It always feels strange to put personal news on a public platform. I share this in hopes that my journey will provide some insight for anyone in a similar situation.
Disclaimer This is my story, not yours. I tell my account here to encourage each woman to research her own specific diagnosis and glean details at full tilt. Get as much information as you can, get second/third opinions, join support groups, then make an educated decision for yourself, and move forward in confidence.
This summer I was delivered some shocking news. Doctors told me I have “breast cancer.”
After a whirlwind of second and third opinions, plus other doctor visits (each entailing four hours of travel each way, back and forth to Seattle), a needle biopsy, which failed, and then a surgical biopsy (!), I finally had my official diagnosis.
Doctor: “You have breast cancer. It’s called Ductal Carcinoma In Situ, Stage 0. It’s not life threatening, really nothing to worry about. And you don’t need to rush into treatment. We recommend you have a second surgery to ensure clear margins, plus six weeks of radiation treatment five days a week, and five years of hormone blocking drugs.”
Me: “Excuse me, WHAT?!”
I suddenly remembered a woman in the mammogram waiting room back in NYC just a few months earlier. She was making quite a stink about the quality of care she had received recently, and other women joined in with their complaints. I had never heard anything like this before in a doctors’ office. I remember thinking, “Is this an example of the health care system in New York?” Before she was called in for X-rays, the woman stood up and emphatically pointed her finger in the air. In a strong, firm voice she said, “Question! Your! Doctors!”
This made quite an impression on me at the time, and now I know why.
Cut to me, approximately two months later in Seattle.
What is Stage 0? Is it something or nothing?
I began my research on Ductal Carcinoma In Situ, Stage 0. I took a deep dive into finding out everything I could possibly learn, both good and bad. Risks, chances of recovery, clinical trials, every YouTube video possible, every medical symposium with experts on DCIS, every article on the internet, five informative books, plus more. The doctors and medical world don’t like the internet because patients tend to self-diagnose. But all I can say is thank goodness for online resources!
Almost every piece of information I found on DCIS Stage 0 says that it is a highly controversial subject. The medical industry doesn’t have enough data and research on this new type of “pre-cancer” yet. It’s only been discovered in the last twenty years. Because of advanced technology (yay!), today’s mammograms are now able to spot these abnormal cells that are just sitting there “doing nothing”(boo!). Many doctors question whether “Stage 0” is actually cancer at all, and there are a lot of discussions about removing the word “carcinoma” from the title entirely. After all, a woman hears the word “cancer” from a doctor, and her whole life turns upside down in an instant. The experts scared the daylights out of me, all the while saying that DCIS is 100% treatable with the standard prescription of surgery, radiation, and drugs.
Doctors don’t know the likelihood of these abnormal cells disappearing on their own, (= nothing), or breaking through the ductal walls and becoming invasive (= something!). They can only say with certainty, that the cells “may” or “may not” turn into something bad.
Okay…let’s go with may not!
The explanation for the prescribed aggressive treatment is, “It’s a preventive measure. By getting another surgery, radiation treatment and drug therapy, you will reduce the chances of DCIS Stage 0 returning by half.”
But what if you opted for an “active surveillance” (i.e. watch and wait) method and your return rate statistics show that your chances are at 12%, like mine? Do I really want to go ahead with an aggressive treatment program to reduce my chances of return by 6%?
So what is the reasoning behind treatment?
• Is it because the survival rate (for a ten year period) with the aggressive treatment is almost 100%? (But treatment causes many bad side effects and could have a negative effect on one’s overall psyche and wellbeing.)
• Is the success rate for Stage 0 folded into the overall success rate for breast cancer survivors? (In order to make breast cancer survival rate numbers rise?)
• Are doctors legally bound to advise the aggressive treatment route? (I haven’t found anyone willing to help me with an “active surveillance” approach, at least not so far…but I will find you!)
• Does a fear of lawsuits and malpractice issues make doctors unwilling to take on the perceived risk of supervising a gentler approach for the patient? Is this Health Care or Health Careless?
• Is it because the executive boards of hospitals, research labs, and medical business administrators answer to the billion-dollar drug and pharmaceutical industries?
Disclaimer This is not any kind of slight against individual doctors. I believe that most DRs are great people, and have committed themselves to helping people be well, and save lives. It's really an honorable job. But they're not Gods. They are human beings, messy and fallible like the rest of us. My point is we may be at the mercy of "an industry problem".
I am still surprised to think that I may (or may not) have a type of breast cancer, especially when there is not a single person in my family who has ever had it. I read one article entitled “Do you have the breast cancer personality?” which asks:
Are you/Do you :
- Highly conscientious, caring, dutiful, responsible & hard working? yes
- Worry for others and carry other's burdens? yes
- A People Pleaser with a great need for approval? when I was young, yes
- Have a poor relationship with one or both parents and/or a spouse? yes
- Internalize Toxic emotions like anger and resentment? Um, yes
- Unable to cope adequetely with stress? I thought I was doing okay but..."
- Have unresolved, deep-seated emotional problems and conflicts from childhood and often unaware of their presence? I wasn't aware of...oh no...yes?
Still, the quiz sounds like BS to me.
Spoiler alert. I’ve decided to take an “active surveillance” approach to wait and see if anything else happens around the 1.2 cm that the surgeon already removed, and to keep a close eye on everything else in the vicinity. One thing I know for sure going forward: if I learn of new, BAD developments happening with my cells, I will begin the standard, more aggressive treatment immediately.
Otherwise, for now, I choose to see things like this: “Wow, I am so lucky to have the resources to learn all this new information! Wow, I am so lucky that I can have a super-healthy lifestyle with a new and improved diet, emotional state, and boosted immune system! Wow, I am so lucky I have a choice of active surveillance instead of more hospitals, treatments and drugs. I am so lucky it’s only Stage 0.”
Don’t get me wrong— I’m still scared sh##less. But I will move forward in confidence and trust my gut on this. As I live my life in good health, I consciously choose to stay positive, find a good team of doctors willing to guide me along this journey, stay vigilant in finding alternative therapies that work, and above all, be grateful that I’m still here.
If you are in a similar position, and would like to know more, please DM and I’d be happy to provide great resources and support.
More stuff to know:
The American Association of Pharmaceutical Scientists states that: “Cancer is a preventable disease that requires major lifestyle changes. Only 5-10% of all cancer cases can be attributed to genetic defects, whereas the remaining 90–95% have their roots in the environment and lifestyle.”
Breast Cancer Triggers
- Standard American Diet = SAD
- Processed, packaged, and chemically preserved foods
- Excessive sugar consumption
- Bad fats and oils
- Hormones and antibiotics in food
- Processed Foods
- Environmental Toxicity
- Home cleaning products
- Air fresheners
- scented candles
- Pots and pans (some)
- Beauty products - lotions, perfumes
- Electro-pollution - cell phones, computers, celltowers, wifi, baby monitors
- The World Helath Organization dubbed electro magnetic fields as a type 2 carcinogen
- Physical and Hormonal Stress
- Emotional Wounds
- Dental Toxicities
- Metal fillings
- Root Canals
- Metal Implants
- Imflammation & methylation
- Smoking and Alcohol
- Sleep Deficit
- Environmental toxins in and out of the home
- Saturated fats, trans fats, and too many omega 6's
- elevated blood sugar
- Chronic Stress
- Unnecessary Surgery
- Dental X-Rays
- Radiation Therapy
- CT Scans
- Drugs and Chemicals