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JulieKCA2013 View Drop Down
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    Posted: Mar 25 2013 at 10:42pm
I just started my first treatment of AC on 3-19-13.  My doctor said about two weeks after is when I will see my hair loss.  My family is still in denial that I am going to lose my hair, but I told them everywhere I read the AC treatment causes this.  How did you cope with hair loss?  I have always had a thick head of hair, natural curly.  To me this might be liberating, but I also have two kids who I need to think about them being use to mom with a ton of hair.  :)  If you got a wig did you actually wear it?  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 2:04am
I got an expensive wig and wore it for 10 minutes before yanking it off, and then I never wore it again.  It was really uncomfortable and I was having enough discomfort from the chemo and other aspects of cancer treatment.  I wore scarves and hats. I told my daughter (age 10) my hair would fall out.  She was sad and kind of anxious, but we had a chance to talk about it.  I got a buzz cut beforehand and she heard people tell me I looked cool and strong and beautiful.  I think it helped her to hear that..  When the hair started to fall out it was not a big deal for her.  She was actually fascinated and had some fun pulling out the spikes. Her friends were pretty nonchalant about it too. I have friends and relatives who've had the same experience with their kids.    I found that kids were actually the most easygoing - I just told them I take medicine that makes your hair fall out.  That made sense to them and they moved on.  It was adults who were weird and uncomfortable - adults have all this baggage because they think OMG cancer, they wonder "what kind" and what stage, they think "if she got cancer I could too," etc, etc etc. 
It really does help to get you hair cut short before it starts to fall out. Its more like you've taken control.  Plus, that way you get to do a little experimenting to see what cut will work for you once your hair starts to grow out again.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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JulieKCA2013 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 6:02am
My kids are 5 and 3.  I have told them my hair will fall out around easter from the medicine.  They will be on spring break this time so I am hoping it helps the transition.  I volunteer at my sons school so I wasn't sure if I should get something to help my son.  I told the kids they can cut my hair this week, hoping that helps too.  Thanks.  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 6:25am
Dear Julie,

Welcome to our forum. 

I met recently with a breast medical oncologist in California who recommends the 'cold cap' which she says sometimes really helps with hair loss. I just wrote her and asked her if she recommends a specific brand.

If you try it and it doesn't work I wanted to suggest a book called Turning Heads written by my friend Jackson Hunsicker.

If you are comfortable sending me your address in a PM I will send you a complimentary copy otherwise it's available on Amazon. I first got this book for my daughter in 2004 when she lost her hair and she found it helpful. Basically there are photographs of 50 women (with short vignettes) who have lost their to chemo and the clear message is "I may have lost my hair but I am still here, as is my grace, intelligence, courage and beauty. It is a lovely, inspirational book that really helped my daughter and others have told me they found it a good resource.

I will not use your address for any other purpose but understand if you are reluctant to send it.

good luck to you..your hair should grow back..perhaps very curly and grey like my daughter's but it should come back.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 7:41am
Julie,

It felt weird waiting for my hair to fall out.  I kept waiting for signs and the chemo nurses were right, your scalp will feel funny, sort of achy type of feeling a few days before.  I'd pull at my hair every day and then around day 15 when I pulled many strands fell out into my hand.  I didn't want it to fall out over several days so I had my husband shave my head when he came home from work.  My sons were older, but we made it fun, laughing while he was shaving my hair off.  Even though I had about an 1/8" left, the rest came out a few days later.  I remember rubbing my head in the shower and getting hair everywhere.

As far as a wig, I bought one prior to chemo.  I maybe wore it a couple of times during treatment, mainly if we went out socially.  I mostly stayed with scarves (I liked the soft cotton ones) and hats.  When I went back to work I eventually wore my wig again.  This was during the winter and it felt warmer on my head.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote issyaimee Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 8:19am
Hi there, 
12 days into my AC ( x 4 every 2 weeks) treatment a huge chunk of hair came out in my comb as I combed my conditioner through my long hair in the shower. It freaked me out so the next morning I asked my hairstylist if she could fit me in to cut it really short. Knowing my situation she of course got me in that day. I had had long hair all my life, and here I was at 45 getting it all chopped off. I felt a bit weepy driving to my appointment but gave myself a talking to and told myself to pull myself together. As Leslie started to cut my hair I felt fine we were laughing and joking about it. I had my hair cut in four bunches to donate for wigs. I ended up with a super cute pixie haircut and I loved it!!!! 4 days after my 2nd treatment it was going out all over my pillow at night, in the shower, on the collar of my coats and sweaters so I buzzed it then shaved the stubble. At first it was a shock and I hated what I saw in the mirror but the got used to it and became totally comfortable without my hair.
I have 2 wigs... a long one and a short one. I have never worn the long one and have worn the short one numerous times but find it really hot even though I live in Mass and its very cold. So I wear hats outside and take them off indoors and am comfortable with my bald head.
I started 12x weekly Taxol Feb 8th, I have my 8th this Friday and I fuzzy hair growing back! My eyebrows have thinned so have my eyelashes but I have not lost them completely so far.
Hang in there, its not forever and I have to say cutting in really short before it really started to come out helped me soooooo much with the transition to bald Tongue

