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Doctor, This is What I Need

During a recent visit with my oncologist, we got to discussing the need for metastatic awareness, communication issues that breast cancer patients feel they have, and how best to share that information.  In my opinion,  I have the best communication with my oncologist.  As a stage IV patient,  I have to be able to discuss anything with him and trust in the information he provides to me.  This relationship becomes one of the most important and critical one in a cancer patient’s life.  And shout out to Dr. Christopher Perkins (of California Oncology of the Central Valley) for being one of the most amazing doctors and human beings I have ever known (statues to be erected in his honor pending).  I am blessed with the luxury of knowing, and being comfortable with, that if and when the proverbial sh*t hits the fan, I will have received the best care possible.  This is a luxury that not every cancer patient shares, nor is it one I had with my previous oncologist which makes my appreciation that much greater.

In discussing this with my doctor, he mentioned that it would be beneficial for our doctors to know what we needed from them in terms of communication.  In dealing with such a scary experience, patients may need information relayed to them in a specific way and in turn, need to share information in ways they are comfortable with.  For instance,  a metastatic patient typically has a PET or CT scan every 3-6 months.  Some patients receive a phone call or email the same day with results while some wait until their next doctor visit to receive the information in person.  I know that as someone who gets my results in person at my next appointment, a phone call from my doctor’s office prior to that would likely give me a nervous breakdown while for some people, waiting a couple of days has the same adverse effect.

It is my personal opinion that the adage of ‘no news is good news’ is complete and utter nonsense.  Take for instance a friend of mine who recently found out she had progression with possible change in hormone receptivity.  She was sent for scans and a biopsy days ago…with no word from her oncologist’s office.  Knowing you have progression coupled with scanxiety is terrifying, so coming home to find an email regarding an addition to your medical file detailing your biopsy results with no contact from your doctor first is one of two things:  infuriating and devastating.  Not only is someone not detailing what it means on that jargon-filled report, but now that trust in your doctor patient relationship is damaged to a degree.  Was it an oversight?  Is the doctor on vacation in the Swiss Alps with no access to a phone or email?  Do I not matter enough as a patient to warrant a phone call on what could be a serious prognosis?

In taking my doctor’s advice, here is a short list of things we need from our doctors:

The truth…in layman’s terms.

I don’t care if you have to bust out the crayons and draw me a picture.  If we don’t understand it, please explain it better in a way we will.  Of course, that also means we need to tell our doctors when we don’t understand something.  We too, need to be truthful.

Consistency.

If your office typically calls with test results, please tell us ahead of time and call when you say you will.  If results typically come in person, please, please do NOT call.  Even if you think you are giving us the best news of our lives, seeing your office’s name on my caller ID is likely to have me passing out while I reach for the Xanax.  I’ll take my good news in person like you told me I would.

Don’t give more information that we need.

If you tell me every side effect I could possibly have, guess what, I’ll get them.  As for prognosis…unless a patient specifically asks “how much time do you think I have”, please just keep that to yourself.  I say all of the time that I do not have an expiration date stamped on my behind any more than anyone else.  I don’t need a looming timeframe in my head so unless we ask for that information, just save it.

Who do we call?

On a Sunday afternoon when that weird random side effect pops up that only 1% of patients develop so of course, I will too…who do I call?  Is there a nurse service?  Do I have to go to an urgent care or worse, the emergency room?  I typically prefer to wait to contact my oncologist’s office, but at what point is that a bad idea?  And don’t say to use your judgment because the cancer universe is wide and some of us may be at the ER every day using our own judgment.

Know us.

Take an interest in us not only as cancer patients, but as people.  A previous oncologist I was with for five years wouldn’t know me if I bumped into him at the grocery store…and I think I’m pretty memorable!  My current oncologist always takes the time to ask me questions about my life, my fears, my feelings.  It is because of this that I feel I can ask or tell him anything I need to.  We NEED this.  One of the reason we have so many online support groups and forums is not just for the connectivity of someone who truly understands what we are living with.  It is sometimes to ask information that we don’t feel comfortable discussing with our doctors.  And this is not necessarily a great idea as we don’t need a group of armchair, Dr. Google, pseudo-doctors contradicting what you are telling us (not that they don’t mean well).  This can be particularly hard when talking about embarrassing topics such as vaginal dryness (thanks menopause), hemorrhoids (yeah, I know), and weird rashes that show up every time your medications are changed.  I laughed until I cried talking to my doctor about menopausal side effects that could have been a seriously embarrassing conversation…but in the end, he was able to help me combat some of those side effects and help improve my quality of life.  We have to be able to do this!

…I do not have an expiration date stamped on my behind any more than anyone else.

Obviously, this is not a comprehensive list and is subjective to my experience.  I challenge all of you, fellow patients of The Cancer, to make up your own list of what you need from your doctors, your medical team, even your support network, and have those discussions even if they are difficult.  Our doctors will want this information and it may lead to a more productive, comfortable, relationship with those that are helping to keep us alive.  Quality of life is not something to dismiss and the effects of cancer treatments, whether early or late stage, can be unbearable at times.

Better communication with your medical team is a game changer.  However, if you are not able to get the communication you need and it impacts the quality of care you are receiving, do not be afraid to seek other opinions and be your own advocate.  It is your health and that is not something to be frivolous with.  I believe that all of our doctors do what they do, took the career path they chose, in order to help people like us.  To help all of us.  Sure, they have a lot of patients and are pulled in ten different ways.  The value of these types of conversations are critical to both you and them.  So make your lists of what you need.  Discuss them with your doctors.  You will be thankful that you did.

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  • April Doyle is a MBC patient with a big mouth and passion for writing. Originally diagnosed with early stage breast cancer in 2009, she has been living with stage IV metastasis since 2014. A single mom, April continues to work full time when not running after her six year old son. She has a BA in English Literature from CSU Fresno and can generally be found with her nose in a book, listening to the repetitive shouts of mom, mom, mom.

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