Apr 9, 2018
TRANSCRIPT (links to follow)
This is Episode 025 of Glioblast‑O‑Cast. What do I do about radiation hair loss?
Hello, and welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I'm your host, Meg Turecek.
In this episode I answer the question, What do I do about radiation hair loss? And, as usual, some links can be found on my show page with this episode.
When I found myself facing another course of radiation to attack what we think is a recurrence, I knew I was facing additional hair loss.
I know for some, they find strength in facing the hair loss by shaving their heads. Others have continual head shaving due to the Optune device that is used for treatment. I’ll have a link about that on my show page.
I have seen others who may lose their hair due to chemotherapy, and hold parties with friends for moral support as they pre-emptively shave their hair off before it falls off. It’s one of the few things we can control in a situation where we don’t have much control. The cancer will do what it will do, and we have the option of seeking treatment or not. All personal choices. Like cutting off hair or fully shaving the head.
So when I approached the new series of radiation treatments--a total of 23 sessions Monday through Friday—I wanted to be more in control of an uncontrollable situation. I had radiation two years prior for the standard of care so I knew some of what to expect with radiation.
The first time, my radiologist cautioned me to not shave my head as it was possible that there might not be so much gone. I only lost hair in small triangles, one for the entry of the radiation and one for the exit. It was hardly noticeable.
But, the weeks of gradual hair loss, a pinch here and there, left the shower a challenge to keep from clogging. So this recurrence, I wanted to be pro-active. And I thought about chopping my hair.
Cutting off my hair to be more manageable was a concern. But, for me, it was also a concern that I wouldn’t look like myself without my hair. I don’t feel like a vain person, I just see it as a part of my identity, who I am. And I am a woman with long hair.
I was considering a wig to get me through this phase of treatment so I would look mostly like myself. I remembered my Mom during her treatment for ovarian cancer and the not-quite-right wig that she had. I didn’t want a fake wig that looked like a wig or a hairstyle that wasn’t me. And that’s when I found some ways to make a wig from my own hair.
I also had some advice from friends currently battling glioblastoma. One had gotten a full wig and told me she only wore it twice, because it just was too hot. So, that was a bit discouraging. And that’s when I found some companies and organizations that can make a halo wig from my own hair. A halo wig has the top—the halo—with a breathable fabric to keep the heat under control. I would wear a hat over it and have my own hair to fill out my look.
That seemed like the perfect solution to my style dilemma.
But before we chopped it all into tiny ponytails, my boyfriend suggested that we get a full picture from the planned radiation to know exactly where the hair loss could be expected.
At first, my doctors noted that the radiation would be in a bigger area to fight the inoperable blob. But once we looked at the planned array, we could see that it was only going to effect the left side of my head about an inch over and behind my ear.
The radiation was not aimed at my whole head, which meant that all the hair on the top of my head and the whole right side plus most of the back would likely be completely safe from falling off. So there was no need for me to cut off all of it off or get a wig.
So my advice is to ask for details with treatment plans. I can only be prepared with knowledge, even when learning the agenda is not exactly fun. I am able to tap into my positivity when I can move forward with as much pro-active plans as possible.
I’ll have pictures on my show page of the planned radiation array and with where we cut the tiny ponytails. I am keeping the parts we cut off in case I find myself in another radiation situation in the far future. And you’ll find some links for wig options as well as a unique wig exchange organization where you can find a wig to get you through and then donate a wig when you don’t need it anymore.
Thanks for listening. This has been Glioblast-O-Cast Episode 25.
Theme music for Episode 025: “Digital Lemonade” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License, http://creativecommons.org/licenses/by/3.0/
Chemo Diva: Get a Halo Wig Made Out of Your Own Hair! http://chemodiva.com/
Verma Foundation: Inspiring hope. Improving lives. https://vermafoundation.org/projects/put-a-cap-on-cancer/
Lolly’s Locks: a nonprofit organization that provides high-quality wigs to cancer patients in need https://lollyslocks.org/
EBeauty Community: Wig Exchange Program https://www.ebeauty.com/wig-exchange-program/
Friends are by Your Side: is a consortium of Beauty Industry Leaders, Salon Owners and Stylists committed to donating much needed hair replacement and styling services to women undergoing treatment for cancer. http://friendsarebyyourside.com/index.html
Cancer Council Queensland: ESA Wig and Turban Service https://cancerqld.org.au/get-support/cancer-support-services/wig-and-turban-service/
Optune device: https://www.optune.com/