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Expert Tips on Wigs and Hair Loss: Community Q&A

Expert Tips on Wigs and Hair Loss: Community Q&A

Wigs are a hot topic in the Community at Breastcancer.org, especially in our Chemotherapy forum. Many people diagnosed with breast cancer who experience hair loss from chemotherapy find wearing a wig to be the best solution for them. But for many, wearing a wig is a brand new experience, so they have lots of questions.

To help answer some specific questions about choosing, wearing, and styling wigs, we spoke with wig expert and advocate, Carliz Sotelo Teague, founder of Wigs.com. Below, she answers real questions (edited for clarity) from our Community members who are experiencing or concerned about hair loss from breast cancer treatment.

And share comments or additional questions here!

Read the Q&A here.

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Comments

  • DaynaLayna
    DaynaLayna Member Posts: 1
    edited October 2018

    I have a friend who colors wigs for a living. She got me an 18" human hair wig and I wore it maybe 5 times. I figured out how to make it fit, you have to mild it like a baseball cap brim in the front. It was HOT! My head was always sweaty and the few times I went out with it on, in cold weather I ended up in the bathrooms for a head 'breather'.

    I found long cotton caps that I preferred. I also decided everyone who visited me at home would see my head naked.

    My hair started fall out after my second AC and started to grow back after 1/3 of taxol chemo (had 12 weekly). BUT my eyebrows and nose hair fell out. It's really weird to lose nose hair. Allergy and colds we're like waterfalls. Keep tissues close.

    My hair is growing back great! I refuse to cut it! I'm letting it grow in naturally until it's as long as I want it to be.

    I THINK IT IS IMPORTANT TO NOT CUT YOUR HAIR UNTIL YOUR HAIR IS LONG ENOUGH TO CUT.

    Right now I don't want my hair any shorter than it is so I'm not touching it. My friends say I should shape it up or cut it, even color it to make it look better. I haven't done that. It's delicate, there are new follickes growing. If i hurt them they won't be as strong as they could be if i just leave them alone.

    Looking back I realize I loved all stages of my hair growth from my first two little sprouts and now I love my little 3/4" pixie.

    My wig was too irritating to deal with so I just put it on the self

    Enjoy shaving your head! It's exhilarating! Enjoy your bald head- I had everyone rub it for good luck! When your hair starts to grow back, love every hair on your body.


    Cancer SUCKS! But the person inside and outside doesn't!!!


    I definitely DID NOT feel this positive until now. Hang in there. Eventually it's what happend versus the crap that is happening!!


  • moderators
    moderators Posts: 8,637
    edited October 2018

    DaynaLayna, wow, thanks for sharing all this! This is so inspirational. We welcome you warmly to our community.

  • Dornob
    Dornob Member Posts: 1
    edited November 2018

    I was not as lucky as far as my hair, eyebrows and eye lashes growing back after my TAXOTERE treatment. My oncologist said it was very rare not having hair grow back but occasionally it has happen. I am one of those rare victims. I am, however, grateful that I am cancer free.

  • gussy
    gussy Member Posts: 77
    edited December 2018

    I was very fortunate in that my favorite wig was extremely close to the hairstyle I had had so that most people didn't realize that I was wearing a wig unless I told them. I often said that it was the hair I always wanted as it was a bit thicker than my own hair and styled easier than mine. My last chemo was the end of Jan. and now in early Dec. I can look in the mirror and think that I'm beginning to look like myself again. I have had my hair cut, colored and styled which has helped me immensely. The only problem that seemed to have occurred is that I developed a sort of cradle cap on my scalp that my hairdresser said was because of the wearing of the wig even though I scrubbed my scalp whenever I showered which was frequently. It has resolved with a detox shampoo and scrubbing. Other than that the wig was a wonderful thing to have but hopefully, I will never need to wear it again.

  • cria
    cria Member Posts: 9
    edited December 2018

    I did cold capping and had good success with that on my scalp, but lost my brows and lashes shortly after starting AC (after 12 weeks of taxol). I am NOT good at drawing brows on and can't seem to find a pencil/powder that matches my natural brows (my hair is dark blond), so I did a little research and bought a set of eyebrow wigs! The ones I got have a clear flexible acrylic backing with human hair embedded in the backing. I love them and they are so much easier for me to just glue on my face. Noone at my infusion center had seen anything like it before and were very impressed with how real they look from a little distance! They were a little too blond, so I put a little brow powder on them and its close enough. I got mine from headcovers.com, but they are on Amazon and other sites too.

    Now if only lashes were as easy....

