I am happy to report that there was a lot more attention at this meeting than there has been in years past to what we refer to as “survivorship care.” However, I am not sure I like the term. I worry that it puts an emphasis on those who have completed treatment and may be “cured” and separates them from patients who are being treated for a recurrence or metastatic disease.  When we think about the collateral damage that a woman can live with long after treatment, and how women can manage it, I think palliative care is a better way to discuss what we are talking about: acknowledging and alleviating short- and long-term side effects.

Many people have previously associated palliative care with end of life and hospice care. But palliative care actually involves addressing and treating the symptoms of cancer and its treatment. There were several sessions on palliative care at this ASCO meeting, which I think reflects the growing understanding that an oncologist’s job is not only to save your life but also to address, and, when possible, prevent the consequences of treatment.

There is no question that palliative care benefits cancer patients. But as one study presented at ASCO found, it can benefit caregivers, too. In this study, called ENABLE, 207 patients with advanced disease (a euphemism for metastases) were randomized to receive 24 months of phone-based palliative support immediately post-diagnosis or three months after their advanced cancer diagnosis.

The researchers reported that the caregivers caring for patients who started palliative care right away experienced less depression and had a better quality of life than the caregivers of the patients whose palliative care was delayed for three months. The patients who received the immediate palliative care also had longer survival.

This will not come as a surprise to those of us who have dealt with a cancer diagnosis or have cared for someone with cancer. Although this study only looked at patients with metastatic disease, I think we all need palliative care for our collateral damage. Palliative care should start when treatment starts.

Oncologists, surgeons, and radiation therapists are good at treating cancer, but they are not as good at dealing with the consequences of cancer and its treatments and maybe they are not the right ones to do it. Many cancer centers are starting to acknowledge this with what they call Supportive Care teams including specialists in palliative care.  I can only cheer and say it is about time!

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3 Responses to Survivorship Care and Palliative Care

  1. Gwen O'Brien says:

    Oh the collateral damage after 12 years of being cancer free…the physical pain, the emotional pain. It’s still raw. And it makes me wonder if I am crazy….I’m grateful I’m still alive, but oh the collateral damage.

  2. Ginny Sain says:

    I am so glad they are looking into Supportive Care,etc. My oncologist was terrific but I felt I’ve been on my own since then. Living a ways from the treatment center I’ve not been able to take advantage of certain offers. Thank you.

  3. 65chevy says:

    While starting palliative care early has benefits for the caregiver.. what real benefit does it have for the terminal patient! I’m sorry.. Advanced Breast Cancer is a terminal condition. THere is no cure for it, and today’s treatments for it are extremely toxic.. However we seem to have more choices than people with earlier stage cancers where the collateral damage can be worse than the cancer itself..

    Imagine feeling well, enduring treatment, and being told that you are only going to get palliative care! That is exactly what advanced breast cancer patients are told.. We are told we are going to get this, but we don’t. We get nothing but crap treatments that may or may not work.. Tumors are not tested, we don’t even get the genetic tests that we want. Nothing really happens unless we either force an issue, or have an oncologist who has more smarts than usual..

    I did not like being told I would only be treated palliatively… It’s depressing… I didn’t even get any palliative treatment.. but then I was savvy enough to figure out for myself what sort of treatment is the best for me.. I am basically treating myself, with some prescriptions from my oncologist at this point in time..

    Palliation is a loaded term that sends a lot of us into a depressive spiral that leads to an earlier than necessary death… Sorry.. From where I sit, that’s what I see..

    I don’t see it applying to me.. and I don’t see any of the treatment centers that I’ve been to applying it to people with my condition.. If only for the caregiver..

    I am the only one who sees that the benefit is for the caregiver? What about the patient? We really don’t count because we are terminal.. Palliate us so that we remain sweet docile and quiet.. It is the caregiver that seems much more important than us..

    Supportive care, and compassion seem to be slogans with no truth behind them..

    Patients need to reach out and grab whatever of this morass with as many claws as they can find because I tell you, the medical establishment doesn’t dole out these candies to us as a matter of business.


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