much as possible.

Continuing from my last post (Clues), my doctor who I call ENT#1 had just performed a Fine Needle Aspiration (FNA) biopsy on my thyroid.  The results should have taken a couple of days.  A week later I hadn’t heard anything so I followed up.  ENT#1’s receptionist told me they didn’t have my results yet, but they should be in the next day.  I called the next day and was told the office had received a batch of test results from the lab that day, but mine wasn’t among them.  I requested that the receptionist call the lab and tell me where my results were. I explained that if they couldn’t locate my results I would be calling the lab myself (check out this article New Ruling Means Patients Can Access Their Own Lab Results).  Magically within an hour I got a call to say my results had “just been delivered” to the office.  I told the receptionist I would stop by to pick up a copy.

When I arrived the receptionist wouldn’t give me the results.  She said I needed to meet with the doctor first, but he was fully booked so I could make an appointment in a couple of days.  I wasn’t interested in waiting a couple of days.  I wanted my results right then – I could see them in her hand.  If you’ve ever waited for test results, especially ones that could have a significant impact on your life, you know that hours seem like days, weeks seem like months.  I was tired of waiting.  I asked the receptionist if she was refusing to provide me with a copy of my results.  Her refusal would have violated my patient rights outlined in the Health Insurance Portability and Accountability Act (HIPAA).  For more information about your rights under HIPAA, click here.  Magically ENT#1 was available for a quick consultation.  Imagine that – two magic tricks in one day!

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In hindsight this consultation was a sales pitch for surgery.  The guise was that I needed help interpreting my results.  My results were “undetermined”, meaning I had no more idea now than before the FNA test whether or not my thyroid was cancerous.  ENT#1 kept talking about thyroid surgery “just in case” or for “peace of mind”.  He pointed out that fortunately people could “easily live without a thyroid”, reminded me that I was facing a certain amount of risk given the fact that I had a nodule on my thyroid, and talked at length about surgery.  I’d told him at my test appointment and reiterated at my “consultation” that I was not about to have surgery to remove an organ that might not need to be removed. No matter how many times I indicated I wasn’t interested in surgery, he kept circling back to the topic.

It’s true that people can live without a thyroid, but it requires taking medication every day for the rest of your life. If this doctor was engaged with who I was as a patient he would have known that taking medication doesn’t fit my definition of “easily” living without a thyroid – I am not interested in putting unnatural chemicals into my body unless absolutely necessary.  There are risks with thyroid surgery including issues with the parathyroid gland (which controls calcium levels) and paralysis of vocal cords causing a permanently hoarse voice.  I knew if I ended up chewing 4 extra-strength tums every 4 hours or sounding like Marlboro was my middle name I wouldn’t be “easily” living without my thyroid, and I certainly wouldn’t be glad I had my thyroid removed “just in case”.

I left the appointment knowing I would seek a second opinion, and feeling more than a bit frustrated.  One painful test, hundreds of dollars, and 9 days of stress later I had no more information about my medical condition than before I started.  There was, however, a silver lining in all of this.  I didn’t realize it at the time, but a whole new level of awareness was developing for me.

I was starting to realize doctors, nurses, and receptionists were not the ones holding all the power.  I had learned that by reminding the receptionist that I owned the test, I got action – both in locating the results and getting in to see the doctor.  I had been forced to realize that medicine was a business with profit motives just like any other business – this made me a lot more cautious about who I selected for my medical care.  Medicine is big business, and putting your care in the hands of purely profit-driven providers could leave you paying an immeasurable price.

I should have run far and fast from this doctor the minute I felt uneasy.  In hindsight it my experience with ENT#1 was a lesson I needed to learn and I believe it happened for a reason.  However, I also believe it is wise (and often less painful) to learn from other people’s mistakes.  So if you ever get a gut feeling from a doctor that something isn’t right or they don’t have your best interests at heart, run, don’t walk, out of the office and don’t look back.

Have you ever experienced a doctor trying to “sell” surgery or a procedure?  I’d love to hear about it.

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