Goodbye Hair

For the most part of my life, my hair has been long. Long, layered and with a face frame, plus or minus a side bang. I am a creature of habit. Every other year or so, I have an “I need a change” moment and my hair is the martyr. I say goodbye to 12-14 inches, immediately regret it and then begin my “regrowing” phase. With the exception of these moments, I only get my haircut every 6 months or so, and I ask my hairdresser to trim as little as possible, “because I’m growing my hair out.” 

Needless to say, my hair has been a large part of my identity. So when my oncologist told me to expect hair loss with my chemo regimen (aka chemotherapy induced alopecia), I had to get ready. I prepare myself by educating myself. After all, as a physician, I am a declared life-long learner and it is the only way I know how to process my current situation.

Chemotherapy induced alopecia can be partial or complete and is most prominent on the scalp, especially at the crown and the front areas of the scalp (1,2). Don’t forget that alopecia is not specific to the scalp and includes loss of eyelashes, eyebrows, axillary hair and pubic hair. The hair loss is transient and typically reversible. Yet, not surprisingly, it can cause significant distress to patients, specifically, negatively impacting their body image, psychological well-being and quality of life (3-5). It can have such a profound impact that patients may refuse or delay treatments that can otherwise be beneficial (5). Alopecia can be that devastating! 

To understand why chemotherapy causes hair loss, you need to understand what chemotherapy does. Chemotherapy attacks rapidly dividing cells in the body, such as cancer cells. Cancer is caused by cells that inappropriately and uncontrollably divide, increasing in number and destroying surrounding tissue. In the normal body, some cells naturally divide more than others and hair follicles are one of them. Thus, they are more sensitive to the effects of chemotherapy than cells that divide much slower, such as brain cells, or cells that don’t divide at all, such as adipocytes (fat cells).

*Medical Tidbit*

Hair follicles undergo lifelong cycling through the following phases:

Anagen (growth) – 90% of hair follicles are in this stage at any given time (6). Scalp hair grows approximately 0.3mm per day and spends 2 to 6 years in this phase (6,7).

Catagen (transformation) – Hair follicle regresses and growth stops. Less than 1% of hair follicles are in this stage at any given time and scalp hair spends about 3 weeks in this phase (6,7)

Telogen (rest) – 10% of hair follicles are in this stage at any given time and scalp hair can spend 2 to 3 months in this phase (6,7). 

Exogen (shedding) – The scalp contains approximately 100,000 hairs of which 50 to 150 hairs are shed per day (8).

Hairs cycle through these phases asynchronously, meaning we always have hair in different phases of this cycle. So, unlike a snake that sheds all of its skin at one time we are constantly shedding and growing hair. Of course, many of us, especially, with long hair don’t need medicine to teach us this. I know my bathroom floor can attest to this. 

So, what can be done about chemotherapy induced hair loss? One option to try to prevent or reduce hair loss is cold caps. Cold caps use the mechanism of scalp hypothermia or scalp cooling to vasoconstrict the blood vessels of the scalp to reduce the exposure to chemotherapeutic agents. The FDA currently has approved two automated scalp cooling devices, DigniCap and Paxman. Cooling is started about 30 minutes prior to chemotherapy, lasts during the chemotherapy infusion and for 90 minutes to up to 4 hours after the infusion (9,10). Although data on this is limited, it is thought the optimal scalp temperature to cool to is 22℃ (71 ℉) and the automated cooling cap is set to 0℃ (32 ℉) to achieve this.

Two studies which evaluated the efficacy of automated cold caps in patients with breast cancer receiving chemotherapy found that 50-66% of patients who used cold caps had significant reduction of alopecia when compared to similar patients who did not use automated cold caps (11,12). This translates to a success rate of 50-66%. Now, a few things that are important to consider when interpreting these results. 

First, the term significant does not refer to the amount of hair loss, but rather is a statistical term that says the results in patients who used cold caps versus those who did not were enough to see a statistical difference. Often this means that in the real world there is a noticeable difference, but not always. And of course, nothing is guaranteed.

