caring for the survivors…

I’m a “survivor”. A cancer survivor. And my question is…

How well does your medical system look after survivors. The people, like you and I, who have actually been saved by the drugs, interventions and modern medicine?

As a breast cancer survivor I feel abandoned by my medical system. My ongoing health and the quality of life I have during my survival feels of no interest to my doctors and health system.

Take them in. Treat them. Then send ’em on their way. This is what our health sytem appears to be set up for.

But what about the residual effects from the cancer or the treatments? We have chemo plans and treatment plans. Where is the survival plan?

ASCO (the American Society of Clinical Oncologists) has a statement. They have recognised the need for ongoing support for those the medical system has fought so hard to save. Their statement can be found here: http://connection.asco.org/Magazine/Article/ID/3440/ASCO-Issues-Recommendations-for-Improving-Cancer-Survivor-Care.aspx

“Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers,” said 2012-2013 ASCO President Sandra M. Swain, MD, FACP. “We can’t let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO’s statement provides a roadmap for closing the gap in survivor care.”

Their recommendations are:

Promote patient-centered coordinated care through the use of shared-care models.

Increase adoption of quality improvement programs, such as QOPI®, which help physicians monitor and improve care for all survivors.

Expand research on long-term and late effects to develop the evidence base.

Strengthen the education of health care providers on survivorship care.

Educate and empower cancer survivors and their families to advocate for their unique needs.

As a recent breast cancer survivor in Australia I have seen none of this. I have not, so far, had a medical professional ask me “How are you?” or “How are you coping?”. And, I am desperate for someone to ask, since I feel so lost in my survivorship.

I have recently changed to a new doctor. At my next appointment I will be asking for a plan. For some help with working this all out. For help with trying to address and resolve the residual effects of the drugs and treatments.

If you are a survivor, how have you found the follow-up from your medical professionals, team and system?

❤ Jenn

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9 thoughts on “caring for the survivors…

  1. The Savvy Sister

    This is exactly the reason my partner and I are developing a program to help survivors create their own survival plan …no matter what stage of cancer they’re in. There is a serious need for a program like this and we are excited to help as many people as we can!! if you would permit me to give the web address…if not you can delete (I hate gratuitous self-promotion) http://www.CancerPlan4Life.com

    Reply
  2. Mags

    Hi Jenn, I am a “new” survivor as I just had today my one year mammo and finished radiations last month.
    In my hospital they organised a monthly meeting for young women who had/have breast cancer and are going under treatment. Few of us decided to still meet up once a month somewhere even if we are post treatment. Some are the girls are 2 years post treatment and still come regularly. I realised how those meetings are important for me… as I need sometimes “to talk about cancer”.
    On top of that there is a follow up with the surgeon (one every 6 months), with the oncologist (same), I am part of a trial for the fear of recurrence…
    I still have to go to the hospital more than I thought…
    I am part of a Facebook group as well for young wonen with breast cancer and they are supporting each other a lot.
    I feel like I have a lot of support but as I said, I am a new survivor…

    Reply
    1. jennt28 Post author

      Hi Mags, I love your blog!

      I definitely feel supported by other women who have or have had breast cancer. I feel the lack of support is from our (my) medical team and the medical system.

      The treatments for breast cancer have left me and others with residual and ongoing side effects, and I feel that it is in this area that the support is lacking for me. How have your doctors been with helping you with these left over side effects if you have any?

      Jenn

      Reply
      1. Mags

        Hmmm I just started the hormonal treatment and I am lucky not to have any side effects for the moment. Not sure what will be the medical help when/if I need some.
        I guess I will be able to tell you more about my own experience in a little while..
        Btw I love your blog too you really write beautifully.

  3. Anonymous

    Hi Jenn
    I know we have chatted briefly via BCO (a while back) and I still read but very rarely post on the BCO Australian / Kiwi forums.
    For me Jenn you have hit the nail on the head in relation to medical aftercare or lack of it post initial cancer treatment. The Medics treat the physical (not always – look at LE) and forget the emotional care! They ignore the many side effects that are the side effects of the cancer treatment, as if they are invisible and we all should be thankful because we are alive. I talk to many women across the world who are BC survivors and this is a problem across the globe. Thank you for raising this and if I can be of any help taking this forward (however small) give me a shout.
    Hils

    Reply
    1. jennt28 Post author

      Thanks for your response Hils. Yes, we have chatted on BCO 🙂

      I’m really only just getting my energy and “drive” back and have been wondering how I could move forward and help others. This is just a seed of an idea so far, but survivorship is really where I am being drawn to. Will let you know if I come up with something to move forward with.

      Jenn

      Reply
  4. Nancy's Point

    I think things are changing slowly and survivorship programs are being offered in larger facilities. For me personally, I have found the support following my formal treatment to be lacking. In fact, recently I parted ways with my oncologist due to many reasons, but part of it was a lack of support for the issues I now struggle with. Thanks for the post.

    Reply
    1. jennt28 Post author

      Thanks for your comment Nancy. There are so many of us that seem to share these same challenges after we finish treatment. For us, cancer will forever be a huge part of our lives. For our doctors, we are no longer cancer patients and they move their attention to those who are still needing medical assistance.

      We need a new type of medical professional. A position specifically set up to assist survivors with their ongoing needs. Not just medical, but physical and psychological.

      Reply

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