Oncology + Palliative Care = Winning Team

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Right after my FBC diagnosis (f-bomb breast cancer for new readers), my husband and I had an information gathering week. After a series of diagnostic tests to determine the extent of the disease, we had a series of meetings to interview doctors to determine who would become a part of my/our health care team.

One big misnomer in our culture is that doctors (solely) develop a patient’s plan of care. No. No. No. This could not be farther from the truth! Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.

After the testing was complete, we had meetings and interviews with the following doctors:

  • Two surgical oncologists (surgeons who specialize in breast cancer)
  • Three medical oncologists (doctors who specialize in using medications to treat cancer)
  • Two radiation oncologists (doctors who specialize in radiation of cancer)
  • Two plastic surgeons (doctors who specialize in reconstruction after a mastectomy)
  • One palliative care physician (doctor who specializes in pain management)

Whoa. Whoa. Whoa. Are you wondering, “Why palliative care?” Most people hear the phrase “palliative care” and think “buy the plot… she must be dying.”

We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief. If you take only ONE thing from this blog post (though I hope that you take more!), please learn that palliative literally means the relief of pain. This is such a pervasively-misunderstood concept in our culture, even in health care. Don’t even get me started.

Well, I already got myself started, so let me tell you that as a nurse and now a patient, I am all too familiar with the fact that surgeons and oncologists are not experts in pain management, despite inflicting a great amount of pain on their patients, which is quite an oxymoron, if you ask me. But it’s the truth. The silver lining is that there is an area of specialty focused on relieving pain and symptoms and it’s called… palliative care!

In addition to relieving the pain, symptoms and stress of ANY serious illness, including FBC, palliative care strives to prevent or treat as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social and spiritual problems related to the disease.  The Palliative care team (comprised of doctors, nurses, social workers, nutritionists, chaplains, volunteers and even music therapists) works in partnership with the primary doctor. It’s a collaborative, team-oriented process to ensure that YOU, the patient, are cared for from every possible perspective.

Hellooooooooooo?  Who WOULDN’T have Palliative Care as part of their health care team?

Incorporating palliative care into a patient’s care from the time of a diagnosis is deeply important to me because I have witnessed the benefits of palliative care as a nurse and experienced the benefits of palliative care as a patient. Consequently, I want every person who has to go through the wretched treatment for this disease to have access to the benefits of palliative care.

Such benefits include:

  1. Pain management
  2. Symptom management (e.g., fatigue, anxiety, shortness of breath, nausea, depression and constipation)
  3. Coordination of care
  4. Improved quality of life

Because the side effects of the disease and its treatment can linger… and linger… and linger, cancer has the potential (likelihood?) to become a chronic issue. Speaking of which, nearly a year after my treatments are over, I still can’t remember much of anything, courtesy of chemo brain. I also still can’t feel my toes, courtesy of the chemotherapy-induced neuropathy.

The great news is that the fields of oncology and palliative care are beginning to work together more consistently from the time of a patient’s diagnosis. This has traditionally not been the case because of the assumption that palliative care is only helpful at the end of life. If your health care team is unaware of or hasn’t quite embraced this concept yet, YOU can serve both as an educator on the topic (using the information included in this post) and also as an advocate for yourself by seeking a palliative care consultation.

In fact, consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is becoming acknowledged as a best practice for patients.

Finally (!) it is no longer the case that palliative care is consulted only at the time of a patient’s death, which is magnificent silver lining, if you ask me!

PS – If you ever have any questions about palliative care, please don’t hesitate to ask me!  I’m happy to help in any way.

 

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Comments

  1. says

    Hollye, the second person I called after getting my diagnosis was my pain management doctor, who I had already been seeing for a number of years due to another painful disability. He has been invaluable to me for over 13 years, and I was so thankful (?) I already had him in place, so to speak, we have known each other for so long, I sincerely trust him with my needs to stay as comfortale as possible. But he believes now I am a prime candidate for some type of assisted living. I tend to agree with him, because of a fall issue, I have broken many, many bones and need supervision, and the evidence my breast cancer has spread to my bones. My partner, bless his heart, thinks I am "well" now because I have survived for 6 years. He even wants me to stop seeing my PM doctor, thinks it is now time to "get on with life". This frightens me more than I can say, because I need a team of people who are acting in my best interest, especially if I come to the point of the end of life But, being free of disease or "well" has nothing to do with the amount of time you stay alive after first diagnosis. I am seeing my oncologist in two weeks for the frightening results of blood work and radiological studies that speak of metastases. Am I frightened, yes, but I know I don't have to start over and explain anything to the person who is in charge of helping me decide my best avenue to maintain the quality of my life. If I need help with daily living needs, I am humble enough to listen to my options. Does this sound as if I am giving up to you? Good to talk to you again, and I really appreciate your input. Fran

    • says

      Dear Fran,
      Thank you so much for your thoughtful comment. Does it sound like you are giving up? Not even remotely!!!
      I'm so sorry to hear about our broken bones. I think that you need to do exactly what feels right for you and if having your team of healthcare providers in your life feels right, then that is what would be best.
      Please take care and stay in touch.
      Warmly,
      Hollye

  2. PATTI WHITE says

    Hollye,

    This is the best definition of Palliative Care. Thank you for putting it into words that any laymen (or Women) can understand.

  3. Kim C says

    Another alternative is acupunture for chemo side effects such as, neuropathy (tingling and pain in hands and feet) and nausea. Melatonin can help with sleeplessness and anxiety. Meditation and creative visualization techniques can go a long way to help with the feeling of disconnectedness from our bodies, such as pain, anxiety and depression. These techniques calm the mind to help us cope with the often difficult information given to us at the time of diagnosis and physical challenges during treatment. They're also a powerful tool for recovery as they helped me to find my confidence and stability once again post cancer diagnosis. These are wonderful alternative medicines because they have nothing to do with taking more medication! – which is definitely another silver lining!