  • PennyK
    PennyK Member Posts: 36
    edited January 2019

    I was told today that I could use the Dignicap during my chemo sessions and that the estimate is a 70% chance of losing 50% or less of my hair with my type of chemo.The problem is the cosf: $3,000. Most insurance won’t cover it and I don’t qualify for subsidies. I don’t know what choice to make. I have a lot of unpaid medical bills. If I do this and still lose all my hair, I’ll be devastated. Has anyone else been through this decision?

  • MLAnne
    MLAnne Member Posts: 65
    edited January 2019

    As to the hair, I couldn't justify the high cost of cold-capping. A few hundred for a good wig vs a few thousand and no guarantees.

    I am only 7 days post first chemo and haven't noticed anything yet. BUT I decided I wasn't going to wait and went out and had a wig fitting today. Insurance isn't going to cover it even though I got a prescription, but I can at least try to get reimbursed through my HSA. I know I probably paid a bit more but I wanted a professional fitting by someone who has been in my shoes. My mom came along and we made a day of it. I go get it next week but I am not expecting to need it til February. The sobering fact my fitter shared, which I hadn't considered, isn't so much that I will lose the hair as it might take 6 months or more before it grows back enough to not look like 'cancer'.

  • PennyK
    PennyK Member Posts: 36
    edited January 2019

    I am also getting fitted for a wig on Tuesday. I am still considering the cold cap for the reason you mentioned...it will be over a year before my natural hair is back to its current length (that's if it starts growing right away). I've always believed my hair was one of my best physical attributes. I am a professor, so I am always presenting to either a class or a big group. I want to feel confident, not insecure. I spend close to $200/month on my hair, so that's $1200 I won't spend in the next year. I just don't know what to do.

  • Rojsn
    Rojsn Member Posts: 2
    edited January 2019

    Hi, I will have my first chemo next month February 15th and I would like to know where can I find wig? Is it good idea to buy before starting chemo or not

  • laurencl
    laurencl Member Posts: 203
    edited February 2019

    Has anyone tried any of the online wig stores? Interested in feedback. Thank yo

  • samruns
    samruns Member Posts: 18
    edited February 2019

    @laurencl I went to an in-person shop and bought 2 so I knew 2 brands sizes and colors. I then bought 2 more online using the knowledge i gained from the first 2 I bought from the shop. I used wigoutlet.com . Wig was brand new and arrived faster than the one of the ones I ordered through the shop (the other they already had in stock). That said, the shop experience was KEY. I had a wonderful woman who took her time explaining sizing, all the different types, how to care for it and my scalp etc. She told me to look online once I knew which brands fit.

    I also bought a couple of headcoverings from headcovers.com . They allow you to pay with your amazon account so that was convenient.

  • Onlyme64
    Onlyme64 Member Posts: 12
    edited March 2019

    I am finishing my first part of my treatment, I am doing AC&T. I am using a cold cap and so far, I am just shedding and thinning. Of course, there was one area on the back of my hair where it was knotted and I putting the hair out of my head and my hair does cover that area.

    my question, going into the taxol part. will the shedding stop and hair start growing back?

  • cbk
    cbk Member Posts: 323
    edited March 2019

    I did not cold cap, but my MO told me I would grow on taxol and I did!!😁

    I did lose all my brows and lashes on taxol though...and every other hair on my body. But started to grow head hair.

    Wow that’s amazing you kept your hair on AC. Very impressive....I didn’t think it was possible.

    Best of luck to you.

  • moderators
    moderators Posts: 8,637
    edited August 2019

    Calling Philadelphia folks who could benefit from learning about wigs, and receive a free wig and fitting from Wigs.com. We are seeking people who are about to enter chemo, or are in treatment already. Wigs.com is partnering with Breastcancer.org and hosting a press event scheduled for next Friday, March 29 11am -12:30 p.m. ET at Lankenau Hospital. Please PM the Mods if you are interested.

  • Onlyme64
    Onlyme64 Member Posts: 12
    edited March 2019

    I am doing everything that is recommended not to put stress on my hair. I lightly wash it air-dry it I have not blow-dried, curling iron, straightener. I basically air dry my hair use detangler leave in conditioner , all chemical free shampoo and conditioners. I wear a silk cap at night. Plus using the cold cap. My insurance covered the cold cap so I said why not try it and so far knock on wood I'm just shedding and thinning. Just one more treatment of the AC then I start my taxol.


  • msphil
    msphil Member Posts: 185
    edited April 2019

    hello yes my wig was very close to my style also it was streaked with same color also I gave it away to cancer suite once my hair grew back in. I had my Bff who was a hair stylist cut my hair down very close before the rest started coming out in clumps still was extremely difficult. But thank God I am now a 25yr Survivor this yr. Hope with daily got me thru. Hang in there. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast then got married was planning when diagnosed then 7wks rads and 5 5yrs on Tamoxifen.

