5 posts tagged “tips”

Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted January 3rd, 2018 by

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 programCleveland 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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10 hot weather and sun-safety pointers for people with lung cancer

Posted July 21st, 2017 by

On PatientsLikeMe, nearly 7,000 members are sharing their experiences with lung cancer. The dog days of summer have arrived, so we’ve rounded up some tips for handling the weather’s impact on breathing troubles and the side effects of chemo, radiation and surgery.

Hot weather tips for people with breathing issues

The American Lung Association reminds those with lung disease that your lungs might be working harder in the summer air. Taking some extra steps may help you breathe easier.

  • Hot and humid weather can cause airway inflammation and add to breathing difficulty. Tip: Use air-conditioners (with clean filters) in your home, if possible.
  • Air pollution (which worsens in the summer due to increased ozone from smog) can also bother your breathing when you have lung disease. Tip: Keep tabs on the air quality forecast in your region, and avoid high-pollution areas (such as jammed highways), if you can.
  • When your body is working harder to breathe, you can easily become dehydrated. Tip: Drink plenty of cold water, even if you don’t feel thirsty.

Sun- and heat-safety for people undergoing cancer treatment

Certain kinds of chemotherapy can make you more sensitive to the sun. Radiation therapy sites and surgical scars also call for TLC in the summer. Keep these tips from the National Comprehensive Cancer Network in mind:

  • Ask your doctor if your treatment makes you more sensitive to the sun (sometimes called “photosensitivity”) or heat. In general, you may overheat or get sunburned much more quickly and easily than usual.
  • Try to avoid time in the sun when its rays are strongest, from 10 a.m. to 3 p.m.
  • Use a “broad-spectrum” (UVA- and UVB-protection) sunscreen with an SPF of 30+, and apply it often.
  • Seek shade (under trees or an umbrella) and dress to protect your skin from the sun – but keep in mind that clothing is no substitute for sunscreen.
  • Wear a hat to protect your face and head, especially if you’ve lost your hair due to chemo.
  • If you’ve undergone radiation therapy, know the precise spots where you were exposed because these areas will be highly sensitive to sunburn. Ask your doctor about a good sunscreen for your extra-sensitive skin.
  • If you’ve had surgery, keep your scars protected from the sun with clothing and sunscreen. Members who’ve had surgery also say their scars are sensitive to cold air-conditioning, so you may need to cover your skin indoors, too.

How does the hot weather affect you? Any tips to add? Join the conversation in the Lung Cancer forum.

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