A Letter to My 2009 Self, Newly Diagnosed With Breast Cancer

Brenda Denzler is a writer and editor living in North Carolina. She was diagnosed with inflammatory breast cancer in 2009. Catch up on Brenda’s blogs here.

Dear Brenda,

You’ve just been diagnosed with inflammatory breast cancer, and I know you’re scared to death. You have every right to be. Not only are you facing a very aggressive, low-survival form of breast cancer, but you’re being forced to deal with a medical profession that traumatized you repeatedly with their treatments and neglect when you were deathly ill as a very young child.

That experience left deep scars upon your psyche that you are only beginning to see. I wish I could tell you that you emerge from what’s ahead of you with the cancer defeated, the long-term treatment side effects limited to the loss of a breast, and the demon of your PTSD vanquished; however…

The path you now have to walk is not going to be easy. The treatments for cancer can be brutal — and yours will be. Not only medically, but in just about every other way that matters.

You will have to fight for every bit of detailed medical information you need to hear, because your medical team will not provide it forthrightly. They will hedge and feint. They want to tell you positive things and not, “bring the negative into the room.” Bring it in anyway. Do your homework. Then formulate your questions and politely insist on answers.

They will be unable to hear you when you explain, trembling and with tear-filled eyes, that you are 100% afraid of the cancer and 99% afraid of them and what they want to do to you. They’ll ignore your comment because they don’t see themselves as scary and refuse to engage with your self-insight. Or they’ll refer you to the oncology psychiatrist because they think your problem may be valid, but it’s yours alone and not one that is an important part of the shared relationship between you. Better give up on their “getting it.” They never will, which will cause all kinds of additional trauma for you.

You will have to stomp your feet and cause a scene to get several of your most simple requests met — like using the port that you just had put in instead of starting a peripheral line, all because the nurse isn’t experienced enough to be able to access the port properly and swears that it’s malfunctioning. It isn’t. Stand your ground. This increases your mistrust of them.

You’ll have to politely but very firmly insist on having input into key decisions — input that goes beyond merely “yes” or “no.” Don’t be faint-hearted. You’re not wrong to have your own ideas and want a say in what happens.

You’ll be told one thing will happen, and then something totally different will be done — often not for any medical reason, but just because “that’s how we do these things” or because “I forgot,” as if you hadn’t talked about it at length and written your agreements into your consent forms. Brace yourself. This betrayal will traumatize you in a big way all over again. You’re trying to build your trust in them, and their actions will repeatedly make it difficult to do so.

By treatment end in 2010, you will dislike them all… and dislike yourself even more because of your treatment-related PTSD. You’ll begin to think that it would be better if you were just dead. It wouldn’t be. But it will take you some time to be glad to be alive again. Hang in there.

Fifteen years later, you will be, remarkably, NED (no evidence of disease). That’s the good news.

But you will have heart damage (which was undiscovered and medically unowned for the first 12 years), secondary lung damage (ditto), and escalating peripheral neuropathy because of the cancer treatments, even though you were told those serious kinds of things “very rarely” happen.

You will still be afraid of doctors and their treatments, but you’ll have more control over your fear and will have learned how to negotiate medical relationships more effectively. You’ll still be angry about everything that happened. But you’ll be alive and more or less functional. And that matters, because…

You will have three grandsons, by then, and you will be a rock and resource for them when their lives get turned upside down. You’ll have written another book and a few articles about treatment-related medical trauma to help educate clinicians and reach out to fellow sufferers. You’ll have helped your parents face their own final illnesses. And you’ll get meaningfully wrapped up again in the things that captivated you when you were in grad school.

In short, you’ll struggle with how to be very grateful for life, but also very angry about what it took to be alive. Maybe in the next 15 years, we’ll figure it out?

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