Survivorship Gains Attention in the Medical World


Improving Cancer Standards for Breast Cancer PatientsDr. Robin B. Dilley, author of In A Moment’s Notice: A Psychologist’s Journey with Breast Cancer and a licensed psychologist.

For those of you who have been treated traditionally by oncology and radiation therapy you may identify with the awkwardness felt when that day of discharge from the oncologist finally came. Now, that “discharge” is being re-examined and explored positive by the Commission on Cancer.

This morning I was listening to Dr. Andrew L. Sainer talk about cancer survivorship treatment. Dr. Sainer is the director of Helen and Harry Gray Cancer Center in Hartford Connecticut. In his short eight- minute audio he covered some very important facts and spoke of the Commission on Cancer. The Commission on Cancer is an important and clearly missing piece of this post treatment puzzle. There are current 14 million Americans living after a cancer diagnosis. 2/3 of that number will survive five years without a recurrence. This rapidly growing population has unique needs that have never been addressed by the treatment team because there has been no team.

For instance, in my case, my oncologist acted as the hub of my treatment for the first five years and because I continued on the estrogen receptor blocker, Femara for an additional five years I continued to see my oncologist twice a year. Then I was discharged. Ten years is a long relationship. It was during a follow-up mammogram that my radiologist said to me that she did not relax until a patient was 15 years out. I remember thinking to myself. “Really? I have to still be on guard.” And sure enough 15 years to the month the ultrasound tech hung—out for a significant amount of time right over my nipple. When I asked her what she was finding, she said, “Something very small.” The radiologist came in and took over the ultra-sound equipment and told me “IT” is very small. Let’s look at “IT” again in three months. This was a different radiologist than the one I had seen previously. I sat up from the table and said, “Maybe you didn’t notice my right breast is missing. I am a cancer survivor. I am not waiting for three months to recheck.”

The good news about this story is that I did follow-up with my former surgeon and had a left mastectomy. The “IT” was DCIS and it was contained (meaning IT had not spread to my lymph nodes). No follow-up was recommended. Again, I initiated a follow-up with my former oncologist. So the fact that the Commission on Cancer is going to provide every cancer patient/survivor with education and comprehensive care by the end of 2015 is quite impressive. What will that include?

First it will include better education to the survivor. The education will include:

  • Knowledge about the disease and therapy
  • Possible late effects of therapy
  • Surveillance of recurrence
  • Screening for new cancer
  • Risk-reduction lifestyles

The Commission on Cancer believes the patient should be empowered with knowledge and not be lost in the transition from treatment to survivorship. I can attest to that feeling after discharge is a powerless one filled with a loud echo of “Now What?” Thus this important word, “survivorship” is now on the Cancer Control Continuum of Care.

Survivorship Care Issues will include a team approach that will include a psychologist or social worker, assessment of rehabilitation issues, late-effects intervention, wellness strategies, and proper transition to your primary care doctor. Each patient should receive a personalized plan of wellness guidelines that include the promotion of physical activity, diet, and body weight. This plan will be discussed with the patient and the family and with primary care physician.Cancer Treatment Standards

It is my opinion that each of us need to responsible for our medical treatment and follow-up and not leave these important decisions to an over-utilized, over-worked, and under-served medical machine. However, most of you know doing treatment of any sort is exhausting, mentally fatiguing, and so overwhelming that just getting through it is the only goal at the moment. But, as treatment draws to a close and energy begins to return it is important to turn your attention and energy to the “what-now?” Once you are in the survivor phase of treatment what is it that you need to do differently to enhance the quality of your life now?

Even though, there is some discussion over the use of the word “survivor” shall we put that aside for now and realize that as a person who has had cancer in the past, we are on a continuum of care and caring for the self, as a survivor is equally important. Unfortunately, cancer is never in the past tense for those of us who have been through-it, but the phase of survivorship treatment needs to be celebrated in life-enhancing choices. Live well today my friends and fellow survivors.

Dr. Robin DilleyDr. Robin B. Dilley, author of In A Moment’s Notice: A Psychologist’s Journey with Breast Cancer is a licensed psychologist in the State of Arizona. Her eclectic practice allows her to cross diagnostic barriers and meet clients in their need assisting them to respond to life in healthy and empowering ways rather than react to life’s circumstances.

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Comments

  1. You must be your own advocate. period

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  2. Reblogged this on After Cancer.

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  3. This article contains some very important ideas. One more that should be added to the ‘treatment plan’ is Integrative therapies. No one should go through either chemotherapy or radiation without the protection of natural strategies. This does include the physical activity, and diet information mentioned in the article. But frankly we are unfair to the humans who develop cancer when the attitude continues to be: “suck it up” and “we’ll deal with those problems (created by conventional treatments) later”. LATER is the WRONG time to do that.
    Otherwise, this is an excellent article.

    I am the founder of Annie Appleseed Project providing evidence-based information on natural strategies, from the patient perspective, online since June 1999.

    Liked by 2 people

    • Ann, Thank you for your response. I totally agree with you that the “suck it up” attitude is not helpful to anyone and that a more mindful and gentle approach with the patient needs to be adapted. This is scary and an emotionally distressing land to have to navigate. There will be additional follow-up blogs that will address integrative therapies as a part of treatment. There is whole new research on the benefits of Labyrinth walking in medical buildings, the use of imagery, and many breast cancer yoga classes are being added to treatment facilities. Thanks for your input. Robin

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  4. Reblogged this on I Will Survive, Inc..

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  5. I have late stage radiation induced lumbar plexopathy and could really do with support and better understanding of this. I am 13 years post treatment

    Liked by 1 person

    • Helensamia, I am a psychologist and not a medical doctor. I looked up your condition this morning and that must be very disappointing and painful condition to cope with. I do not know where you are located but if your family practice doctor does not know where to refer you for help perhaps Susan Love’s work with the army of women can help. I have found acupuncture helpful for nerve pain such as sciatica. I am not sure it would be helpful for the type of nerve pain you suffer with lumbar plexopathy. I hope these ideas help. Robin

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      • Thank you I live in Sydney Australia and at the moment I am being treated at a rehabilitation hospital that specializes in neurological disorders. It is difficult as it is so rare that the doctors do not know what to expect.. The pain is nit so bad it comes and goes but the weakness and difficulty walking is ahuge problem.. Thanks for your reply .. Helen

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