Breast Cancer Treatment - What I Learned

I have certainly seen my share of doctors over the past year since my cancer diagnosis and I have learned the importance not only of effective communication, but of being your own advocate.

Just recently, I suffered for nine weeks with what I thought was Shingles because one of my doctors told me it was.  I did my research and the diagnosis seemed almost spot-on.  I asked that doctor if I should seek care from a specialist and she told me it was not necessary and gave me a prescription.  Long story short, 5 weeks later I spent a week in the hospital with a staph infection and was pumped, intravenously, with some of the most powerful antibiotics there are.  After that week, I went home not much better than when I had arrived.

After a few more weeks, my oncologist thought that it was ridiculous that this Shingles rash was not going away and she sent me to see an Infectious Disease Doctor.  He said he didn’t think I had Shingles at all, that it was a bad, or allergic, reaction to the radiation therapy I had just completed days before the rash started.  He sent me to a dermatologist for a skin biopsy – sure enough, no shingles, just a bad radiation dermatitis that got complicated somewhere along the way.

The dermatologist gave me Amoxicillin and a topical steroid cream and within two days it started clearing up!  Nine weeks of suffering unnecessarily because I didn’t listen to my gut and see a specialist when the rash first started – I listened to my doctor and did only what she said.  I even saw an Infectious Disease doctor daily that week I was in the hospital and he never questioned whether or not it was actually what I said it was upon admittance.  Ok, so that wasn’t very short, but it also could’ve been a lot longer.  This experience taught me a huge lesson and strengthened my feelings on the importance of being your own advocate for your health.

So many doctors these days are scheduling patients every 15 minutes; some even schedule multiple patients for the same appointment time – it happens at my oncologist’s office all the time. What are they thinking?

If it were any other business, they would probably go out of business rather quickly because they would lose customers. Why is okay, then, for doctors to do this? Well, because they know we are there for a medical reason and that is why we won’t just get up and leave and say we’ll just go to a competitor. We’ll sit and stew and when we finally get called into the exam room, we wait several more minutes, then we feel rushed by the doctor when he/she finally arrives and we go home wondering why we let them treat us like that!

If you have any issue you feel your doctor is not addressing, or not addressing completely, be firm. Would you rather drive home thinking to yourself “Why didn’t I just make her stay and answer my question?” Be present and make sure your voice, your concerns, and your problems are addressed.

People are often intimidated by doctors.  I have felt that way at times.  We need to remember that they are people just like us.  Actually, perhaps we need to remind them that we are people just like them!

We have to be assertive to get past the power imbalance that our culture has created between us and our doctors.  Don’t accept a simple “no” to a test you feel you need, whether it be from the doctor not feeling it’s necessary or not wanting to do it because your insurance declines it.  If it’s the latter, ask your doctor to provide more information to the insurance company and urge them to reconsider authorization.

We all need to be proactive in understanding the health care we receive to protect ourselves from mistakes or errors and assure we get the treatment we need.  Don’t hesitate to get second opinions, and sometimes even third opinions.  Remember, doctors know a whole lot more than us, but they most certainly don’t know it all!

Take a more active role in the process.  Advocate for the best outcome from your treatment, no matter how significant or insignificant it may be.

After being diagnosed with an illness, you’re not expected to understand all the minute medical details, but you should do at least a little bit of research so that you aren’t overwhelmed at your first follow-up visit.

Know how your body works. Write down illnesses and injuries you’ve had, medications you’re allergic to, medications you’re taking and dosages, how you respond to medication.

Being curious about the particulars of your illness and what to expect, or possibly expect, could save your life.

As stated above, today's healthcare system is all about increasing the numbers of patients seen by doctors (while reducing the reimbursements and coverages – that’s a whole other article!) Be prepared for your doctor visits. It shows the doctor that you’re part of the team and not simply a victim. Being curious may even get the doctor to think twice about a test, a diagnosis or a treatment. It lets the doctor know that you’re serious and that you really are in charge of your own health.

I have gotten good at remembering to write down questions or comments I have before appointments and when there I simply don’t let the doctor's rush, rush, deter me from getting what I need from him or her.

When you see your doctor, take a list. Write down questions and concerns and prioritize it. Discuss the most important things first, so if it turns out that you don’t get all your questions in, at least you get the most important ones answered.

Being curious and asking a lot of questions may even motivate your doctor(s) to think about your questions or even do some research to be prepared for your next visit.

Being your own advocate gives you the presence of mind to partner with your doctors. Ask questions at every stage of the game. When you feel strong and assertive, rather than like a victim, it can actually improve your body’s immune function. Again, that’s another topic all together.

In conclusion, we all have to be in control of our well being.  We can do that by being well informed and well prepared when we see our doctors.  Having your list or prioritized questions to ask the doctor will allow you to optimize the time you have with them.

Simply put, YOU are your own best advocate.