• On a scale of 1 - 10 how do you rate the fear/stress/anxiety/horror of losing your hair? 1 being don't care, 10 being freaked out.

    Asked by GregP_WN on Monday, April 9, 2018

    On a scale of 1 - 10 how do you rate the fear/stress/anxiety/horror of losing your hair? 1 being don't care, 10 being freaked out.

    Does it not bother you a bit? Or does the mere thought of it freak you out?

    Some people don't care while others are over the top, where are you on this? I will say I was a 1 on the 1 to 10 scale, I really didn't care. I lost mine twice, once with chemo and once with radiation.

    38 Answers from the Community

    38 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      7

      over 1 year ago
    • Ejourneys' Avatar
      Ejourneys

      I was intensely curious, so that probably puts me in the negative numbers. :-) I wrote about my experience and excitement (with pictures) here:
      https://csn.cancer.org/node/275914

      My oncologist was much more concerned about how I would feel than I was! He warned me twice that I would lose my hair. So I printed out and brought him this kicka$$ photo (the one on the left) of Persis Khambatta, who went bald to play Ilia in Star Trek: The Motion Picture -- in case that image might help others:
      http://static.dailyforest.com/wp-content/uploads/2017/12/17075231/Persis-Khambatta-Ilia.png

      (My oncologist is Indian and knew of Khambatta, who was already very famous in India before Star Trek made her famous here in the US. He was unfamiliar with her role as Ilia.)

      My chemo curls were another story; THAT weirded me out. Every time I stepped out of the shower I felt like singing "On the Good Ship Lollipop," and not in a good way. :-) Here's what I mean:
      https://c1.staticflickr.com/1/582/23291437014_eefa446ae4_o.jpg

      over 1 year ago
    • banditwalker's Avatar
      banditwalker

      I would say a 1. I actually did not mind too much. I knew it would grow back eventually and it was just another puddle to step over. Now I am having thyroid problems and my hair is falling out slowly but regularly. This time I'm scared it won't grow back. This time I"m at a 9.

      over 1 year ago
    • Wilson59's Avatar
      Wilson59

      1 for the hair..... 10 for the moustache.

      over 1 year ago
    • cllinda's Avatar
      cllinda

      8 for hair loss. Because then I knew everyone I saw knew I was sick.
      And even at home, if someone came to the house I would run to get a hat on my head. Even my daughter's boyfriend never saw me without a hat.

      over 1 year ago
    • Carool's Avatar
      Carool

      I'll second Wilson59! Okay, kidding aside, I'd say 4.

      over 1 year ago
    • andreacha's Avatar
      andreacha

      Perhaps because I've only been on an oral chemo so far - my hair has thinned only, not actually fallen out. I had had a couple of troublesome cowlicks (sp?) so that didn't help my look. What shocked me was that my hair turned from a medium brown with a few scattered gray hairs to completely white overnight during the third week of the regimen. Everyone loves it but I truly miss having some thickness to my hair. I was prepared by the Dr. to lose it all and would have been a 10 for me. Every time I brush or comb my hair some comes out. But, at least I am here to complain.

      over 1 year ago
    • SandiA's Avatar
      SandiA

      Well they said I would not lose my hair on my treatment option, but they did say I would lose some hair during radiation. I would say it was about a 4. Didn’t want it to fall out but wasn’t overly concerned.

      over 1 year ago
    • geekling's Avatar
      geekling

      @Ejourneys, how in the world do you stay so organized?

      over 1 year ago
    • Ejourneys' Avatar
      Ejourneys

      @geekling, I chronicle like crazy, keep lists and spreadsheets, and have about a bazillion bookmarks. Helps keep me sane. One thing that kept me going through chemo (especially the first cycle) was keeping detailed records of my side effects -- it made being listless that much more tolerable.

