Tips for the Newly Diagnosed

Posted on: December 19th, 2014 by
22

This week, someone I know told me her mother was diagnosed with breast cancer a few weeks ago. She described this experience as a rollercoaster, a very fitting metaphor, and then asked for my advice. My first thought was, “Damn, another person diagnosed with this beastly disease.” My second thought was to offer some advice she and her mother would find helpful.

So I gave some advice.

And that got me thinking that I should write a post to address this very important topic. I remember being a breast cancer newbie as if it were yesterday, and I experienced so much confusion and emotions.

I’m hoping this post helps those who are newly diagnosed and I’m hoping that others reading this post will add their advice in the Comments section. After all, the breast cancer community is a community where we help each other.

That being said, here are just some of my tips for coping with a new breast cancer diagnosis.

You can experience a wide array of emotions — such as grief, fear, panic, anger, depression, disbelief, and sadness. This is normal. Any emotions you are going through are normal considering the heavy weight of diagnosis. Don’t pressure yourself to feel or react a certain way or to react to your diagnosis the way others expect you to. Let yourself scream, cry, punch a pillow, and so on. There’s no right way to handle cancer.

Don’t feel you must rush hastily to make medical decisions. Newly diagnosed people often feel pressured to decide a treatment plan immediately. While you want to address your illness promptly, you have time to consider your options. In addition, you need to make the decision that is best for you.

Choose doctors you feel comfortable with. Too often we don’t speak up regarding our own health care. Seize the reins of your own medical care and advocate for yourself. Feel free to get a second or even third opinion. If you are uneasy with a doctor, following your gut instincts is a good game plan.

Seek support. Having breast cancer can feel isolating. Take advantage of the wide array of support systems available. If you have a supportive family, spouse, etc., feel free to open up to them. The American Cancer Society has various programs and services. For example, when I couldn’t drive due to surgery, the organization paid for my cab rides to and from doctor appointments. Support groups and/or counseling may be helpful. If your location has a Gilda’s Club, I strongly recommend this support network. When I was newly diagnosed, I walked into Gilda’s Club Chicago, and it was one of my lifelines. If you are social media savvy, consider participating in #BCSM (Breast Cancer Social Media) tweetchats on Mondays at 9-10 p.m. US Eastern time. A wide variety of excellent breast cancer blogs are available to help you feel less isolated.

Don’t compare yourself to others’ treatments/outcomes. Each person’s breast cancer is different, kind of like a fingerprint. Don’t compare your treatments and outcomes with those of others.

Don’t pressure yourself to “get over it.” I’ve been told this on several occasions. Breast cancer is a big deal, and everyone heals physically and emotionally at a different pace. Be patient with yourself. Be kind to yourself.

I hope you have found these tips helpful. Seek out the help you need and just put one foot in front of the other, and you will get through this ordeal one step at a time.

"Diagnosis"

“Diagnosis”

For those who have/had breast cancer, what advice would you offer a newly diagnosed patient?


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22 Responses to Tips for the Newly Diagnosed

  1. Kimberly had this to say about that:

    Great post! Great tips! Can’t think of anything to add, so I’d say you pretty well covered it.

  2. Elissa Malcohn had this to say about that:

    Excellent points! With respect to your second point, I have asked doctors how long I had before I had to give them a decision. That gave me time to do my own research. (I was diagnosed earlier this year and recently finished active treatment: surgery/chemo/radiation.) For example, my GP had offered to set up my surgical consult right after she gave me my diagnosis, but I asked her for 24 hours so that I could research the surgeons on my own. I then faxed her my first and second choices (got my first choice). My oncologist gave me a week to decide whether to go ahead with chemo after I had asked him how long I had to decide. I ultimately went with his recommendation and got back to him in three days, but I felt more confident about that choice and more prepared to move ahead.

    “One step at a time” — living in the present — helped me. I take each day as it comes and cut myself a lot of slack.

    The day I received my diagnosis I called the American Cancer Society resource center (http://www.cancer.org/aboutus/howwehelpyou/contactus/index), whose representative spent a good chunk of time answering my questions. He also referred me to two ACS publications — a 12-page document of post-surgical exercises to help with healing (http://www.cancer.org/cancer/breastcancer/moreinformation/exercises-after-breast-surgery) and a 133-page guide to breast cancer (http://www.cancer.org/cancer/breastcancer/detailedguide/index). The guide helped me prepare questions for my surgeon. I also called the facilitator of my breast cancer support group. I had gotten both numbers in advance (“just in case”) from the website of my local hospital.

    After I got my diagnosis I also spent time gathering inspirational videos and music that could get me “in the zone” (both meditative and fighting spirit) during treatment.

