Dear Oncology Doctor,
I write this letter to thank you for saving my life. Without you and the entire cadre of doctors and nurses involved in my cancer treatment, I would not be here today. I understand you are working hard to save as many lives as you can, and for that, I am eternally grateful.
I also imagine you would like to know how your patients are doing once they leave your care. And more importantly, how you might make some improvements in your care that will lead to the best outcomes. So, I write this letter not to criticize in any way, but to let you know how things have unfolded. I write to encourage you to talk honestly with your patients about hurdles they may have ahead so they can be more prepared. Let me remind you of my case.
On December 4, 2009, I was diagnosed with breast cancer at the age of 47. While the year following was one of surgery, chemotherapy, and radiation, I emerged a healthy woman with a good prognosis for a life ahead of me. I was elated to begin living my life to the fullest and hoped things would go back to mostly normal. You were there with me every step of the way over the five years of check-ins until you told me I was good to go. In my excitement, I did not know there would be residual problems in my future, that while certainly not as destructive as cancer, continue to affect my daily life. I wish you had warned me although I understand that in your mind these might seem small compared to cancer.
You recall that I had a lumpectomy along with sentinel nodes removed from my right armpit. About nine months after the surgery, I began to have trouble with my right shoulder. After a while, I realized I needed to see a doctor about it and was prescribed physical therapy for “frozen shoulder”. I completed the therapy over a period of months, and it was helpful. I learned from the physical therapists that frozen shoulder is common after having a lumpectomy and that if I had done the exercises they were prescribing before it became frozen, it could have been avoided. After going through almost a year of difficult chemo and radiation treatments, no one thought to tell me to do some simple exercises to avoid developing a frozen shoulder. And the fact that the physical therapists saw this all the time tells me I am not the only patient who did not get the memo. So please, if you have not already made this change, tell your lumpectomy patients to do those exercises!
“Chemobrain” is real
Since my chemotherapy treatment, I experience both word recall issues and an inability to keep much of anything in my working memory. When I spoke with you about this, you said that many people report “chemobrain”, but that there was no real diagnosis. While we last spoke five years ago, I now see that chemobrain is listed under side effects on the MD Anderson Cancer Center website.
Chemobrain led to me making quite a few changes in the way I operate on a daily basis. I write almost everything down because of my anxiety about forgetting. I rely on apps and my phone for reminders and use a calculator much more frequently than I used to.
And when writing, I have the thesaurus open all the time because of the word recall difficulties. I am just thankful that I have these technological tools available to me. It is shocking to me though the amount of anxiety and coping mechanisms that these changes have brought about. I wish I had been given a better understanding of what to expect along with ideas for managing.
Menopause education is a must
Because of the type of chemotherapy I received and my age, I was thrown into menopause. I was told this would happen, but again, no one really told me what that would mean. Typically, going through menopause is a gradual process, but not so for chemo patients. As a result, the symptoms are more intense.
While not all breast cancer survivors can use hormone replacement therapy, there are ways to mitigate the symptoms, but no one talks about them. For those reading this letter who want to know more, check out this link that gives options. You may think that my primary care doctor is the person to treat these issues, but my experience has been that the primary care doctors avoid the topic and do not feel comfortable discussing any kind of hormone therapy with a cancer survivor. Please talk to your patients about what to expect and give them the information they need.
I spoke to several other cancer survivors, and they all report similar experiences. While your role is to treat cancer in your patients, that is just the beginning of the rest of their lives. I imagine your orientation is to focus on the positive, but it can be confounding for a patient to encounter difficulties later on and realize that they need more preparation, information, or referral to resources.
Because of the great success of cancer treatments now, many patients are surviving much longer, even decades. So now it is more important than ever to consider the side effects of treatment and give patients the lay of the land as they go forward into their new lives.
Originally published at https://chaiselounge.substack.com.
This post was previously published on medium.com.
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Photo credit: National Cancer Institute on Unsplash