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BEING YOUR OWN BEST ADVOCATE

By Kayla Giacin
Wednesday, January 8, 2014
http://www.cancerresearchuk.org/
http://www.cancerresearchuk.org/

Just yesterday, I was reading about a new study that found that even though there is a significant rise in the amount of young adult survivors of a childhood cancer, general practiconers are not prepared to handle the care of these young patients.

The Health Day article titled Childhood Cancer Survivors a Growing Patient Population stated that, “Improved treatment of childhood cancer has led to an unprecedented health care problem, with primary care physicians unprepared to care for the special medical needs of adult cancer survivors.”

I recently moved from Connecticut to New York and one major thing I’ve been putting off is finding new doctors!  As an adult, I’ve always been good about staying on top of my health but switching doctors makes me nervous.  What if they don’t take me seriously? What if they aren’t knowledgeable about my specific conditions?

Many times, when you’re younger, a medical professional may assume that you’re generally in good health.  This is a reasonable assumption and given that the rise in young adult cancer survivors is still new, it makes sense that they wouldn’t be armed with knowledge on how to treat very specific conditions.  This is not a general practitioner’s role anyway.  It is, however, their role to be generally aware of your conditions as a whole and be the central piece to maintaining your health care.  This means being aware of red-flags in health and knowing how to go about finding solutions, even if it means referring the patient to another doctor. 

One of the things I’ve always appreciated about my primary care doctor in Connecticut is that he had no problem saying that he didn’t know the exact cause of a symptom and would refer me to a doctor who might.  He often put a “STAT” on my referral.   He also didn’t brush me off if I came in with cold symptoms or something else that seemed minor.  He knew that due to a weakened immune system, I may need treatment sooner than another young person.

Through a lot of frustration and times being sick when it could have been avoided, I learned that you as the patient are your own best advocate. 

Doctors are well-educated but they are not psychic.  You need to communicate your problems to them.  I’ve found out that a good doctor would rather be given too much detail and weed through the information than not be given enough and have to play a guessing game. 

Also, being equipped and prepared for an appointment is key to being taken seriously.  A main concern of mine is that I won’t be taken seriously because I’m younger, but if I go into the office with my prescriptions on a sheet ready to hand to them, a list of concerns and questions, and talk about my health in a knowledgeable way, they’ll know that I’m very aware of my health and therefore take what I have to say more seriously.

Some helpful things to know when seeing a new doctor are:

  • The exact diagnosis and date of diagnosis
  • Names, modalities and total doses of all chemotherapy drugs
  • Doses and sites of all previous radiation therapy
  • Sites of all surgeries
  • The start and stop dates for each treatment
  • Names, doses and purposes of any medications you’re currently on

Also, make sure to have your medical records faxed or sent to a new doctor in plenty of time for an appointment.  This will ensure that they have time to review them beforehand.  I also ask the office staff to send me any office paperwork in advance so I can fill it out at home, or I’ll go to the appointment about 20 minutes early in order to fill it out since I know it may take a long time.

You also need to know what questions to ask as it relates to being survivor.  The Children’s Oncology Group (COG)has a comprehensive guideabout late-term effects that are common for survivors.

Being aware of these and even bringing a copy to your doctor will help to focus on issues that may be specific to you. 

Oncolink also offers a tool where you can develop a care plan based on health risks associated with your medical history.

Remember, although doctors know medical facts, only you know about your body and when it does and doesn’t feel right.  It’s up to you to communicate this to your health team in order to receive the best care possible.

 

Sources:

Children’s Brain Tumor Foundation. (November 11, 2009). What Are Late Effects, and What Should You Know for the Future? Retrieved from: http://www.cbtf.org/learn/what-are-late-effects-and-wha

The Children’s Oncology Group. Survivorship Guidelines. Retrieved from: http://www.childrensoncologygroup.org/index.php/survivorshipguidelines

Health Day News. (January 6, 2014). Childhood Cancer Survivors a Growing Patient Population. Medline Plus. Retrieved from: http://www.nlm.nih.gov/medlineplus/news/fullstory_143889.html

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