My friend Karen was interviewed in Forbes Magazine in 2012 because she had a unique perspective: She had been diagnosed with breast cancer, and she was a cosmetic and reconstructive surgeon who performed breast reconstruction surgery for many women with the disease.
Karen wrote a blog throughout her treatment, all with the intent of informing women that, “although such a diagnosis is awful, it is not the end of the world.” Her premise was that you could take control of the situation, seek out valuable assistance and make decisions that were best for you.
Her nine recommendations are outlined below, along with my thoughts on their relevance for any difficult medical diagnosis.
Recommendation #1: Seek out the care of a specialist.
You can look for an accredited breast center in your area through the American College of Surgeons web site. At a minimum, you should meet with a breast surgeon or general surgeon who has significant experience with breast cancer treatment.
This piece of advice holds true for any number of diseases for which you may need a surgeon and/or a specialist. For example, Health assist clients who have Parkinson’s disease and who see a movement disorder specialist (rather than a general neurologist) receive a more comprehensive approach to treatment.
Recommendation #2: Encourage your providers to work as a team.
Your physicians are most effective when they work as a team. They should be able to offer you alternative options and to answer all of your questions. If you feel uncomfortable with any of your providers, it is time to get a second opinion.
This is one of the most critical aspects of comprehensive care and something we constantly reinforce and facilitate for our clients. Unfortunately, in places not as well organized as breast centers, this requires extra effort and time among physicians (who are already stretched for time).
In an ideal environment, we’ve been able to facilitate conference calls so specialists can consider findings together, relay their recommendations, receive feedback from their colleagues and come up with a mutually agreeable approach that is consistent with the client’s preferences and priorities.
Recommendation #3: Allow others to assist you.
Let the people in your life help you. Never be pushed into a quick choice. Waiting a few weeks to wrap your head around the decision-making process will not change your prognosis.
Often, our work involves identifying both the people around a client who can be supportive, as well as additional resources in the community that may be helpful. Examples include support groups organized through the American Cancer Society or other diagnosis-specific organizations, as well as healthcare providers themselves. These can often be accessed both in person or online.
Recommendation #4: Bring a “buddy” with you to your doctor appointments.
We call such individuals “Care Partners” and have written extensively about the value someone like this brings to the experience. We fulfill this role for many clients.
Recommendation #5: Make sure your questions get answered.
Meet with all your doctors, if you can, before you make your final decision. Your physicians should be able to speak to you in plain English and answer your questions. If one session isn’t enough, go back for a second session.
We coach our clients to use an agenda to outline the objectives they have for physician meetings. This always includes a list of specific questions they want to have answered. This tool helps you to take control of the meeting and meet your expectations.
And, as Karen suggests, even if you are satisfied when you leave the physician’s office, if more issues and questions arise, don’t hesitate to circle back.
Recommendation #6: Have a paper and pen nearby.
Keep a pad of paper and pen by your bed, that way, when you wake up in the middle of the night with a burning question, you can write it down before you forget.
This is fabulous advice when faced with any diagnosis. It’s so easy to have a quick thought and minutes later it’s gone. (Leaving yourself a voicemail message works well too!)
Recommendation #7: Identify your values and preferences
For some women, holding on to their own breast is the most important thing. If it is appropriate medically, they may be a candidate for lumpectomy and radiation. For other women, the anxiety of recurrence and monitoring the opposite breast may be enough to put a serious dent in their quality of life. For those patients, bilateral mastectomy and reconstruction may be the appropriate choice. In reconstructive surgery, patient satisfaction is most highly linked to being actively involved in the decision-making process and the relationship they have with their plastic surgeon.
This advice holds true for embarking on any health care intervention you are considering and is especially important as end-of-life decisions are being contemplated.
Recommendation #8: Take time to rest.
This is true not only for clients facing their own healthcare crisis, but for those who find themselves in the role of primary caregiver for others as well. Of course, this is not always realistic, in which case identifying additional resources can be helpful.
Recommendation #9: Live in the moment.
Take time to enjoy the people in your life. If you feel like you are doing nothing, remember that doing nothing is actively healing.
In practice, of course, this is easier said than done. Identifying resources such as support groups, counselors, and/or a meditation practice can be helpful.
Although incredibly saddened by the news that my friend Karen had passed on, I smile when I think of how pleased she would be to know that she continues to not only teach me, but that she impacts the lives of others with her written words.