  • FrackingHateCancerMPBC
    FrackingHateCancerMPBC Member Posts: 33
    edited April 2019

    Hi everyone,

    Fracking here. Well my hair is gone. This is my first WIG day. Did anybody mention already the American Cancer Society? I did a search and did not see it on this thread.

    American Cancer Society, one free wig a year. Nationwide, all the time. It's one brand new beautiful wig fitted by their wig person, mine called this the funnest part of her job. They NEVER charge for wigs. The wigs are donated by PANTENE I believe. Majority of the wigs are synthetic and I think they have some human hair as well but I don't know. Beautiful wigs, expert fitter.

    It was such an easy fix for me, because I know nothing about wigs and had ZERO time to learn with all the treatments and doc appts, surgery prep, acceptance etc..

    I highly recommend them. Just call the ACS main line. I don't think the info on the ACS site is up to date. On the site it sounds like they don't have the program, or may have the program but may not etc, but they absolutely do, I just used it. I would have no idea what wig to get ever. I'd do it wrong. They do, as you can imagine, they do it all day, and not for money, so that's just awesome. They had three local ACS wig shops within 30 minutes of my house. I chose the one that was open the most made an appointment, they were super flexible and got that done before my first surgery which was also before CHEMO. Live savers they are for sure in so many ways.

  • mountainmia
    mountainmia Member Posts: 857
    edited April 2019

    Fracking, thanks so much for the update on ACS wigs. What a great and generous resource! I'm still pre-treatment (surgery this week, rads and chemo to be decided afterwards) but am learning what is possible for my year. This is very helpful.

  • Stephy01
    Stephy01 Member Posts: 5
    edited May 2019

    Thanks for the FAQs, I will surely pass it to my aunt who is going through a tough time due to hair loss. She is still getting used to the wig that we got her

  • dogmomrunner
    dogmomrunner Member Posts: 501
    edited May 2019

    Thanks Fracking! I have yet to find a wig that is similar to my hair anywhere. I think I would rather use hats then show up with a totally obvious wig. But I probably should have one at least for work

  • Sdcf346
    Sdcf346 Member Posts: 1
    edited June 2019

    I know what you mean, I was wearing wigs too for a while but noticed my hair was not growing like it did prior to undergoing chemo. I couldn't hardly find anything to help prevent hair loss from the Chemo, it wreaked havoc on my body. After the fact, I have found success with this hair growth oil. I normally don't buy them but this lady makes a hair growth oil for her daughter so it's all natural. And boy has it helped my hair grow in places it's never filled in before. Finally my hair is growing like it used to before chemo. I think it was called Adorani organbut you'd have to look it up on Etsy.

  • Abbidoodle
    Abbidoodle Member Posts: 21
    edited June 2019

    One week out from 1st chemo treatment. I have purchased a few pre-tied scarves so when it starts to come out I can shave it and have something to cover it. Not ruling out a wig, but with a hot Carolina summer and my natural tendency for my head to sweat, decided to wait for now. Anyone have any advice on good but not too pricey head coverings? So far I've purchased some from Amazon. Any info/tips would be welcome. Thank you.

  • debal
    debal Member Posts: 600
    edited June 2019

    abbi, I purchased from headcovers.com . Some are really soft and look nice. I hope you are feeling well

  • dogmomrunner
    dogmomrunner Member Posts: 501
    edited June 2019

    Abbidoodle- I'm in NC and I know what you mean. Luckily NC is a little less humid than GA, where I used to live. I've gotten headcovers beanies and headbands. TLC (Google TLC and hats) also has some. On Amazon you can find some. Search for beanies and hats for cancer patients

  • mountainmia
    mountainmia Member Posts: 857
    edited June 2019

    I bought several things at headcovers.com and rather wish I hadn't. Two of them are pre-tied scarves and they are much too small, total waste of money. One scarf is not the color I thought it was. I like the feel of the fabric but don't like the color.

    This is not to bash the company. My real point is, better to not spend a ton of money on scarves, hats, or other covers until you're more sure of what you want.

    The things I'll probably use most are ones I bought cheaply. I got a few scarves at a local consignment store, at less than $2 each. I bought a new ball cap at Walmart for a few dollars.


