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A Cancer Diagnosis by Any Other Name

A reader recently wrote an email seeking my opinion on a controversy, opining "I am sure that you have thought about this . . . a lot." I've struggled with how to respond because, ironically, this controversy brings up issues I've actually tried very hard to avoid.

The controversy is laid out in a New York Times article. Are premalignant conditions such as DCIS actually cancer and should these conditions "be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast."

It's the word "unneeded" that's caused me to avoid diving into this issue until now. Did I submit to "needless," "disfiguring and harmful treatments" for "premalignant and cancerous lesions that are so slow growing they are unlikely to ever cause harm?"

Did the mere hint of cancer compel my doctor to "biopsy, treat and remove it" at "great physical and psychological pain and risk" to me? Was I in fact a victim of "overdiagnosis" and "overtreatment?"

Now that I've allowed myself to think about it, here's where I come down: When it comes to whether DCIS is medically cancer or not, I am not qualified to have an opinion nor do I care what you call it. As a patient, all I care about is getting individualized medical care which, given the witch's brew of DCIS, LCIS, atypical hyperplasia and micro-calcifications I had in my breast, I believe I got.

Just as importantly, I also want individualized emotional care, which I did not get. Every technician, nurse, physician's assistant and doctor I spoke to before my mastectomy told me I was "lucky" to have found my DCIS early. No one ever mentioned the emotional downside of my diagnosis. With only the word "lucky" ringing in my ears, I concluded I was not going to die, which was excellent news. But, I also concluded I had no right to any feelings of loss, anger, fear or loneliness. I didn't know how I fit into the cancer community, if at all, and didn't seek out support because I believed I had to accept my "luck" and just get on with it.

Much later, after I had my mastectomy and found support at my cancer center, I was overwhelmed by an especially egregious case of DCIS pooh-poohing. As I wrote about in an earlier blog post, the technician who performed my first mammogram post-surgery argued with me that DCIS was not breast cancer. To further drive home her point, she told me she knew a woman with DCIS who also had a mastectomy, "so she wouldn't have to worry about it anymore." What I heard her saying right to my face was, "You didn't have cancer so get over it."  

If we decide DCIS and other premalignant conditions are not in fact cancer, will we avoid unnecessary treatment? Or will we just manage to further alienate people who struggle with cancer emotions but have the added burden of not feeling worthy of those emotions? In fact, if we decide today that DCIS is not cancer, do I have the right to continue calling myself a breast cancer survivor? If I do not, what then do I call myself? 

This is a complicated issue and I don't have any answers. All I know is that I absolutely was "lucky" to avoid chemotherapy and the fear of dying from my diagnosis. Yet, I still wrestle with cancer emotions and sorely needed the emotional support services I eventually found at my cancer center.

Maybe I do care what you call it. All I really want is to make sure all patients get individualized medical and emotional care and support. If we need to use the word "carcinoma" to get them (and me) that level of care and support, then maybe we need to keep using it. 

Survival > Existence

Related Posts:

Cancer Survivor's Guilt & Its Ugly Cousin

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Let's Talk About Living Well After Cancer

I recently appeared as a guest on the Survive and Live Well Radio Show to talk about how "Empowerment is the Best Path to Survival." Angela Long of Breast Investigators also appeared on the show, which is hosted by Elyn Jacobs.  

We talked about many issues, including how gratitude affected my healing after cancer, the importance of seeking out support and sharing your story, and experiencing cancer anger (or, why it's sometimes necessary to throw something.) 

If you missed our live discussion, you can listen to it at your convenience by downloading it here.

The business of thriving after cancer is not an easy one. I've learned that the more I talk about my life after treatment, the more I feel validated and healed. I hope listening to our conversation does the same for you.

If you're interested in listening to my other live appearances, head over to my Video, Radio, Articles page to check them out.

After you listen in to our discussion, I'd love to know which issues resonated with you. Let me know in the comments below!

