Cancer During COVID-19

Cancer During COVID-19

I recently hit the gong in celebration of finishing my last cycle of chemo. As I reflect on the journey so far, it has been relatively smooth and free of complications. I am a “model patient,” per my oncologist. As if the onus was on me, the patient, to have selected this course. In truth, it is due to a variety of factors, many of which were not under my control. I’d be lying though if I said it didn’t feel a little victorious to know that as a patient I followed the textbooks in some way. Regardless, I am blessed and happy to be standing as I am today – I made it through chemo. And not just chemo–chemo during a pandemic! 

It is ironic how my breast cancer journey mirrors that of the COVID-19 pandemic. I had felt a mass in my right breast around the same time the first novel Coronavirus case was diagnosed in Wuhan, China. I was alarmed but mostly felt uncertain of the significance of both my breast mass and the new virus. Within days of receiving the results of my breast biopsy, the COVID-19 pandemic was announced. My life was officially tossed upside down… stomped on… then kicked off a cliff.

My breast center had closed shortly after I was diagnosed with breast cancer because of a COVID-19 exposure at the center. As many nonessential businesses started to close, I scrambled to find a radiology center that would perform additional imaging I needed prior to starting chemo. Fortunately, my breast center truly is comprehensive and amazing. They helped coordinate finding another nearby radiology center, sending my prior imaging to them for comparison and obtaining the final reads from them. With some mental tensity but minor delay, I was on my way.

As my ER colleagues delved head on into the pandemonium, I started chemo. As the pandemic ramped up in NYC, I was at the peak of my chemo. And as we started to gain some sense of control over the situation, the side effects of chemo started to improve. Some states started to open and Coronavirus cases surged while I underwent surgery; which, I have to mention was preceded by an unpleasant but brief nasopharyngeal swab for COVID-19 that will make me second guess every single nasopharyngeal swab I order going forward.

 —

Like most others, I quarantined as recommended and only left my house for 2 reasons since March 2020: 1) doctor’s appointments and 2) to get some sun on my porch. Isolation is not a new concept to people diagnosed with cancer. As immunocompromised individuals, people with cancer generally isolate themselves and/or protect themselves with face masks and frequent handwashing to reduce their risk of getting any sort of infection, not just COVID-19. So, regardless of the pandemic, I would be in quarantine.

I didn’t find it hard to stay at home. By nature–actually, by my doing–my lifestyle is active and often at odd hours of the day. School and medical training occupied about 95% of my life since graduating high school and increasingly so in the last decade as I specialized in emergency medicine and pushed my agenda of a personal life. I married my college sweetheart and had two kids during residency. 

On a given day, in no particular order, I may be working, sleeping, taking the kids to or from two different schools, grocery shopping or cooking, studying, bathing/feeding/playing with the girls, and I can usually squeeze in a shower every few days. There are stretches of days where I only see my children while they’re sleeping or only talk to my husband via text messaging. So, I welcomed being able to stay at home with them. I slept a normal circadian sleep cycle, ate meals with my family, got to put my kids to sleep and see them when they first woke in the morning (a relished rarity)… I got a brief taste of normal. 

Then chemo started and the girl’s schools closed in person sessions. Endless, uninterrupted time with my husband and two daughters was one of the unexpected silver linings of my situation. Obviously, I would have preferred to be in a better condition to be active with my kids but who says movie marathons aren’t quality time.

Seeing as I don’t know what the future holds regarding potential family planning due to the effects of chemotherapy, I would change nothing about my decision to have two kids during residency. Yes, it was crazy. Yes, I have a life-time of sleep to make up. And yes, there were many times I spent more time with my work colleagues than with my hubby and babies. But for many reasons it was the right decision for me. And my experience with breast cancer this year has reinforced that in my mind.

*Shout out to all my fellow parents in quarantine with their kids!* As unpredictable, chaotic and loud my job as an ER physician can be, it comes a close second to the challenges of being a parent. Hang in there! As parents, we do our best and our best is what we can do!

Of course, I am not alone in all of this. My village, so to speak, includes my husband, my family, my in-laws, my medicine colleagues, and friends, all of whom without my current standing is not possible. As part of a long term plan, my Mom and Dad were actually in town looking at apartments the day after I got my biopsy results. Within two weeks they were moved in. Then my Mom, who is a geriatric physician, was furloughed at her new job due to the pandemic. Suddenly, her and my Dad, who is retired, were free to help us with the kids. My Granny-in-law and Mother-in-law who developed flexibility in her job due to the pandemic also stayed with us for several weeks at a time to help. 

