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Communicating with your healthcare team


KatieB

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Learning you have cancer is often frightening and overwhelming.

Talking and listening to your doctor, nurse, and other members of your health care team- even family- becomes difficult. Studies show that clear communication between you and yoru health care team can help you feel better about your choices, and may even improve your quality of care.

Questions to ask aobut your diagnosis:

* What type of lung cancer do I have?
* What stage is my lung cancer, and has it spread to other parts of my body?
* What symptoms of lung cancer might I experience?
* Where can I find more information about lung cancer?
* Are there support groups or organizations available for my family and me?

*Has my tumor been tested for genetic mutations?  Which tumor mutations do I have?


Questions to ask about your treatment:

* What are my goals for treatment? (is it to cure the cancer, control the cancer, or relieve symptoms?)
* What treatment options are available for me?
* Which treatment do you recommend, and why?

*Am I a candidate for target treatment?
* Should I/where do I get a second opinion?
* Are there treatment options I should consider if chemotherapy isn't appropriate or has stopped working?
* What are the risks and benefits of each treatment option?
* What side effects might I experience and how can they be managed or prevented?
* Where will I go to receive my treatments?
* When can I start my treatment and how long will it last?
* Which treatments are not covered by my insurance?
* If insurance doesn't cover this treatment, what options exist to help with finances?
* Are there any clinical trials that might be appropriate for me? Where can I go to get more information about clinical trials?


Questions to ask your new doctor:

* How much experience do you have in treating my specific type of lung cancer?
* Are you board certified as an oncologist, thoracic surgeon or other?
* How to you stay up to date on the latest lung cancer treatments?
* Are you associated with a major medical center, medical school, or comprehensive cancer center?
* Do you and the hospital accept my insurance?
* Will I be able to receive all treatments at this facility?
* Are cancer clinical trials offered at this facility?
* Is there an oncology nurse or social worker who would be available during my treatment for education and support?
* What other supportive services (support groups, housing, transportation, etc.) are available at this facility for patients and families?

There are several things you can do to make communicating easier:

* Make sure you understand what is being discussed. If you do not understand, ask for more detail or a non-technical explaination. If something seems confusing, try repeating it back to the doctor, for example, "you mean I should..."

* For important appointments being a friend or a family member to help take notes, ask questions, and provide support. You can also ask if you may tape the conversation.

* Ask to see x-rays or scans or have the doctor draw a diagram if you think pictures will help you understand something better.

* Write down questions you may have as they come up, every day.

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  • 1 year later...
  • 3 years later...
  • 8 months later...
  • 2 years later...

Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.

Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?

Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.

You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.

Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.

Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.

A common emotion that is experienced by most individuals at some point or another, fear is considered to be a normal, natural part of life.  However, fear can lead people to experience a wide array of physical and mental changes, and irrational or intense fear may interfere with a person’s happiness, sense of security, and ability to function effectively.

Consult with mental health Counselor.

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  • 2 years later...

My first interaction with the pulmonologist did not go well at all. She was very aggressive, kept referring to “your cancer”. I have only had one CT and no biopsy yet. She was very annoyed that I wanted to put off the biopsy for a week or two for a trip to Europe, told me I would probably be dead by November (granddaughter’s wedding), if I don’t die on the trip from a blood clot. As an RN, I felt she was completely off the wall and disrespectful. I have asked to be assigned to another pulmonologist. I never have and would never address a patient as she has addressed me. Thanks.

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Isabelle that’s a terrible way to treat any patient and yes I would push for another doctor. I’m not a doctor but have to wonder way she was so upset you were waiting a couple of weeks. Did she say? 

It all seems so harsh. 

Enjoy your trip and based on my experience nothing moves quick when it comes to testing, results and treatment. 

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  • 1 year later...

I would like to add "don't be afraid to set boundaries" with your healthcare team.  My oncologist is too blunt and when I first started seeing him, volunteered my life expectancy WITHOUT ME EVEN ASKING HIM!!!!!  And was very matter of fact about it, told me I should write a will, etc.  In a nutshell, I was diagnosed with 3A, treatment went well, tumor is gone but I have an adrenal met (more on this in a second) now.  I did tell the folks at the cancer center about him basically dooming me from the get-go, which they thought was awful and I guess other patients have complained about him doing this as well.  But he's an extremely good doctor so I'm sticking with him.  When I talked to the nurse today about an upcoming appointment with him, I told her to tell him that we are NOT discussing my mortality (she was one who I told about his blurting out unsolicited info to me a year ago).  We ARE discussing what the DNA makeup of the met is and how they are going to be treated.  End of story.  So patients have the right to set boundaries.

Secondly, it's OK to do some things on "your terms".  The cancer center called and he had wanted to meet with me on Wednesday (yep, the day before Christmas Eve) to go over all the test results, etc.  So backing up a little here, Thanksgiving was ruined for me because it was the day before Thanksgiving that he told me about my adrenal met, took me off Imfinzi and had me scheduled for a biopsy and blood work.  OK.  So now he wants to completely annihilate Christmas for me - LOL!  But that's not the deal.  My sick leave has been almost tapped out and I can no longer miss entire days of work just for a 15-minute appointment.  I have a good portion of next week off so I asked the nurse if she could schedule a telemed for me instead (he works in a city 1.5 hours away, comes to another city about 30 minutes away once a week) at my local clinic (um, 2 minutes away - LOL!).  Sometimes things have to be done for the patient's convenience as well.  Telemed has been scheduled for Monday, Dec. 28th.  

Rant over.  I'm feeling extremely stressed, angry, scared and on the verge of tears right now.  Ugh, the unknown.  I know I'll feel better once I know what's up and we get a plan of action underway.  I'm going to try to enjoy Christmas.

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On 4/23/2019 at 9:54 AM, Isabelle49 said:

My first interaction with the pulmonologist did not go well at all. She was very aggressive, kept referring to “your cancer”. I have only had one CT and no biopsy yet. She was very annoyed that I wanted to put off the biopsy for a week or two for a trip to Europe, told me I would probably be dead by November (granddaughter’s wedding), if I don’t die on the trip from a blood clot. As an RN, I felt she was completely off the wall and disrespectful. I have asked to be assigned to another pulmonologist. I never have and would never address a patient as she has addressed me. Thanks.

Don't you just love it when they condemn you to death the minute you walk in the door?  My oncologist volunteered my life expectancy on our second appointment without me even asking for it.  Sheesh!

 

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3 minutes ago, GaryG said:

Sandy! Good for you. You are my kind of people.  Funny how some of the brightest doctors have a problem with diplomacy.  I hope the test results turn out in your favor so you can enjoy your holidays. I will be thinking of you and praying. 

Thanks, Gary!  I'm 99.9% certain it is something insidious hanging around in the ol' adrenal glands.  And it gets even more special.....not just on one side but BOTH!  Two for the price of one!  😕  Ah well, when I read some of the stories from some of the long-termers here, their stories (and encouragement) are uplifting and inspiring!  Renews hope in a person!  Thank you very much for your thoughts and prayers!  Very very much appreciated!

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