Second, these studies defined success as less than 50% hair loss. So cold caps will not prevent hair loss but rather, theoretically, a patient would lose less hair than if they didn’t use it. Using cold caps, a little more than half of patients will lose less than half of their hair. As with all medical therapies, the decision to or not to pursue a therapy involves a consideration of risks versus benefits. Part of a doctor’s role is to lay out the risks and benefits of the therapy they are recommending to a patient so that they can make an informed decision. So for some it may be worth the time commitment and physical discomfort of cold caps to use them and for others it may not. It is a personal decision. 

Of course, in the US, financial considerations influence our medical decisions. Scalp cooling costs on average between $1500 and $3000 but can vary depending on the number of chemotherapy cycles (13). At this time very few insurances offer only partial coverage for cold caps. Hairtostay.org is a national nonprofit organization that is dedicated to making cold caps affordable to cancer patients and provides additional resources about scalp cooling.

Lastly, one of the studies specifically shows that they are much less efficacious (16% success) in patients receiving anthracycline chemotherapy agents (12). Anthracycline is just a category of chemotherapy of medication and includes a medication called adriamycin, which is included in my chemotherapy regimen. So, per discussion with my oncologist, who showed full support either way, and based on the considerations mentioned above, I chose not to pursue cold caps. To note, there are several medications that have been proposed to reduce chemotherapy induced alopecia, but have been approved by regulatory agencies for use (14).

The next step in preparation for me was to cut my hair really short. Patient’s do this prior to hair loss for a few reasons. Less hair = less mess when it falls out. Seeing yourself with short hair prior to hair loss provides a mental transition to baldness. Some patients also experience a tingling or discomfort sensation at the hair base prior to and during hair loss which is worse with the pressure and tugging of longer length of hair.

If I had things entirely my way, I would have invited my family members over to watch, celebrate the moment, and treat it like my second Mundan. The Mundan ceremony is an Indian tradition performed at a child’s first haircut. Family and friends are invited, a priest is present, as well as a barber, obviously, to shave the child’s head. The hair is shaved (or buzzed very short) instead of trimmed because it is believed that the hair that a child is born with represents undesirable traits from prior lives. Thus, it is important to completely shave it off to purify the child of these traits and give them a fresh start. There is also a belief that after the Mundan, hair grows back thicker and fuller than before which can be attributed to the increased blood flow to the scalp after hair is shaved off.

Due to quarantining and social distancing, I did not have a party. I also did not have the opportunity to have my haircut at the salon as hair salons are non essential businesses and closed. Although I was pleased to find that many salons offer free haircuts to those getting their hair cut due to hair loss from chemotherapy. Fortunately, my husband occasionally cuts his own hair (and is an amazing person) and buzzed my hair at home.

I ordered a few chemo hats online and purchased a wig from Bravadas Wig Store prior to buzzing so I had headwear options. I thought it would be so fun to gather my girlfriends (and some champagne) to go wig shopping. But because of COVID, I did not do this. I have to give major thanks to Bravadas who met with me online, taught me all about wigs, what to look for, what to expect, how to use them and care for them, etc. They also showed me multiple wigs and shipped one out to me overnight. OVERNIGHT, guys! It fits like a dream and might just be nicer than my own hair. Also due are thanks to my cousins (but really sisters) Rani and Ellyse who contributed to my extensive wig research prior to buying. Fortunately, unlike cold caps, many insurances cover wigs when provided with a prescription for a “cranial prosthesis.”

I imagined the cut to be way more dramatic than it actually was. My hair now felt like my life. Countless hours of my life were dedicated to caring and styling it and what was my face without my hair? I put the chop off as long as possible, citing that I needed my headwear to be delivered before I’d cut my hair and with shipping delays due to COVID, who knew when my stuff would arrive. But when it arrived sooner than expected (-_-) I had no legitimate excuses left. One week after my first cycle of chemotherapy, it was time. I was going to zoom with my cousin, Rani, but then in the moment decided it would be best to minimize the witnesses to me being a crying, blubbery mess. 