      Speaking of thinning hair, the anastrozole has been doing a job on mine. My hair was thin to begin with. After chemo it grew in thicker, but that was short-lived.

      over 1 year ago
    • beachbum5817's Avatar
      beachbum5817

      For me it was a 10. When the doctor told me that I had cancer, I didn't flinch. It was what I was expecting. When he told me that I would need chemo, I asked if I would lose my hair. When he said yes, that is when I totally lost it. Yes, it did grow back, but it is nowhere like it had been before I lost it.

      over 1 year ago
    • Dltmoll's Avatar
      Dltmoll

      Maybe a 3. It bothered me, but I knew it would come back. I had a great wig, which I only wore to work because I felt it every minute. Loved the curls while I had them.

      over 1 year ago
    • Carol1286's Avatar
      Carol1286

      A 10. I had extremely long hair, do I had a lot of it cut off and donated it to Pantene. I thought I'd be ok when my hair started falling out, but I found it quite traumatic. I sobbed in front of the mirror when my hair was coming out in large clumps. And my scalp actually hurt. Like a feeling of pins and needles. I know, it sounds vain, but if a person doesn't go through it they don't understand. Cancer has become a reality that you can actually see now.

      over 1 year ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      Actually I cut my hair short when I was 1st diagnosed expecting all of my hair to fall out. But I only went through 2 rounds of chemo. Mostly I got radiation. I did lose some hair at my nape where the radiation was pointed. so I was a bit disappointed that my hair didn't fall out. I was looking to wig shopping. But I still keep my hair short. Makes it easier when you're hanging over the toilet!

      over 1 year ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      One good thing about radiation or it might be my ruined thyroid. I don't have to shave my legs anymore. I only get patches. Also no underarm hair!

      over 1 year ago
    • mmnorris' Avatar
      mmnorris

      1. I’ve been without hair for almost a year now. I never wore wigs, just hats, but recently I just decided to get over it even more and just go around bald. I am excited now though because my hair is starting to sprout, and I am glad to see it again.

      over 1 year ago
    • fiddler's Avatar
      fiddler

      0
      because I was numb from the diagnosis to begin with. I didn't know what to expect next after the dx. I've never known anyone who went through cancer tx. Anything that happened was endured without emotion. Luckily the wig was an improvement on my post-menopausal thin hair. Got lots of compliments, unfortunately (because I knew I had to reveal my real hair eventually LOL).

      over 1 year ago
    • Gymmom's Avatar
      Gymmom

      Probably a 2. My daughter came and shaved my head before it fell out. I was surprised to see that I have a nicely shaped head. Being diagnosed at stage IV, I felt I had bigger fish to fry, and the hair would grow back. It did. Mine was always curly, and now it's straight.

      over 1 year ago
    • BoiseB's Avatar
      BoiseB

      I would say 1 my biggest concern when it started to come out was that when I took a bath it would clog the plumbing. I was lucky my daughter had a friend who was a hair stylist who came over to my place and shaved my head. Both myself and the plumbing survived.

      over 1 year ago
    • HeidiJo's Avatar
      HeidiJo

      I thought that I would be more upset than I was. It turned out that it was a good thing not to have to worry about holding it back when I puked, or having to style it when I went out.

      over 1 year ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I had long hair when diagnosed. I thought my stress would be at about a 28. I was actually zen about the whole thing. Got it cut short first -- I wouldn't have shed a tear except the stylist started crying. When I started shedding all over my desk at work, I knew it was time. Went into a walk-in place & asked her to shave it down. She was like -- are you sure. Yup, I'm sure. No tears, no nothing. Quite zen...

      over 1 year ago
    • geekling's Avatar
      geekling

      It is MY hair and Im keeping what is left to me.

      It is thinner than it was and slightly less curly.

      Im done risking everything without being fully informed of the risks. I dont onow how to tell a liar from someone telling the truth about so many medical things. I miss my teeth and ready smile too.

      8 opinions prior to treatment apparently isnt enough.

      Now I ask the doctor to give out my number and find two patients who will speak with me and explain how their lives are better due to any particular treatment.

      I just read last night (somewhere) that the 15th greatest cause of harm to humanity are doctors, themselves.