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raehyg View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 9:15am
I started chemo the day before you and cut my hair super short just prior. I had very long hair that was very thick. My girlfriend cut it and it really looked nice....I was surprised I didn't cry. Getting my hair cut in the past has been traumatic. Now I am looking and I am realizing that I still have alot of hair on my head. I bought 2 wigs...one expensive and one cheap and a few scarves. It is weird waiting for your hair to come out and I too am pulling it everyday to see if it is. My scalp does hurt though.....it burns and feels like I have thumb tacs pushing on it. It seems no one mentioned that. Oh yes and itchy at the same time. Just a really weird sensation. I think by Easter I should be losing it also. I am not sure about what I will wear but wanted to have everything I needed prior. I am still debating whether or not to buzz the rest and think I will decide the latter part of the week. I am not too freaked out about losing it just grossed out about finding it everywhere and having to clean it up. Good luck to you.
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 9:23am
Hi!  My hair has just come out.  I have a few white wisps left.  I did get two wigs....a red-haired one (cut in a bob like my own style) and a brunette with blonde highlights cut in a hip, fun style.  I have  gray/white/blonde hair naturally.  I have worn the red-haired wig once and  had fun with it.  I am also wearing those little cotton close-to-the-head hats (three pleats) and then I tie a scarf around it....weave the scarf into a rosette and wear it to the side.  Girl at the Post Office yesterday told me how much she liked my "hat"....so that was a nice compliment.  It's actually fun to mess with.  In the house (I do live alone), I just go bald, but I think I would go bald inside my house no matter who was around.  I'm pretty comfortable with the way I look.  I remind myself of  Brad Pitt in that  movie where he ages backwards (when he's young, but old).....lol...Wink.  Gotta find the humor somewhere.

There are some good youtube videos showing you how to tie scarves and all.  I think I will be more of a scarf/hat wearer than a wig wearer, but it is nice to have the wigs if I want to look somewhat "normal".

My very best to you in dealing with your hair loss.

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 1:23pm
Hi Julie,

Very similar stories to everyone. I kept waiting and almost thinking - ha! not gonna lose MY hair! Day 15 like clockwork as everyone told me, head was achy/hurting and falling out in clumps. Not everyone says it hurts, but even the wind blowing my hair hurt. My hair sounds like yours- very thick and curly. I couldn't take it falling out in wads when I ran my hand through my hair. I hadn't done any fun prep or cutting it or dying it, etc and it was the slap in the face that I really had cancer. I did have fun with my hairdresesr cutting it- oh look- it's the 80's retro asymetrical look, oh look, a mohawk, etc and then she buzzed it short.

I had gotten a wig beforehand so was all set. I work with kids and many kids with autism who like things to be the same. So as not to freak out the kids I work with, I wore a wig all the time at work. If I didn't have kiddos in the office, off it came. I went au natural at home and usually ballcaps out. I did buy a soft cotton cap for sleeping because it seemed like my head was always cold at night. My own kids very quickly got used to the bald me and would do a double take if I walked in the door at the end of the day with my wig on.

It was funny because SO many people told me my hair would come back curly and didn't know what to say when I told them it was curly before! It came back a little darker than before, I think, but I had been highlighting it for years so who knows. What I do know is that it is waaaaayyyyy crazy curly now. Perm- can't do a thing with it- curly. I throw a little gel in it and then go and don't look at it. Everyone tells me it is cute but they don't have to live with it! It is not as thick as before but still seems to be getting thicker.

Believe that it WILL fall out with the A/C and plan in advance if you want to include the family in having some wacky fun with it. It is certainly a transition but everyone will get used to it quickly. I didn't lose my lashes and brows completely until almost the end of Taxol.

