Toni’s Cancer Journey

In 2016, I was successfully treated for stage 1 breast cancer and I’ve been cancer free ever since!

The best possible gift from that experience is to be able to share what I learned from it with others—to offer advice and encouragement to those on a similar journey, to spread the word about cold cap therapy for protecting hair during chemo, and to share some recommendations for anyone looking for safer hair & beauty products. I hope you might find something useful, hopeful, or inspiring here. 

*Everything below was written in 2016 just following Toni’s cancer treatment and is based on her own personal experience.

My Cancer Journey

In February of 2016 I was diagnosed with breast cancer. I get my mammograms every year like clockwork, with full confidence that I’ll always have the same good results I’ve had thus far—so it was shocking to me to find out there was even a chance anything was wrong.  After my initial mammogram, there were more mammograms, numerous ultrasounds, two needle biopsies, and an MRI.  All of which led to the dreaded diagnosis that the mass in my right breast was cancer.

The good news is that it was stage 1, slow growing, and completely curable. The prescribed course of treatment included chemotherapy, lumpectomy, and radiation. And though my cancer was at an early stage, I learned that having chemo isn’t always based on the size or type of cancer you have but also on the hormonal makeup of it. 

Before treatment could begin, I had surgery to install the chemo port and have my lymph nodes tested. I didn’t like the port, but I got used to it. And some nerves were severed during the lymph node removal process, giving me a lot of nerve pain in my arm and breast for a few weeks. That said, the lymph node testing came back fine—the cancer had not spread there, and that was great news! 

Further, during this period I had genetic testing to determine if my cancer was inherited. My mother is also a breast-cancer survivor, and my father is a skin-cancer survivor (skin cancer can be linked to breast cancer) so it was a concern for my doctors. I’m very happy to report these tests came back negative—not genetic. This is great not only because it puts my relatives in the clear, but because genetic breast cancer is treated even more aggressively than the non-genetic kind. 

My treatment began with chemo. Chemotherapy is easier for many people these days than it used to be, so I went into it bravely and with high hopes, but my experience was not a good one. Besides sickness, the worst part was immediate extreme fatigue both of body and mind, as well as having low white blood cell counts that made me more susceptible to infection. As a result, we took a hard look at the harm versus the benefits, and since the chemo was a wholly preventative measure in my case, it was decided, with great peace of mind, that I would not continue. 

After that came the lumpectomy, an easy surgery for me personally.

Radiation was the last major step in my treatment and included twenty-one treatments over about five weeks. The radiation is also strictly preventative, to treat any stray cells that might have ventured beyond the tumor. Radiation was one of the easiest parts for me—I was careful to follow doctors’ orders about moisturizing and exercising to ward off side effects, and this kept them to a minimum for me.  Overall, I found radiation very manageable.

Although I will be closely monitored by a lot of doctors for the coming years, I’m very happy to say I now consider myself cancer-free!  I’m very grateful that this was caught in a very early stage, before it became life-threatening, and the steps I’ve taken make it highly unlikely it will ever return. All of which means:  I’m fine. 🙂

UPDATE:

My hair has grown back, and while the treatment process seemed overwhelming, I can say, cancer seems like a long time ago to me now. As of the release of THE SUMMER OF LOST AND FOUND I’ll be ten years removed from my diagnosis and all is well.

My Advice for An Early Stage Breast Cancer Diagnosis

Click on the below topics for a short explanation of why I recommend each of them.

Product Recommendations

Getting cancer made me begin looking for natural, organic beauty products that contain fewer chemicals. During this process, I learned (via the company BeautyCounter) that in Europe, over 1300 chemicals or substances are banned for use in beauty products, but in the United States, the number is, um, 11.  Yeah, 11. And the last one banned was in 1938. It horrifies me that it appears the FDA is doing little to police this, since most of us have no way of knowing what we’re putting on our bodies in our shampoos or deodorants, etc., or how these ingredients might be affecting us.  