The timing of it all…

I am now recovered. The pathology from my tumor bed and lymph node dissection was negative – meaning no signs of cancer.

I am a survivor.

I am fortunate to have had an uncomplicated medical course, abundant support from friends and family, and a silver lined journey.

Although the pandemic has not yet recovered, the world is learning how to handle life with COVID-19. And I believe that we shall overcome this as well. Of course, as with any disease process – prevention is key! Maximize the factors that you can control to reduce transmission of COVID-19: wash your hands frequently, social distance and wear a mask. After feeling a total loss of control over my life this year, I think it’s easy to act in accordance with the guidelines to reduce transmission of COVID-19 to myself and others. I’m not saying it’s not inconvenient. I am saying I believe it’s the right thing to do.

I know you’ve heard about herd immunity and high risk populations during the pandemic. The “others” your actions are trying to protect, is me. I am 32 years old. I am a daughter, sister, wife, mom, cousin and friend. I didn’t choose to have breast cancer and I don’t want to die because of others actions (or inactions). 

It’s okay if you don’t care about me like that. I could be your Mom or Dad, brother or sister, best friend, significant other, or neighbor. I could be someone you care about a lot that you may not even know is immunocompromised. Maybe it’s not cancer; it’s their long-term steroids, or HIV, or diabetes, or their age causing their immune system to be more susceptible to infection. I didn’t have many choices this year but I do choose to take steps to reduce transmission and protect those around me. 

For people with cancer during this pandemic, the medical field’s objectives include maintaining beneficial anticancer therapies as well as protecting the providers that care for us (1). About 50,000 new patients are diagnosed with cancer each day that require treatment (2) and the pandemic doesn’t change this. Earlier diagnosis and urgent therapy is associated with significant benefits in terms of morbidity and mortality (3), so it is crucial for cancer patients to have access to appropriate medical evaluation and therapies in a timely manner. I anticipate people are experiencing delays in diagnosis during the pandemic because of limited access to healthcare for routine screening for cancer, like, mammograms and colonoscopies, and for evaluation of suspicious symptoms, like, breast masses or pain, or painless rectal bleeding. The pandemic is not a reason to sit back. As patients, I urge you to advocate for yourself and reach out to your primary care doctor, virtually, to discuss any concerns. 

Diagnosing COVID-19 in the general population can be challenging based on its vague and broad symptomology and imperfect tests. COVID-19 is even more challenging to diagnose in patients with cancer as its symptoms, such as, fever, fatigue, myalgias, anorexia, and loss of smell (anosmia) or taste (ageusia), and lab abnormalities, including, low white blood cell count (leukopenia), high white blood cell count (leukocytosis), high lymphocyte count (lymphocytosis), elevated liver enzymes, elevated inflammatory markers and elevated creatinine can also be due to cancer or cancer therapies. Combine this with several testing options which have limitations in their specificity and higher than ideal false negative rates and it can become messy figuring out if someone has COVID-19 or not.

The data regarding COVID-19 and patients with cancer is limited given how recently the virus emerged and it is primarily from Asia. Patients with cancer make up about 1% of all patients diagnosed with COVID-19 (4). It doesn’t sound like a large amount, however, cancer patients who are also infected with COVID-19 have TRIPLE the mortality rates than non-cancer patients infected with COVID-19 (5). Newer data from the same researchers shows that further out from diagnosis (after 30 days) mortality rates in patients with cancer actually increases (5). Even cancer patients diagnosed with COVID-19 that are otherwise in good health and don’t have other comorbidities–like me–have higher mortality than the general population.

As a new “survivor,”  I am at an increased but unquantified risk of contracting COVID-19 as my immune system recovers over the next several months and accordingly will follow the guidelines for a little longer than most. But hey, I made it to the other side! Could it have been better? Uh, yeah, obviously, by not having happened in the first place!! It also could have been worse in so so many ways and I am thankful for the course of my journey and all of the individuals who were a part of it in any way.

