Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.
Extraordinary second opinion stories
The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.
PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.
After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.
“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”
When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.
“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”
“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”
Pointers on second opinions
Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:
- 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
- Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
- “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
- Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
- “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
- Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology program, Cleveland Clinic’s MyConsult and SecondOpinionExpert)
More members chat about second opinions
On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:
- Multiple sclerosis
- Fibromyalgia
- Mental health
- Parkinson’s disease
- ALS
- Epilepsy
- Cancer and lung cancer
What’s your second opinion story? Share it in the comments.
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1986 diagnosed with colon cancer. Needed surgery ASAP. Felt something very wrong after surgery and called my Mother as I felt I was dying. She contacted my family Dr who came to examin me in hospital I was “timponic”, stomach extremely bloated. Pain continued. At 3 month recheck was Told cancer was back. Alarms went off and I heard voice in my head “Get your records, get second opinion”. I walked to the Dr who diagnosed me who became very upset reading my chart. Surgeon did NOT do a resection, instead scraped tumor and darned my colon like a sock leaving a VERY small opening for feces. He picked up phone and called Moffett Cancer Ctr at USF for me to be seen that day. I was admitted same day and operated on next morning by a wonderful doctor. He not only saved my Butt (literally) he waved his fee that was not covered by my insurance. I am alive today because caring doctors stepped up to the plate. The first surgeon is still operating last I heard but now with a laser. I was Informed by a lawyer there is no recourse and could be sued for defamation of character and my family unable to use hospital if I went public. Moffett Cancer center is awesome! Side note: My husband and daughter had mono the same week I had second surgery. Three years later I was diagnosed with FMS. I believe I contracted Mono while my immunity very low post op.
I became my own Health Advocate and continue to educate myself. I speak out when my little voice says ” something is not right”.
I have PF and at 771/2 have been told I am too old for a lung transplant, am I??
Hi Allen,
Please consult with your doctor regarding your medical condition and eligibility for a transplant. While we encourage patients to share about their experiences, we do not provide medical advice.