    The one suggestion I would add is to do what you love as much as you can. I did what I call “meditation doodles,” especially during chemo. They let me be creative in a non-pressured, free-flowing way. The facilitator of my BC support group found her meditation/distraction in scrapbooking. Especially at the beginning, when so much seems to be happening at once, I had to find a balance between preparation and decompression. I learned — even more so than before — to honor my temperament and to do what I felt was right for me.

    • Beth L. Gainer had this to say about that:

      Elissa,

      Thank you for your comprehensive comment! I’m sure this will be a help to anyone newly diagnosed with breast cancer.

      Good for you for being so proactive and pacing yourself well through this crisis, rather than rushing head-on into possibly the wrong treatment protocol for you.

      Thank you for suggesting meditative exercises and to do what one loves as much as one can. I wish I had done these two at the time of my diagnosis.

      Thanks for the sound advice and information.

  3. Sharon Greene had this to say about that:

    Wonderful post Beth! My addition would be to take another person with you or a tape recorder to your early doctor’s appointments as you (or at least this happened to me) is you forget most of what they tell you. The only message I would remember is I Have Cancer!! This becomes unhelpful very fast.

    • Beth L. Gainer had this to say about that:

      Sharon,

      Thank you! Excellent advice! It really does help to take someone with you and/or a tape recorder. It’s hard for newly diagnosed people to focus on what the doctor says when all that’s running through their minds is “I Have Cancer!”

      Great advice and thanks for your input.

  4. Kathi had this to say about that:

    Excellent tips, Beth. Wish there were no need for them ever, huh? xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Thanks, Kathi. Yes, I wish there was never a need for such advice. I wish cancer didn’t exist. Terrible disease.

  5. Bethany Kandel had this to say about that:

    Great article Beth. I’d love you and your readers to know about a resource I created to help them financially once diagnosed, http://www.BreastCancerFreebies.com. On my website you can find all sorts of wonderful individuals and organizations offering FREE wigs, hats, retreats, magazines, prosthetics, and all sorts of other financial and emotional support to help them on their journey. And I second Kathi’s comment….too bad there is such a need for this all! Be well. Bethany Kandel

    • Beth L. Gainer had this to say about that:

      Bethany,

      Thank you so much for sharing this valuable resource. I so appreciate it, and I know readers will find this helpful.

      Sharing resources is proof that the online breast cancer community is a wonderful support system.

      Thank you for reading and commenting.

  6. Barb had this to say about that:

    In addition to all of the excellent ideas above, I would add that one should ask for copies of all tests, scans, clinician notes etc. Like having a second set of ears at appointments, having copies allows you to review at your own pace.

    • Beth L. Gainer had this to say about that:

      Barb, this is a great suggestion. I wish I had done this when I was newly diagnosed. This would be helpful to any patient, not just newly diagnosed patients.

      Thank you for this suggestion.

  7. Cancer Curmudgeon had this to say about that:

    All of these are great! I so wish I’d known all of this back then. Thanks for providing such a useful list, tho’ I hope I never need to refer anyone I know to it.

    • Beth L. Gainer had this to say about that:

      Hi Cancer Curmudgeon,

      Thank you! I also wish I’d known about the tips I wrote about, as well as those provided in the comments section.

      Like you, I hope to never have to refer anyone else to this post.

  8. Susanne had this to say about that:

    Makes me wish I’d found something like this when I was scouring the net in those early days. Nice job.

    • Beth L. Gainer had this to say about that:

      Thank you Susanne,

      Yes, when I was diagnosed way back, I wish I had this information, and I wish I had such a supportive online community.

      Thank you for reading and commenting.

  9. Pingback: Weekly Round Up: Getting Off The Hamster Wheel | Journeying Beyond Breast Cancer

  10. Beth L. Gainer had this to say about that:

    Thank you, Journeying Beyond Breast Cancer, for including this post in your weekly Round Up! I so appreciate it.

  11. Dr. Michael Haley had this to say about that:

    May I be so bold to suggest adding an alternative plan as well? That is, to find a well versed alternative care physician such as a Naturopath, D.O. or even M.D. that is familiar with natural options for treatment including diet and identifying the things that my be contributing to health problems. Many will work along side any medical choices you are making and help you to strengthen your body for a faster recovery. I personally like the position of The AnnieAppleseed Project.

    • Beth L. Gainer had this to say about that:

      Dr. Haley, you can certainly suggest an alternative plan. I don’t know enough about the effectiveness of natural options and how they complement standard medical therapies.

  12. Nancy's Point had this to say about that:

    Hi Beth,
    This is a really good list. Not sure what I’d add. Honor your true feelings always tops my list and don’t feel pressured to “do” cancer a certain way. But you covered both. Your list will definitely help others. I sure could have used it. Well done, Beth.

    • Beth L. Gainer had this to say about that:

      Thanks, Nancy. I always respect your perspective. I am hoping this list is helpful to others. As you know, diagnosis is terrifying.

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