Kavita Jackson, MD

References

  1. Raymond E, Thieblemont C, Alran S, Faivre S. Impact of the COVID-19 Outbreak on the Management of Patients with Cancer. Target Oncol. 2020;15(3):249-259. doi:10.1007/s11523-020-00721-1
  2. Bray F, Ferlay J, Soerjomataram I, et al.. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. Cancer J Clin. 2018;68:394–424.
  3. Hansen RP, Vedsted P, Sokolowski I, et al. Time intervals from first symptom to treatment of cancer: a cohort study of 2,212 newly diagnosed cancer patients. BMC Health Serv Res. 2011;25(11):284.
  4. Zhang L, Zhu F, Xie L, et al. Clinical characteristics of COVID-19-infected cancer patients: a retrospective case study in three hospitals within Wuhan, China. Ann Oncol. 2020.
  5. Kuderer N, Choueiri T, Shah D, et al. Clinical impact of COVID-19 on patients with cancer. Lancet. 2020;395(10241):1907-1918.
Doctors Get Sick, Too

Doctors Get Sick, Too

The last several weeks I have felt up, I have felt down, I have felt too much and at times I have felt nothing. I am restless but too exhausted to do much. I am nauseous and my taste buds are failing me yet I am ravenous. I am awake and alert but my head feels foggy and aches. 

At the time of my diagnosis, my care team reassured me that they would do everything possible to help me maintain my sense of normalcy, to minimize the disruption that the cancer and its management would have on my life. As no one expects or plans to get cancer, I appreciated this effort to curtail its effect on me. I had just moved to a new city. I had only just started my dream career that I spent the last 12 years of my life training for. I was a wife, busy mom to two toddlers, a homemaker. In many ways, the life I had been planning since I was an adolescent had just started. For the first time in a very long time, I had felt I had my shit together. Never ever, in my wildest dreams was I prepared for cancer.

I tried to pretend that everything was okay. I didn’t talk about it. I didn’t think about it. I carried on with my shifts in the ER. On my second shift since knowing my diagnosis, I met a patient who resembled me in no obvious way but was also dealing with the exact same cancer. Triple negative invasive ductal carcinoma. She was also recently diagnosed and has just started chemotherapy. As we were discussing her presenting symptoms, I realized I had heard very little of what she had said and my eyes felt heavy and wet. My head was in another world.

I wanted so badly to break down and confess my own situation to her. To tell her I actually, really understood her emotions and fears. Not just claim the proverbial “I understand what you’re going through.” We doctors truly mean well when we say this and it is our best attempt to connect with our patients based on our countless hours of studying the intricate details of diseases – the history, the demographics, the pathophysiology, the diagnosis, the treatments, the side effects of treatments, the survival rates, etc. We study these in books and then experience them via the patients we take care of. We know that short of experiencing the illnesses ourselves, we cannot truly know what our patients are going through, but we try our best. 

But I said none of this. This patient didn’t come to the ER to hear my life story. I had to focus. Focus on what she was saying, examine her, come up with a game plan and keep moving. I had 2 more new patients on my list to go see as well as about a half dozen that I had already seen and needed to check on the progress of their work ups – were their labs back? Did they get their scans? How were their symptoms? Was anyone ready to be admitted or discharged? Run my list, run my list, run my list. There simply was no time to break down right now. People needed the doctor me.

You see, doctors don’t get sick. Or at least there seems to be this belief that as healers doctors must be healthy in order to care for patients or that we are somehow immune to the very maladies that we seek to treat. It’s simply not true. After all, we are also just human. Yet, physicians exhibit a tendency to overlook their susceptibility to illness and ignore their health (1, 2). 

This is only perpetuated within the field of medicine amongst physicians. Starting in medical school, I remember being told how sick you must be in order for it to be acceptable to call out of a clinical rotation. Generally speaking, short of being admitted to the hospital or experiencing intractable vomiting or diarrhea, you were expected to be present. 

Many times, the illnesses for which I write patients “excuse from work” notes are conditions that I have worked with. I have worked through multiple colds, migraine headaches, shingles, gastroenteritis and several weeks of contractions at 4cm dilated both times I was pregnant. It’s acceptable so it becomes the norm.  Like many other physicians, if there was any inkling that I may be too ill to work, there would be an email or text trail including my symptoms with updates throughout the day or hours leading up to my shift, to justify possibly calling out.