I sectioned my hair into 6 sections and wrapped multiple small elastics every inch of each section to keep the locks secure. 2 more sections and I officially would have had a hair octopus on my head. Picture 1990’s Coolio, but longer hair. Then I snipped each one at the base and threw the hair into a ziploc bag. I haven’t decided yet whether I will get a wig made from it or donate it. Then I sat on my “bye bye hair” throne – our kitchen step stool which was placed on a cut open garbage bag that covered the floor and I was wrapped in a towel. Bzzz, bzzZZzzzz, bzzZZzzzzZZz. Goodbye hair.

I didn’t feel lighter. I didn’t feel relieved. I didn’t feel anxious. I honestly didn’t feel any different. I interpreted this to be good. After all, I was still me. I still don’t feel any different. But I did realize that in losing my hair I gained something. Some time. I was regaining the time I usually spend washing and blow drying and straightening and curling my hair. It’s part of my self care routine but it’s nice to have time to dedicate something else.

After the buzz, I video chatted with my 3 year old daughter, Ananya, who was with my parents. I had been preparing her for this cut this week almost as severely as I had been preparing myself. I didn’t know how she’d react and I just didn’t want it to be a bad reaction, whatever that is. Of course, being her jolly self, she pointed and laughed at me and said “Mommy has a haircut like Daddy and Nana (my Dad).” There it was. If those who I love the most can handle this with laughter, so can I.

Since then, I have worn neither my hats or my wig. I’ve actually been sporting the buzzed look pretty comfortably. Throughout my life, I have tried to wear many different hats (literally speaking) but have never developed a liking for the look on me. I know they are there if and when I choose to use them. They are a costly but effective security blanket.

Well, I am just wrapping up my second cycle of chemotherapy and expect to return in two weeks somewhat bald. Maybe I’ll be donning a hat or my wig, or maybe I won’t!

Kavita Jackson, MD

References

1. Chon SY, Champion RW, Geddes ER, Rashid RM. Chemotherapy-induced alopecia. J Am Acad Dermatol 2012; 67:e37.
2. Yun SJ, Kim SJ. Hair loss pattern due to chemotherapy-induced anagen effluvium: a cross-sectional observation. Dermatology 2007; 215:36.
3. Choi EK, Kim IR, Chang O, et al. Impact of chemotherapy-induced alopecia distress on body image, psychosocial well-being, and depression in breast cancer patients. Psychooncology 2014; 23:1103.
4. Lemieux J, Maunsell E, Provencher L. Chemotherapy-induced alopecia and effects on quality of life among women with breast cancer: a literature review.  Psychooncology 2008; 17:317.
5. Hesketh PJ, Batchelor D, Golant M, et al. Chemotherapy-induced alopecia: psychosocial impact and therapeutic approaches. Support Care Cancer 2004; 12:543.
6. Price VH. Treatment of hair loss. N Engl J Med 1999; 341:964.
7. Breitkopf T, Leung G, Yu M, et al. The basic science of hair biology: what are the causal mechanisms for the disordered hair follicle? Dermatol Clin 2013; 31:1.
8. Paus R, Cotsarelis G. The biology of hair follicles. N Engl J Med 1999; 341:491.
9. Symonds RP, McCormick CV, Maxted KJ. Adriamycin alopecia prevented by cold air scalp cooling. Am J Clin Oncol 1986; 9:454.
10. van den Hurk CJ, Breed WP, Nortier JW. Short post-infusion scalp cooling time in the prevention of docetaxel-induced alopecia. Support Care Cancer 2012; 20:3255.
11. Rugo HS, Klein P, Melin SA, et al. Association Between Use of a Scalp Cooling Device and Alopecia After Chemotherapy for Breast Cancer. JAMA 2017; 317:606.
12. Nangia J, Wang T, Osborne C, et al. Effect of a Scalp Cooling Device on Alopecia in Women Undergoing Chemotherapy for Breast Cancer: The SCALP Randomized Clinical Trial. JAMA 2017; 317:596.
13. Hershman DL. Scalp Cooling to Prevent Chemotherapy-Induced Alopecia: The Time Has Come. JAMA 2017; 317:587.
14. Rugo HD & Lacouture M. Alopecia related to systemic cancer therapy. UpToDate, Post, TW (Ed), UpToDate, Waltham, MA, 2014.