I’ve also learned that many products will call themselves natural or organic without actually being so. That’s disturbing, too, but I guess it’s part of what happens when no one is strongly regulating this industry. So be warned:  just because a company uses those words, you still need to research the ingredients to see if it bears out. 

My personal attitude is:  If I can find a more natural product I really like or love that replaces one filled with chemicals, I use it. If I can’t, I stick with the ones I’m already using, knowing that at least I’m getting SOME of the chemicals out of my system. Because I had to look long and hard for most of these online or through other time-consuming personal research, I want to share with you the ones I’ve used and liked. 

2023 Update: It’s been seven years since I compiled this list, and I’ve decided to pare it down to the products I’m still using today. It doesn’t mean anything was wrong with the ones I’m removing, but the ones I’m still recommending have stood the test of time for me.


Click on the below photos for a short explanation of why I recommend each of them.

My Thoughts on Cold Caps

Depending upon where you live, you may or may not know what cold caps are. I had never heard of them despite living in a fairly large city. So to cut to the chase, cold caps are a way to save your hair during chemo. That’s right, there’s been technology for over 20 years that can allow many people to keep their hair during chemotherapy! 

Cold caps are fabric caps containing a gel solution that are worn during chemo treatments. The caps are chilled to around -25° to -30° Fahrenheit (you read those minus signs right, by the way). They work by freezing the hair follicles during chemo and this keeps the chemo drugs from making the hair fall out.

In the UK, this process is more widely used. In the US, not so much. Why? Very few clinical trials and no FDA approval. Chances are your doctors won’t tell you they exist, but when you mention them, they’ll know what they are. Mind you, I gather this varies wildly from area to area—some cities have oncology offices that are actually facilitating the use of cold caps now—but by and large, this is pretty spotty, and for the most part, in the United States, you’ll be on your own when it comes to finding out about them, learning about them, and using them.

The downside: They’re pricy, the process can be complex and grueling, using them successfully requires following a lot of rules, and they may not work for everyone.

The upside: If you commit to using them, and you follow the rules, there’s a pretty good chance you’ll keep at least some of your hair during chemo. They work really great for many people, and I have a friend who kept almost all of her hair through thirty chemo treatments!

My experience with cold caps: There’s no getting around it—I lost a lot of my hair. But a lot is not all, and you’d be surprised at how little hair you can get by with and still look fairly normal. ;). For me, that’s what it was about—a desire to just keep feeling as normal as possible, to not add the indignity of hair loss to what is already a tough time if I could possibly help it.

And the further fact is, colds caps may not work as well on people with thick hair—and I had extremely thick hair. But I tried it anyway, doing my best and following all the rules, and I don’t regret using them at all, because despite losing about 80% of my hair, I’m able to get by with headbands and ball caps right now rather than wigs.

My personal advice: If you really love your hair, if it’s really important to you, investigate using cold caps.  They require a financial investment, a lot of organization, and some helpers to facilitate the process—and they’re cold on your head.  Really cold.  But it’s an option, and that’s very important to me: to let you know there is an option for trying to keep your hair during chemotherapy

A personal side note: It’s okay to love and value your hair. During this period, people will say kind things to you, like that you’re more than just your hair, it will grow back, hair isn’t important. And I am truly grateful for those kindnesses. But oftentimes the message you might feel you’re getting is: It’s frivolous or trivial to worry about your hair at a time like this. And I’m just here to say that if, like me, you care a lot about your hair, it’s not frivolous, it’s not trivial, it’s okay to love your hair and want to keep it. It’s all about just feeling normal, feeling like you, and holding on to as many parts of your normal identity as you can as you take this journey.

I will admit that while I’m coping fine, the hair loss has been one of the hardest parts of this for me because I seriously loved my hair. And I look forward to loving it again. And while I’m mourning the loss of that 80%, I’m ever so thankful for every remaining hair I have—and that’s due to the cold caps.

If even one woman saves her hair because she learned about cold caps through this page, I will be very happy. :)

Some helpful links about cold caps: Penguin Cold Caps and The Rapunzel Project.