7pm: Just want to alert you that I’ve developed some GI symptoms. Likely mild gastro I got from a peds exposure today or my lunch. Still tolerating PO [per os, aka by mouth], hopefully will improve by the AM

1am: Symptoms still progressing despite zofran and pedialyte, will keep you posted.

6:30am: I’ve been toilet-bound most of the night, I don’t think I can make it through a shift in this condition. Sorry for the inconvenience.  

I called out sick once in medical school and once in residency. The initial relief I felt that I had demonstrated a justifiable reason to stay home and rest would eventually be clouded with guilt. Am I really unwell enough not to work? So-and-so worked a shift with gastro last week… What will my colleagues think? Then I wonder whether I should’ve just sucked it up and gone to work.

Why does someone who is sick (and knows it) choose to work? Sickness presenteeism is the term that describes exactly this and is remarkably high amongst healthcare professionals–up to 88% of healthcare professionals across the globe report some sickness presenteeism (3-14). In one survey of medical professionals (medical students, resident physicians and attending physicians), the majority cited they felt a professional obligation to fulfill work responsibilities when they are sick, with one third of participants stating they felt they had a professional obligation to “work no matter what” (15).  The majority also endorsed that they would work while sick to avoid creating more work for colleagues, avoid negative repercussions for themselves, and to avoid appearing lazy or weak (15). Across several studies, physicians seem to agree on the reasons they go to work despite being sick (3-14).

Although I am fortunate to say that I have received nothing but the warmest support and consideration from my employer and work colleagues, as an ER physician who is not working because of my personal illness during the Coronavirus pandemic, there is a varying level of guilt that I cannot shake off. If ever there was a time I was needed or could make an impact in the position I trained a decade to assume, it is now. And I’m not there.

Seeing what my physician friends and colleagues, all healthcare providers, and frontline workers are managing is astounding. I know you are all putting patients before your own families and even your own health – you are all heroes. But please, you cannot forget your duty to yourself to put yourself first. The Hippocratic Oath asks many things of us as physicians but it does not ask us to sacrifice ourselves.

In medical school, I  remember being taught that at the beginning of a code (a patient experiencing cardiac arrest) the first pulse you should check is your own. Textbooks and algorithms will tell you that you should check the patient’s pulse first. Well, duh, that’s how you identify cardiac arrest. However, for physicians, the concept of checking your own pulse first underscores the importance of evaluating and adjusting your physiology first. You’re not set up to think clearly and quickly to handle the life and death situation in front of you if you’re at the height of your fight-or-flight mode, with your heart rate pounding away at 200 beats per minute and emotions running wild. You must keep your physiology in check in order to appropriately take care of the patient’s crisis. Remember, without you–at your best ability–who will take care of the patient?

In the ER, my responsibility is to handle a variety of “life and death” conditions. I, at least mentally, take my own pulse before diving head on into these clinical situations and find it to be an extremely useful technique to hyperfocus to a state where I can do what I do best. While a helpful saying, I think it may inadvertently contribute to the pressure on a physician to be anything less than their best health at all times. The message is to check yourself, fix any issues and then take care of the patient. This puts the responsibility on the physician to fix any self-identified health issues which can translate into “be your own doctor.” You have the medical knowledge to do so, right?

All physicians have tried to self-diagnose themselves. It’s natural. I happened to develop shingles before my first exam of medical school. In immunology we had just learned about the varicella zoster virus, which causes chicken pox and can resurge years later as shingles, especially during times of physiologic stress. It was almost too easy to self-diagnose myself. I was evaluated at student health and the diagnosis was confirmed. When it feels like you’re living, breathing, eating and sleeping medicine, how can you not apply your profession to yourself?

What if you feel or identify something that isn’t as easily “fixed”? What if you can’t doctor yourself. Well, then what? There is no algorithm for this, but it seems the obvious choice would be to say something and go see a doctor.

Yet, this is so hard for physicians. Why? In a paper entitled “Illness Doesn’t Belong to Us” McKevitt and Morgan interviewed physicians with a recent history of illness to further understand why this idea that doctors don’t get sick exists (16). Physicians cited embarrassment, guilt and a sense of failure that they as a doctor succumbed to illness. When asked about the reasons why doctors “may not” get sick, physicians noted the importance of coping with pressure, stress and illness that is instilled within them during medical training. “The idea that you have to soldier on is very prevalent while you’re training.” They discussed difficulty with coping with illness, eluding to an unstated belief among physicians that “illness should affect them as badly as it does other people and that they should ‘work on.’ And most physicians in this study did work on. They worried about the burden their absence would place on their colleagues as well as judgement from their colleagues from being ill or being perceived as weak.