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Thank you, thank you, thank you

Since posting about my diagnosis on social media today, I have been overwhelmed by the response. So many messages and good vibes. I feel so amazingly supported. Seriously, thank you!!!

My diagnosis

So, how did I get here? This is arguably the most important part of this story to share, and fortunately, very simple. I felt a pain in my right breast in late December 2019 and upon examining myself, I noticed a lumpy mass. I did not have a primary care doctor at the time as I had just moved to the area and was previously healthy – my medical history: two relatively uncomplicated pregnancies and GERD – thanks kiddos!

I quickly got a primary care doctor who recommended a mammogram. She was astute and visibly concerned. I appreciated her concern, but it made me laugh a little on the inside, because I already knew this was something benign, like a fibroadenoma or fibrocystic changes. But I was ready for the work up and then talk about resection if appropriate.

The mammogram was abnormal, and followed by an ultrasound which was also abnormal, and followed by biopsies. Then BAM -> cancer! Invasive ductal carcinoma.

*Medical Tidbit* Invasive ductal carcinoma, also known as infiltrating ductal carcinoma, is the most common type of breast cancer, accounting for up to 85% of breast cancers (1). Approximately 180,000 people are diagnosed with it each year (2). The term invasive or infiltrating means that the abnormal cells have spread outside the milk ducts and into surrounding breast tissue.

I remember receiving the notification on my phone that the biopsy results had posted. I had a few more hours left in my 11 hour shift, one of my longer shifts that usually stretched to 13 hours. I’m generally too busy to answer phone texts or messages on shift. My husband and family know to call me if they need a response from me when I’m working, otherwise I’ll see you when I see you. But I had been eagerly checking my phone throughout the day, expecting the results. I waited to look at the results until I got home. You know, just in case.

Upon reading the results, I entered this fog that loomed for the next few weeks. I was in disbelief, emotionally labile and confused. I didn’t know what to think.

I had only told my husband what was going on a few days before getting my biopsy results because I’m bad at keeping secrets from him. I literally tell him everything. I have been for the last 12 years and I was silly to think I could keep this from him any longer. But now how was I going to explain this to anyone else? I waited to tell anyone until I could figure out how.

How long had this cancer been present? Could it have been detected sooner if I performed regular self-breast exams? or if I had a mammogram sooner? Who knows. When I received my diagnosis, I was fixated on these questions. In addition to denial (I was thoroughly convinced my results were mixed up with another patients), I was stuck on the how and why. But, I will never know. I know, it’s not possible to know this information. I realize this search for answers was also a search for something to blame. Something, anything, to blame for the fact that I had cancer. Every cause has an effect, right? So what caused this?? I will never know.

Kavita Jackson, MD

References

1. Correa P and Johnson WD (1978). International variation in the histology of breast carcinoma. UICC Technical Report Series 35: 36-65.
2. American Cancer Society (2020). Breast Cancer Facts and Figures 2019-2020. Atlanta: American Cancer Society.

It’s Chemo Day!

Today is my first day of chemotherapy. I was diagnosed with breast cancer exactly 3 weeks ago. That is a story in itself, brief but important, and I promise to explain in my next post. I did not handle the news well (who does?) and I have just begun to wade out of my denial. Starting chemo is a huge milestone, in that it has made this diagnosis more real than ever to me. And with it this little, magical stream of optimism has started to flow within me. Hope.

Kavita Jackson, MD