      My car didnt start today. It is being fixed now but Im grouchy.

      over 1 year ago
    • tripb's Avatar
      tripb

      Losing your hair is really tough because when it is gone everyone knows you are sick. I am going on my 12 week without hair and at this point I am still not use to having people be sad when they see me in a hat or worse yet without one.

      over 1 year ago
    • Maryflier's Avatar
      Maryflier

      I went from 4 to 0 in a moment. My hair fell out ( almost all at once) 2 weeks after my first chemo. It looked like there was a dead animal in the tub after my shower. I was getting my second treatment a few hours later, having a pity party in my head. I went to use the bathroom an saw there was a teenager getting chemo next door. A TEENAGER! I was so ashamed of myself for my pity party. Hair is insignificant when you look at the big picture.

      over 1 year ago
    • Jalemans' Avatar
      Jalemans

      Head hair was maybe a 2, but eyebrows & lashes freaked me out a bit more. Thankfully they grew back as hair on arms & legs did not.

      over 1 year ago
    • rpappe's Avatar
      rpappe

      11! I am on Vidaza for MDS DEL5Q after having severe allergic reactions to Revlimid and Aranesp. I will be on Vidaza for a long time (maybe the rest of my life) and I a losing the hair at the top and sides (already lost eyebrows and a lot of eyelashes). With long term exposure to Vidaza I don't expect my hair to grow back at all... Wigs in Arizona are not a good option... not sure what to do. Is anyone on this group on long term Vidaza? If yes, what are your experiences?

      over 1 year ago
    • Ruth521's Avatar
      Ruth521

      9, I was horrified to lose my eyelashes and eyebrows, and my hair started falling out on a Monday morning as I prepared to go to work, so I thought I was ready...but definitely was not.

      over 1 year ago
    • Raeleen's Avatar
      Raeleen

      8

      over 1 year ago
    • Raeleen's Avatar
      Raeleen

      8

      over 1 year ago
    • EmpathAgain's Avatar
      EmpathAgain

      It ended up affecting me much more negatively than I initially thought it would. I had already had a double mastectomy, so having already have lost my breasts, I didn't think my hair would be that big of a deal. Then, when it actually started to happen though, that was a different story. As a clump started coming out one day when I was taking a shower, I found myself really upset. Luckily, my mom was downstairs and when I showed her this big, thick clump of hair in my fist, she decided to go ahead and give me a pixie cut, so that seeing so much come out at a time (I had really thick, long hair at that time) would be less traumatizing.

      I was 29 when I was going through chemotherapy the first time and another thing I noticed was that it was hard (at least at the cancer center by me and a nearby salon that took prescriptions for wigs) to find a wig in a style that looked like it was a meant for someone near my age. I found one in the end that suited me fine, but after scouring the internet searching for extra wigs that were more appealing to my tastes (and my pocketbook, I couldn't believe how much some cost!) I found that companies that catered to anime cosplayers actually had some of the most realistic-looking, but also fashionable wigs out there. I found a Japanese company on Amazon that had long wigs with various colors and styles ranging from about $15-25 each made out of kanekalon fibers. I decided to buy a few and they looked and felt better than what I could find in any salon around me. Heck, they looked better than my real hair. What at first was a horrific experience for me actually ended up kind of fun when I had a few friends come over and basically give each other make-overs with my new wigs. Plus, kanekalon can be heated unlike many other types of synthetic wigs, so you have more freedom in styling options.

      When I lost my eyebrows and eyelashes, it was a little less traumatizing, because I'd mostly buy wigs that had bangs, so any attention to the loss of my eyebrows that might have been made was offset by the way I'd style my wigs' bangs.

      over 1 year ago
    • Paperpusher's Avatar
      Paperpusher

      Hubby freaked out over losing his hair. He was more hair conscious that a lot of women I know. Won't put the window down in the car if he's going somewhere so his hair doesn't get windblown. He was told he would start losing his hair until after the 2nd treatment but it started coming out in clumps in the shower and on his pillow after the first one. I offered to shave it be he preferred to let it go on it's own. He didn't have a great shape head for being bald and wore a baseball cap whenever he went out. He also lost his eyebrows, eyelashes and moustache. It had been a long time since I'd seen him without his moustache. His hair came back in a medium brown with some waves in the back instead of his previous straight dirty blonde.

      over 1 year ago
    • DonnainRI's Avatar
      DonnainRI

      I ended up losing quite a bit of hair about 4 months after my last immunotherapy treatment. I was not sure if that caused it, or the severe malnourishment that came from being unable to eat due to constant nausea and stomach issues, or the thyroid issue that arose from the immunotherapy. I was seriously freaked - probably about an 8. It did not all fall out and my hair was thick enough when it all started that I only had a few small patches of baldness, but it was also so dry from everything that happened that I had no clue what to do. Shave it? Get a wig or some scarves? Wait and see? My hair has always been my trademark, red, thick, and wavy, although it now gets some help from my hairdresser as far as color. The hair loss stopped as abruptly as it started and now my hair is back to being thick, but no longer just wavy. It's become downright curly. It is so hard to believe that just 6 months ago I was afraid it was all coming out!

