Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

A plea to oncologists to confront the treatment of rare diseases

Don S. Dizon, MD
Conditions
December 30, 2012
Share
Tweet
Share

I only met her once; she was young—in her mid-thirties—and she had been diagnosed with ovarian cancer during her pregnancy. Following chemotherapy and the delivery of a healthy baby, she underwent a hysterectomy and staging. She was ultimately diagnosed with a rare ovarian cancer: small cell carcinoma. She underwent postoperative chemotherapy and had gone into remission.

Unfortunately, it was short lived, and she had been referred to me following her recurrence. I still remember that meeting—she looked scared but remarkably well; the only sign of cancer was the lack of hair on her head. She was nervous, searching for answers, desperately trying to remain hopeful, in control.

We discussed statistics, prognosis, treatments. I struggled to answer her questions; she had wanted specific information about small cell carcinomas of the ovary: what did it mean that she had recurred? What should be done to treat this type of cancer? I had told her it was not curable and that one day (hopefully not soon) she would likely succumb to her disease. But, she was a new mother—she wanted to fight, to explore every option.

We talked about standard treatments and clinical trials. Her tumor was rare—any experience in treating women with this cancer (including mine) was anecdotal. A path to remission, a direction towards the most promising treatment for her cancer was unknown.

At the end of the day, I am not sure I helped very much. I recommended a standard treatment approach; one that worked for ovarian cancer in general. She was eligible for several clinical trials, though none of them were specifically for small cell carcinoma. I gave her informed consents for a couple of studies and asked her to consider them. I told her I would keep my eye out for anything promising, or else she could see me again if there was a need to switch her current treatment.

As she walked out of my office, I was overcome by the unfairness of her situation, of life itself. Why would she be dealt this particular card? She who had just become a mother? Despite our work on genetic susceptibility and risk factors, we cannot predict who specifically will go on to be diagnosed with cancer, let alone what type of cancer they will develop. There are limitations to what the evidence tells us in oncology, particularly when it comes to rare tumor histologies like hers.

I was reminded of this patient and this encounter when I read an article entitled, “Lack of Data” by Dr. Julie Maher. Dr. Maher was a physician and, like my patient, a new mother. Like my patient, she was also diagnosed with small cell carcinoma, although in her case, it began in the cervix. She discusses her diagnosis and then her recurrence, treatments, and searching for ways to treat her cancer. She lamented the lack of evidence-based data to help guide the treatment of rare tumors.

There is a plea in Dr. Maher’s piece for the oncology community to confront the treatment of rare diseases. How to do this is challenging because randomized clinical trials (the evidence-based gold standard) will take time—a lot of time. Still, there is a concerted effort underway to address rare tumors. As an example, the Gynecologic Oncology Group (GOG) has assembled the Rare Tumor Working Group to conduct these trials.

But what Dr. Maher is asking for is a much more immediate solution than even what the GOG has implemented, because she (and my own patient) did not have the luxury of time. Indeed, both Dr. Maher and my patient ultimately succumbed to their cancer. I must admit, even to this day, I lament not being more helpful in guiding my own patient in an “evidence-based” direction (because the evidence does not exist).

I encourage all to read Dr. Maher’s piece, as the words come from one of “us,” taken all too soon. As an oncologist who has devoted himself to the treatment of women’s cancers, I am interested in how to respond to her call for action. Indeed, it is a discussion I am ready to be a part of.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

Prev

Common criticisms of concierge medicine that deserve to be answered

December 30, 2012 Kevin 26
…
Next

Physician credentialing needs better standardization

December 31, 2012 Kevin 1
…

Tagged as: Oncology/Hematology

Post navigation

< Previous Post
Common criticisms of concierge medicine that deserve to be answered
Next Post >
Physician credentialing needs better standardization

ADVERTISEMENT

More by Don S. Dizon, MD

  • As an oncologist, this is the hardest role I play

    Don S. Dizon, MD
  • Why physicians should acknowledge the validity of second opinions

    Don S. Dizon, MD
  • A patient who taught an important lesson in doctoring

    Don S. Dizon, MD

More in Conditions

  • Affordable postpartum hemorrhage solutions every OB/GYN should know

    Frank I. Jackson, DO
  • How are prostate exams done and why you shouldn’t avoid them

    Martina Ambardjieva, MD, PhD
  • Airlines’ policy ignores your do not resuscitate (DNR): Discover why and some ways to protect yourself

    Althea Halchuck, EJD
  • How coaching transforms care for people with multiple sclerosis

    Jessica Singh, MD and Liz Kiniry
  • Integrating vitamin education in mental health care

    Scarlett Saitta
  • Mumps orchitis still causes infertility years after childhood

    Oluyemisi Famuyiwa, MD
  • Most Popular

  • Past Week

    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance
    • How AI, animals, and ecosystems reveal a new kind of intelligence

      Fateh Entabi, MD | Tech
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • A physician employment agreement term that often tricks physicians

      Dennis Hursh, Esq | Finance
    • Confronting the return of measles and vaccine misinformation [PODCAST]

      The Podcast by KevinMD | Podcast
    • The hidden reason your vacations never feel like enough

      Kent DeLay, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Who gets to be well in America: Immigrant health is on the line

      Joshua Vasquez, MD | Policy
    • Why specialist pain clinics and addiction treatment services require strong primary care

      Olumuyiwa Bamgbade, MD | Conditions
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • When medicine surrenders to ideology

      Anonymous | Physician
    • How just culture can reduce burnout and boost health care staff retention

      Olumuyiwa Bamgbade, MD | Physician
    • Why embracing imperfection makes you truly unforgettable

      Osmund Agbo, MD | Physician
    • Affordable postpartum hemorrhage solutions every OB/GYN should know

      Frank I. Jackson, DO | Conditions
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 15 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance
    • How AI, animals, and ecosystems reveal a new kind of intelligence

      Fateh Entabi, MD | Tech
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • A physician employment agreement term that often tricks physicians

      Dennis Hursh, Esq | Finance
    • Confronting the return of measles and vaccine misinformation [PODCAST]

      The Podcast by KevinMD | Podcast
    • The hidden reason your vacations never feel like enough

      Kent DeLay, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Who gets to be well in America: Immigrant health is on the line

      Joshua Vasquez, MD | Policy
    • Why specialist pain clinics and addiction treatment services require strong primary care

      Olumuyiwa Bamgbade, MD | Conditions
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • When medicine surrenders to ideology

      Anonymous | Physician
    • How just culture can reduce burnout and boost health care staff retention

      Olumuyiwa Bamgbade, MD | Physician
    • Why embracing imperfection makes you truly unforgettable

      Osmund Agbo, MD | Physician
    • Affordable postpartum hemorrhage solutions every OB/GYN should know

      Frank I. Jackson, DO | Conditions
    • Why kratom addiction is the next public health crisis

      Muhamad Aly Rifai, MD | Meds
    • Why taxing remittances harms families and global health care

      Dalia Saha, MD | Finance

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

A plea to oncologists to confront the treatment of rare diseases
15 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...