I think the following response from a physician highlights best why physicians may struggle with personal illness–

“Illness doesn’t belong to us. It belongs to them, the patients. Doctors need to be taught to be ill. We need permission to be ill and to acknowledge that we are not superhuman (Interview 52).”

Oh the dichotomy between physician and patient. We are by nature entangled yet somehow separated.

So, I have given myself permission to be a patient. I can be a physician and a patient. I am going to allow for things not to be my normal. I had already violated the mantra that doctors don’t get sick and now I’m not going to pretend like everything was okay for me. It’s okay not to be okay. It’s okay for this to disrupt my life. I’m going to allow it the time and energy that I allow every important aspect of my life. There are things I will lose with this experience but hopefully more that I will gain that will make me a better person and doctor.

This is not to say that physicians who are diagnosed with a medical condition cannot work. That’s absolutely not true. Many physicians have health conditions and also provide excellent care. Rather, I want physicians to recognize and accept that doctors get sick too, and that that’s okay–it’s the norm. Do what’s best for you and take care of yourself.

Kavita Jackson, MD

References

  1. Edney D. The myth of the invincible doctor. J Miss State Med Assoc. 2016;57(1):17.
  2. McCredie J. Exploding the super-doctor myth. Australian Doctor. October 16, 2007.
  3. Aronsson G, Gustafsson K, Dallner M. Sick but yet at work. An empirical study of sickness presenteeism. J Epidemiol Community Health. 2000;54:502–9.
  4. Hansen C, Andersen J. Going ill to work – what personal circumstances, attitudes and work-related factors are associated with sickness presenteeism? Soc Sci Med. 2008;67:956–64.
  5. Al Nuhait M, Al Harbi K, Al Jarboa A, et al. Sickness presenteeism among health care providers in an academic tertiary care center in Riyadh. J Infect Public Health. 2017;10:711–5.
  6. Bracewell L, Campbell D, Faure P, et al. Sickness presenteeism in a New Zealand hospital. NZ Med J. 2010;123(1314):30–41.
  7. Chambers C, Frampton C, Barclay M. Presenteeism in the New Zealand senior medical workforce—a mixed methods analysis. NZ Med J. 2017;130(1449):10–21.
  8. Chiu S, Black C, Yue X, et al. Working with influenza-like illness: Presenteeism among US health care personnel during the 2014-2015 influenza season. Am J Infect Control. 2017;45:1254–8.
  9. Esbenshade J, Edwards K, Esbenshade A, et al. Respiratory virus shedding in a cohort of on-duty healthcare workers undergoing prospective surveillance. Infect Control Hosp Epidemiol. 2013;34:373–8.
  10. Rosvold E, Bjertness E. Physicians who do not take sick leave: hazardous heroes? Scand J Public Health. 2001;29:71–5.
  11. Sendén M, Løvseth L, Schenck-Gustafsson K, Fridner A. What makes physicians go to work while sick: a comparative study of sickness presenteeism in four European countries (HOUPE). Swiss Med Wkly. 2013;143:w13840.
  12. Sendén M, Schenck-Gustafsson K, Fridner A. Gender differences in reasons for sickness presenteeism – a study among GPs in a Swedish health care organization. Ann Occup Environ Med. 2016;28:50.
  13. Szymczak J, Smathers S, Hoegg C, et al. Reasons why physicians and advanced practice clinicians work while sick: a mixed-methods analysis. JAMA Pediatr. 2015;169:815–21.
  14. Tan P, Robinson G, Jayathissa S, Weatherall M. Coming to work sick: a survey of hospital doctors in New Zealand. NZ Med J. 2014;127:23–35.
  15. Kaldjian, L, Shinkunas, L, Reisinger, H, et al. Attitudes about sickness presenteeism in medical training: is there a hidden curriculum?. Antimicrob Resist Infect Control 8, 149 (2019). 
  16. McKevitt C, Morgan M. Illness doesn’t belong to us. J R Soc Med. 1997;90(9):491‐495. 
Goodbye Hair

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.
My diagnosis

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!

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