      over 1 year ago
    • attypatty's Avatar
      attypatty

      1. Losing hair was the least worrisome and burdensome of side effects from chemotherapy. Although I did mind losing my eyelashes - eyebrows were easy to pencil on; eyelashes were more difficult. Without any natural lashes, false eyelashes looked weird - but not as weird as a face with no lashes. It's surprising how eyelashes enhance a face. I actually had fun with beautiful and exotic scarves tied in fanciful ways.

      over 1 year ago
    • pixiemary's Avatar
      pixiemary

      Probably a two. And that is really because the reactions of other people really bother me. In particular the pity thing is really irritating.

      over 1 year ago
    • Jolicross' Avatar
      Jolicross

      I would say I worried at around a 4 or 5. I knew it would come back and had a few cute, little short hairstyles chosen for when that time came. Well, ladies, that time NEVER came. It has been 5.1/2 years and I’m STILL bald, with no eyelashes, eyebrows or even nose hair!! It’s terrible. I’m stage 4 Denovo with Mets to my bones and brain ( I have a 6 inch scar on the back of my head from a surgery to remove a cancerous tumor in my brain) I live on SSI, so I don’t have money for a decent wig and I’m tired of scarves and hats .....the longer God blesses me..... (And YES, I DO FEEL BLESSED with the extra time He has given me..... as I was initially given 6 mos to 1 year to survive) the harder it is to be okay with not having hair, or at least a good wig. So, if I knew then what I know now, my answer would be 11.

      over 1 year ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      I have heard of henna tatoos. they are "painted" on so they are not permanent, but last a week or so. Also you have to watch for allergic reactions. Some people are allergic to the henna. I have a foot long scar on my leg from hip to knee where they took tissue/meat for the flap surgery. If I could affort it I would have one of those 3 dimensional tatoos done. Probably with flowers or birds spilling out. Nothing Gory. Anyway we are where we are & I refused to be ashamed or embarrassed by it. I say no matter what "ROCK IT" as best you can. At least your grandson isn;t inviting everyone over to watch you feed yourself throught your PEG tube!!! Had to stop that one!

      over 1 year ago
    • Rkou's Avatar
      Rkou

      I never considered myself vain or even pretty but I was initially stressed over losing my hair. After my first treatment, I spent way too much money on a wig. I cried at the wig salon. A few days later when my hair started falling out, I had my head shaved. I cried again. In the end, I only wore my expensive wig a handful of times. What a waste. I had bought several hats which I also hated so I mostly wore scarves and bandanas. I had a nice shape to my head so being bald really wasn’t as bad as I thought and when around the house, I didn’t wear anything. But losing my eyebrows and lashes was way more traumatic then I thought it would be. I looked so sick without eyebrows and lashes.
      Once my treatment was over, my hair came in very dark (goodbye blonde) and I was quickly ok with going into public with nothing on my head. Several times I got compliments from people in restaurants and stores on my chic hair style. My hair has now grown back but is much darker then it used to be and although I didn’t think it was possible, it is more limp. No curls for me! And believe it or not, I’m actually contemplating going ultra short again. After chemo, my facial skin lost elasticity and my hair changed color and texture so every time I look in the mirror, I don’t recognize my reflection but in the grand scheme of things, these are small concessions.

      over 1 year ago
    • WoodsRLovely's Avatar
      WoodsRLovely

      I was devastated a year back when first diagnosed! When I found out I would have to do chemo, I went to the one person who could help - my hairdresser! She put me at ease right away and she cut my long hair short. My hair didn't fall out right away - it thinned out a lot, but I never lost it completely for some reason. I still had a thin veil of hair. Weird. Once chemo ended, my hair grew back quickly - still a red head and no gray thankfully, despite being in my late 40s! Tough part - doing a stem cell transplant with BEAM chemo next month, and that will make me lose my hair again. Now I am just resigned to it...whatever...it does grow back...

      over 1 year ago

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