A Cancer Diagnosis by Any Other Name

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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

Debbie
Image courtesy of Jack Dorsey

Comments

Claudia Schmidt's picture

DCIS post

Debbie,

I can only imagine how disturbing that must have been. It’s so frightening to hear the words cancer, when associated with yourself, and then to have your medical support teams question you, based on a label, must have been maddening. The more I learn about bc, the more I realize that no one really knows all that much about it. The medical community seems to shift their thinking every few years and for patients, the major focus is almost always going to be on how to get the cancer out of there body so that they have a future, and don’t have to be constantly worried that it will return. Love your posting, thanks. Best, Claudia www.claudiaspost.blogspot.com

Debbie's picture

We All Deserve Healing Support

Claudia:

I felt such anger at that moment. To go through so much and have someone dismiss it out of hand was extremely painful. We are all entitled to healing support. To walk into a medical facility and get anything less is an outrage – regardless of the stage presented by the patient. Thanks so much and all the best to you too.

Survival > Existence,

Debbie

Helen's picture

Dear Debbie

Dear Debbie

Your pain and anger came across so vividly in this post – it’s taken me some days of consideration to reply to it. I most certainly have no answers. Acknowledgement is such an important thing in both ourselves and from others, to have your situation almost dismissed must have been like a hammer blow. Almost unbelievable in its insensitivity, when you were so vulnerable. I too had DCIS along with a tumour. This resulted in me having radiotherapy to my whole breast rather than a more targeted area. The unexpected result is that I am left with chronic (but manageable) pain because about a quarter of my breast already had internal scar tissue from a benign lumpectomy in my early 20’s. If the medics or I had known I would be left with long term pain would my treatment options have been different, or my own decisions? I just don’t know. I have no regrets, and am sure that I made the best decision I could on the best advice at the time. What more can we do. It’s always a balancing act, but in such situations I try hard to look at the bigger picture. And on difficult days (and I’ve had a few recently) it’s enough for me to celebrate that I am Still Here.

Debbie's picture

Proud to Be Here With You on Good Days and Bad

Dear Helen:

Thank you so much for your empathy and understanding. It’s not easy to deal with any cancer; we all suffer, struggle and strive to heal. I’m glad you are comfortable with your decisions and have the ability to see the bigger picture when things get rough. I’m proud to be here with you on good days and bad!

Survival > Existence,

Debbie

Janet's picture

DCIS

Dear Debbie,

I was diagnosed with DCIS in June. I opted for BMX with DIEP flat recon. I was told that it was over kill. Had my surgery 9/5, was told my nodes were clear after surgery. Went for a follow up with the breast surgeon. Not only did I had two IDC tumors .4cm and .2cm. I have micro invasion of a lymph node. the other breast had ALH so it’s good I did what I did.

Debbie's picture

I’m Glad You Have No DCIS Regrets

Hi Janet:

It must have been very difficult to hear that what you did was “overkill.” I’m glad your decisions were validated. It’s hard enough to go through this without second-guessing yourself and your doctors. We all do the best we can with the information we have at the time. It never helps to regret.

Thanks for your comment.

Survival > Existence,

Debbie

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