Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Sheryl Jedlinski
We go to doctors in search of answers. We want to know what’s wrong with us, and what treatments we might consider. Even doctors who follow the same guidelines may have good, yet different, opinions about how to treat the same individual. Getting a second opinion — whether through face-to-face consultations with world renown experts in their field or online submission of medical records for review– is the best way to erase doubts about our diagnosis and proposed treatment plans.
Admittedly, I knew very little about second opinions until my team of two oncologists could not agree on which treatment may be my next best option. I pursued an additional opinion from another specialist in the field to help me feel more confident moving forward.
Many patients, however, are reluctant to ask a physician other than their own to review their case. We don’t want our doctor to think we don’t trust his/her judgment or to label us as “difficult” patients. Most doctors expect and encourage second opinions. If ours do not, it may be time to consider finding a new doctor.
An extensive Internet search led me to get an online second opinion through a large teaching and research hospital with a women’s cancer center. The entire process was conducted online – including the collection of 500 pages of my medical records. These became the basis for clear medical guidance in the form of a written report about my diagnosis and personalized treatment recommendations.
I opted for a treatment suggested in my report rather than one of the two proposed by my first opinion oncologists. After only a few treatment cycles, my CT scan identified “no new sites of metastatic disease,” and significant reduction in size of all identified pre-existing nodules. I was ecstatic, but then came the side effects (some life threatening) I had been warned are often associated with this treatment.
Every morning I called the oncologist managing my cancer medications to report my worsening condition and seek reassurance and treatment. I never got past the triage nurse who relayed the doctor’s opinion that I could wait until my Friday appointment, which was still days away. Really, with blood pressure readings consistently over 200? I consulted with my internist who took immediate steps to address my issues.
When Friday came, my oncologist would not even enter the exam room. This imposing man stood in the doorway, his COVID-19 plastic shield covering his face and his petite PA standing in front of him like a bodyguard. He never once asked me about my severe adverse reactions to the medications. He just told me to stop taking my two anti-cancer drugs until he sees me again in a month. He could not have been any less invested in me.
What began as a disagreement over my going for a second opinion and my refusal to try his preferred experimental treatment ultimately ended our five-year relationship. Parting ways with a long-time doctor is never easy, no matter what the reason(s). Just thinking about the time and energy required to find a replacement and develop a comfortable relationship is daunting. Even so, we cannot afford to let this deter us from being our best advocate. Having just found a wonderful new oncologist, with a referral from my internist, I wish I had changed doctors sooner.
If you feel your doctor is not engaged with you and your chosen treatment, seek a second opinion and find a doctor who is willing to work with you. We all deserve a doctor we feel comfortable with, who takes time to listen to us, validate our concerns, and empower us to take an active role in our health care. Dr. Right should have it all… a genuine interest in patients’ well-being, good bedside manner, the ability to explain things in plain English, and excellent technical skills and knowledge.
I agree with you, I feel the same way! I wish you the best always. I am using a walker now as I am progressing with my Parkinson’s.
Really, really good! Am sure many individuals will be inspired and strengthen to take the steps what they need to do what is best for themselves.
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I totally agree with you! Recently I had to sever my relationship with my internist of many years. It is so hard to find a new dr. which I have to do in the next few weeks. Yes, very daunting!
You are right on and I applaud you for so eloquently sharing your situation with us all. My struggles and fight with secondary progressive MS hit a wall with a doctor who insisted on repeatedly treating me with antibiotics for UTIs. I knew I couldn’t keep that up and found a fantastic urogynecologist at Northwestern Univ. who has a totally different approach which is VERY successful.
Hang in there! I agree this covid has made all other diseases not important! I’m praying for you🙏😞