Survival > Existence,

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Book Review - "Kicking Cancer in the Kitchen"

"The way you think, the way you behave, the way you eat, can influence your life by 30 to 50 years." Deepak Chopra 

Cancer has a way of changing your perspective. Many of us are more aware of the need to make better choices about the food we eat. Two young cancer survivors, Annette Ramke and Kendall Scott, took it a step further to become certified holistic health coaches using nutrition to fight cancer and regain control over their lives.

Their book, Kicking Cancer in the Kitchen: The Girlfriend's Cookbook and Guide to Using Real Food to Fight Cancer, offers real-world advice to women facing a cancer diagnosis, treatment and survivorship, and anyone looking to reduce their risk of cancer.

I love that the book is written in two parts. Part One, "The Girlfriend's Guide," makes this book so much more than a cookbook. Imagine having a friend who has been where you are and is willing to take you through the process. Annette and Kendall share their personal stories and talk honestly about alternative medicine, creating a cancer team, losing your hair, the loneliness of cancer, scars, friends, and the healing power of real foods.

Part Two, "The Recipes," features over 100 recipes from smoothies to leafy greens. The recipes are simple, clear and make your mouth water. Under each recipe name, Kendall and Annette share specific benefits of the recipe, such as Blood Boosting, Brain Boosting, Fatigue Fighting and Adrenal Support, Detoxifying, Mood Balancing and the like. 

This is a book I wish I had read when I was facing diagnosis and treatment. It's a sensitive, honest, real guide to getting through cancer and a lifelong kitchen companion for anyone looking to reduce their risk of cancer in the future.

Below are two recipes I tried and enjoyed:

Fennel String Bean Salad

1 pound string beans, ends trimmed
1 fennel bulb, trimmed
1/2 cup radishes, trimmed and sliced
2 tablespoons extra virgin olive oil
2 tablespoons lemon juice
1 garlic clove, minced
1 teaspoon salt
Dash of freshly ground black pepper
Cut the string beans into two-inch pieces and place in a steamer basket or metal colander in a pot with about one inch of water. Bring the water to a boil and steam for five minutes, until just cooked through. Cut the fennel bulb in half and thinly slice into bite-size pieces. In a a small bowl, whisk together the oil, lemon juice, garlic, salt and pepper to create a dressing. Place the string beans, fennel and radishes in a large bowl and toss with the dressing.

Gingerly Carrot Soup

2 tablespoons olive oil
1 large sweet onion, chopped
1 leek, well rinsed and sliced in rings
Sea salt
2-inch piece fresh ginger, finely grated
1/2 teaspoon ground cinnamon
1 pound carrots, scrubbed with ends removed, and chopped
Juice of one orange
2 to 3 cups vegetable stock
1 tablespoon miso
Freshly ground black pepper
In a stockpot, heat the oil over medium heat. Add the onion, leek and a pinch of sea salt and saute until the onion is soft, about five minutes. Add the ginger and cinnamon and saute another 5 minutes, stirring constantly.
Add the carrots, orange juice and enough stock to cover the carrots. Bring to a boil; reduce heat then simmer, covered, until carrots are tender enough to pierce with a fork, about twenty minutes.
Turn off the heat, and puree with an immersion blender. Remove a small amount of the soup (about 1/2 cup) and mix it with the miso in a small bowl. Add miso mixture to the soup and warm on low heat for several minutes. Check a spoonful for seasoning adding pepper as needed.
I love making soup in the fall and will make the Gingerly Carrot Soup again very soon. Give the recipes a try and get the book if you want to know more about Kicking Cancer in the Kitchen. Let me know in the comments below how you've changed your eating habits since your cancer diagnosis.
Survival > Existence,

Disclosure of Material Connection: I received the book mentioned above for free in the hope that I would mention it on my blog. Also some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will be good for my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