  • Abbidoodle
    Abbidoodle Member Posts: 21
    edited June 2019

    Thanks for all if your replies. It's funny how the hair thing has been what I've been so focused on until last night and today (a week after 1st treatment) when I started having throbbing shooting pains in my lower back, sternum and headache, due to the Nulasta. I was told to take the Claritin for 5 days after therapy. I had no pain at that time, but due to the steroids now easing off, the pain has started. So today the hair is the least of my worries. I've taken Claritin, but if it is helping, I sure can't tell. Wish docs/ nurses don't put time frames on the symptoms, as my symptoms haven't showed up when predicted. Now I know that the most common side effects have their own time period and not to have expectations of when something might happen. This experience truly is about taking one day at a time!

  • margun
    margun Member Posts: 385
    edited June 2019

    I lost my hair during Ac. I had my 7th taxol and I noticed some hair on my head. That means it is coming back and will grow with the same rate as usual. I would like to know when I colour my hair without damaging it

  • christibcs
    christibcs Member Posts: 3
    edited June 2019

    I read about the cooling caps and saw there were some women who kept all of their hair. But I also read there is some rare and very small chance of getting scalp cancer if it is protected by ice during chemo treatment. I had a migraine IceKap that I used occasionally, throughout my chemo treatment, and a bit beyond it while the chemo was still in my body. I was fearful of damage so I only wore it for a few minutes each time I decided to put it on for each day of chemo.

    I also turned on the cold water at the end of showering to push the blood away from my scalp. My oncologist had told me, for treatment for my numbness (neuropathy) in my hands to use cold water after washing in warm to push the blood away (hence, chemo), so I used the same logic for my head. The neuropathy in my hands is still there, but I'm starting to feel a difference now. It is slowly dissipating.

    I also bought natural shampoo and conditioner with biotin.

    I was taking a B-complex with biotin as well.

    And, I was trying to focus on foods that enrich hair growth and health.

    After chemo, I started using a 6-week hair growth treatment I purchased at my salon. I checked with my oncologist first. I ran any new chemical or supplement past him first. I still do.

    I did not lose all of my hair. I have no idea why, but maybe what I did above helped. I had 3 patches that fell out and some thinning, but a lot did stay put. I had gone to the salon when it began to fall out and my stylist convinced me not to shave it all off, but to start with a short haircut style, like a pixie, which I did. I was so glad I did after all because I did not lose it all. Long hair is heavier and will fall out easier, I think. I was careful as others have stated in gently washing and handling it. Since it was cut short, I didn't have to worry about drying it. It dried in minutes!

    My stylist also suggested I get a wig with bangs due to eyebrow loss. Another good tip. I did not lose all of my eyebrows or all of my eyelashes either. I had to bring my wig into the salon to trim the bangs a bit, too. It was odd. He put it on a mannequin and then I kept trying it on. It was hard for him to work on it when it was on my head.

    I always wore scarves to the hospital (I just thought they might be more sanitary versus a wig - I was really paranoid about germs) - and it did not interfere with my port infusions. But, I did buy a cute wig and had been wearing it every day when I left the house otherwise (until today). I tried to match my hair color and went with a classic style that wouldn't change the way I looked too much with bangs for my eyebrows as mentioned above. I went to a local shop to buy it because I was clueless and the lady who owned the small shop helped me a lot in deciding which one and in the care of the wig. It took me a while to get used to.

    In fact, today is the day I decided to stop wearing it. It is summer time and my hair has grown in enough where the patches were, and I am feeling more comfortable.

    Like others have mentioned, check with the American Cancer Society or other charitable organizations. You can find wig outlets in your local area through some of those websites. Some state that they cater to or only to cancer patients. Your hospital or breast clinic resource center should have some for loan or know where you can do that, or where you can buy wigs with discounts. My shop specialized in cancer patients which made me more comfortable to visit. They were very nice and understood privacy issues. The owner had gone though breast cancer treatment so she knew the ins and outs of wearing a wig.

    I bought a wig band to try to help the wig stay put at first, but in the end the band bothered me too much, so I went with hair pins as I still had some hair underneath to pin it to. I found some long curved ones online that fit the shape of my head.

    As I was told, have fun with the wig! Just choose one you feel comfortable and confident in.

  • HolgaGirl
    HolgaGirl Member Posts: 3
    edited May 2020

    Any insights on wig donations?

    I'm past treatment and my hair is growing back. I got a wig when I started but I never wore it, as it was summer when I went through chemo and it was just too hot. Then during the New England winter, it wasn't warm enough and I didn't like wearing the wig and a hat.

    Any suggestions on where I can donate my wig. It's human hair (not mine) and very nice.

    Thanks!

  • minustwo
    minustwo Member Posts: 13,354
    edited May 2020

    holga - I'd start a new thread with the title something like "free wig never worn" in the Chemo section,