When a New Study Shakes a Pillar of Care

A breast cancer survivor recently emailed me, upset by media reports on a new study, the results of which led researchers to the conclusion that many women with early breast cancer do not need surgical removal of the cancerous lymph nodes in the axilla (armpit).

This is a huge deal, since patients who undergo the surgery are far more likely to have complications like infections, abnormal sensations, fluid collecting in the armpit and lymphedema. The survivor who emailed me had the surgery and now suffers from chronic arm problems. With her permission, this is how I responded:

(Note: I am exceeding my usual 250-word limit for this blog post in order to share all the parts of the message that might be useful to others) 

As the Healthy Survivor you are, here are some things to think about that may help:

• You are healthy now, and that is good.
• You made your decision(s) in the past, before these studies and articles were out. Since you can’t go back, your wishing you hadn’t done it will never help you get good care or live as fully as possible (i.e., regret will never help people be Healthy Survivors).
• The longer you and I survive our treatments, the more we will hear of better, safer, less toxic treatments than the ones we received. I had treatments that no oncologist would prescribe today because we now have better -- more effective and less toxic -- options. I am at peace, because the treatments I received were the best options at the time AND THESE TREATMENTS GOT ME TO TODAY.
• Feel free to feel whatever you feel, including anger and renewed grief. They reflect your attempt to come to terms with this new information and then move on. So find a way to express your anger (like emailing me!) and grief (like crying). It’s all good. Then you can let it slip into the past and embrace the life you have today.
• Remind yourself that everything has been done with your best interests in mind; nobody did anything with intent to hurt you. Remind yourself that many, many women are in your exact shoes regarding lymphedema. Remind yourself that some women let it ruin their lives and others find ways to adjust to the reality of their unwelcome—and now avoidable—chronic condition. 

Comments

[@chemo_babe]

thank you, wendy. this is very wise.

[Suzzann Cummings]

Thank You Dr. Harpham on this very important post. When I heard the news on this, I experienced all of those emotions- angry and sad. But 5 yrs ago, my surgeon felt that this was my best option and I agreed. So now, I live w/lymphedema. But, the outcome could have been far worse and there's days I need to give myself reminders...hey, I'm alive and healthy and here!

[Cyn]

Thank you for bringing such clear, to-the-point context to this discussion, Wendy.

[Jackie Fox]

Thank you for this wise post. Treatment is a moving target and like you said, we make the choice based on best options available at the time. I realize I'm lucky because I don't have lymphedema, but I did have 10 nodes removed during my mastectomy as a precaution for an alarmingly large amount of DCIS. Some day that choice may seem like a blunt instrument. But I have no regrets. I spent one night in the hospital after my mastectomy; 30 years ago Betty Rollin spent a week. We've got a long way to go but it is getting better.

[Basababy]

The study stated that women would not need the surgery since it was assumed their subsequent chemotherapy would kill any cancer in the lymph nodes. Yet, I had my surgery after my chemo, back in 1999, and cancer cells were very much still alive and active in my nodes even after all my chemo. No regrets here. The study makes a very, in my humble opinion, risky assumption.

[Andrea Gauthier]

What a precious resource your blog is, a forum to process these events, make sense of them, put them in their context and come out stronger and more at peace with the gift of life today, with all its imperfections...Andrea

[Debby]

Anyone reading Dr Harpham's blog must know by now that her positive thinking helps to bring acceptance and peace into an otherwise unsettling and chaotic life. Continuous positive affirmations about past decisions, with forgiveness on the part of self and others, brings us to a better place mentally and emotionally.

love
Debby

[Wendy S. Harpham, MD]

Debby,
Thank you for letting me know you find the posts to be healing. With hope, Wendy