"You Can Thrive After Treatment" is Out! Get it Free Today Through Sunday

My book, You Can Thrive After Treatment, is officially PUBLISHED!!
I wrote You Can Thrive After Treatment to share my 10 simple secrets to creating inspired healing, wellness and your joyous life after cancer.
Last Thursday night I pressed the "publish" button and, by Friday afternoon, it was #11 on the "Amazon Best Sellers in Cancer list!" It was also listed as an "Amazon Hot New Release in Cancer!"
I'm over-the-moon excited and can't wait to share my book with you. It's priced at $2.99 but, as a special "Thank You" to you, I'm offering it FREE for five days starting TODAY.
If you don't have a Kindle, no worries. Go here to set up a free reader on your computer. After you get the book, please spread the word - I want to make sure everyone who needs to know You Can Thrive After Treatment is in the loop.
Also, as a special favor to me, please consider writing a review at Amazon. All you have to do is go to the Amazon page for You Can Thrive After Treatment and click the "Write a customer review" button. Every review helps get the word out, so I would be very grateful to you for taking the time to write one for me.
Thank you again for your support, encouragement and good wishes. I'm so privileged to share this journey with you and wish you all the best as you create inspired healing, wellness and your joyous life after cancer!  
Survival > Existence,
PS: I've included a special thank you gift with You Can Thrive After Treatment. I'm not going to tell you here what it is - it's my little surprise.

How to Express Your Cancer Anger, Even if Something Gets Broken

Question: How many cancer patients does it take to change a light bulb?

Answer:  A few months after my April 15, 2009, mastectomy and TRAM flap reconstruction, I changed a light bulb. The light fixture had a cover which I removed to get to the bulb. Everything went well until I tried to reattach the cover.

As I struggled, I got more and more frustrated.I didn’t want to give up and give the job to someone else; I wanted to make it work. And then, suddenly, all I wanted to do was smash the darn thing onto the ground.

Which I did.

The cover exploded on impact and plastic shards sprayed everywhere. I stood frozen in horror and yet felt strangely satisfied. In that split second, I let go of all restraint and expressed exactly what I felt – and I felt anger.  

“Try as much as possible to be wholly alive, with all your might, and when you laugh, laugh like hell and when you get angry, get good and angry. Try to be alive. You will be dead soon enough.” William Saroyan

I was good and angry all right – and it wasn’t at that light fixture. I had just gone from healthy to disability and disfigurement.  All I saw when I looked in the mirror was an angry, red cancer scar from hip to hip, a reconstructed mound where my right breast had once been and a missing nipple.

And that was just the physical stuff. Receiving a cancer diagnosis was mind-blowingly frightening. Submitting to painful tests and surgeries overwhelmed my flight or fight impulse. My body image was in the toilet. Emotionally and physically, I was a train wreck.

I was angry about it all; I just didn’t know it until I smashed that light cover to smithereens. After that, two things happened. The first was that I kept running into things that made me angry. Family and friends wanted to get back to “normal” before I was ready. I struggled with loneliness. The technologist who conducted the first mammogram after my surgeries was an insensitive idiot.

The second was that I got help dealing with my cancer anger. Luckily for me, my cancer center offered oncology therapy. My therapist helped me recognize the depth of my anger and reassured me that being angry was entirely normal for cancer patients. She also encouraged me to talk it out - first with her and then with others.

“Anybody can become angry – that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way – that is not within everybody’s power and is not easy.” Aristotle

It wasn’t easy facing my cancer emotions once a week for a year, but the process healed me. I hadn’t even realized how much until a few weeks ago, when I met a young ministerial student as part of The Connection’s Pathways Women’s Cancer Teaching Project.

As a patient educator, I shared that I still have pain most every day from my TRAM flap reconstruction. She seemed genuinely horrified that I was still suffering three years after my surgery and asked me if I was angry about it.

“Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.” Mark Twain

My answer caught me off guard, because I had to say that I wasn’t, and that surprised me. Somehow that year of therapy and all those tears immunized me. I’m not a vessel of unresolved anger. I’m sharing my cancer emotions and living my life after cancer with acceptance. 

(I originally posted this piece as a guest blog post on No Boobs About It. To this day, that light fixture is still without its cover. Whenever I look up and see it missing, I'm reminded of my cancer emotions that day and happy to be living life after treatment.)

Survival > Existence,

Related Posts:

Coping with Cancer Anger

5 Tips for Coping with Cancer Anger at Home

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