Good luck and remember, it WILL grow back and you WILL get through this!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 2:44pm
for me it started about 19 days after my first treatment   I had "prepared" for it by cutting my hair short ahead of the fallout.  I also died it red as I had always wanted to have red hair but was never brave enough to do it so why not...its coming out anyway.  Then the morning that it was coming out in clumps I had my hubby shave it.  We took pics before and after and cried together.  I bought lots of beautiful soft scarves and even found a couple of sources online that will send you a head cover for free.  Lots of colors to match lots of outfits...found many of them on sale so did not break the bank  I also had a few wigs.  Bought an expensive one that was made of real hair but hated it.  The American Cancer Society will give you a wig or two for free as well.  My favorite was from their catalog (tlc).  It is difficult to adjust to being bald for sure.  My kids are older so not as tough as little ones.  I was never afraid to show my baldness to my family and closest friends.   Cute hats are great too for something different.  I know it is a scary time not knowing what will happen.  Cry if you need to and allow yourself and your family time to mourn your hair.  Maybe even include them in the shaving if you decide to do that.  For me it was a way to have some control over the loss but we are all different..We are here for you while you transition into the beautiful world of baldness
Maggie
Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 9:40pm
Thanks guys.  Kids and I had a hair cutting party tonight.  My son who is 5 decided on his own he wanted his hair shaved.  He had beautiful blond hair.  He was insistent on shaving it so I decided tonight was the night I'd let them cut mine too.  Friday we all have off so maybe we will make it an outing to go get a wig also.  Steve, my husband, the dedicated researcher (he found this forum for me) showed me some information on cold caps, but I decided not to pursue it since I started treatment so soon after diagnosis.  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 10:07pm
Hey Julie -

I thought I would chime in here. One thing to check out are the baseball caps that have hair sewn into them. I bought a couple in preparation for my hair to fall out because I like to wear baseball caps anyhow and they really are great. They look pretty real, and if you don't want to wear a wig, but you want to have "hair" this is a good option. The Baseball cap really hides the "hairline" so it looks pretty real. 

Tin the end though, after preparing to lose my hair by buying all these things, my doctors switched my chemo regimen a couple days before I began chemo and I ended up not loosing my hair after all. 

Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HOC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2013 at 10:49pm
I started AC on March 7th and March 21st as I was getting ready for round 2 my hair started falling out.  It wasn't clumps, more like major thinning all over.  If I gathered it back like a pony tail and ran my hand down it there would be a whole handful of hair.  Every time.  No matter how many times I did it.  By Monday I was pretty sick of all the hair on my clothes so I had my 7 year old cut it to just about chin length (oh, I had long, thick, curly hair) with the intention of getting it shaved on Tuesday.  The stylist called in sick at the special shop I was going to, so Wed I had a neighbor come over and buzz it for me.  It had been hurting, pins and needles prickling, since the first day it started falling out, but was progressively getting worse!  I was hoping buzzing it off would help since cutting shorter seemed to help a bit, but it didn't.  Finally, yesterday (one week after it started) the prickly pain and itching started to subside.  I was finally able to sleep last night and today it's really only prickly on top where it's thickest and even that is way better.  I'm hoping by tomorrow I'll just have the itching and dryness.  I bought an expensive wig with the intention of wearing it every day in the beginning from the day I shaved my head.  Unfortunately, the pain was so bad I couldn't even put it on!  I've been alternating between a silk, pre-tied scarf, a cotton scarf, and a homemade knit hat that is very soft, not too tight, and very warm.  I tried the wig on this morning since the pain is so much better and it doesn't look as good as I remember from when I had hair.  I'm sure I'll still wear it on occasion when I go out to social events and probably events at the kids schools, but I actually prefer the scarves.  Before losing my hair I didn't think I'd even wear them.  :)  Oh, and I'm now 9 days from when it started falling out and still have LOTS of stubble on my head.  But I did have very thick hair before.  :)  The worst part about it for me is the cold.  I usually keep a scarf around for when I get too chilly.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 3:19pm
April first will be my 14th day, how appropriate.  My head has been very itchy and sometimes i have had a dull pain on my scalp.  Still not sure what I am going to do.  :)  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 4:16pm
Can I say itchy itchy itchy, lol. Today some of my hairs were sticking straight out...I realize these are the hairs coming out. Wondering what tomorrow will bring...day 14.
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 10:57pm
Dear all,

I am a volunteer patient advocate and have worked closely with many women with TNBC and everyone, including my daughter, who was on ACT lost their hair, initially.

Last week I met with an oncologist I trust who told me that some of her patients have had good experience with Penguin Cold Caps. As I never give medical advice I don't want to recommend these caps but wondered if anyone here had used them or had friends use them and what was the experience?


thanks,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote weekender09 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2013 at 11:43pm
Julie:

For me the Hair Loss was the hardest for me to think about.  One of the only times I cried was at the thought of losing my hair.  It seems silly now after 2 weeks of baldness.  By day 14 my hair was falling out in handfuls.  I have daughters 12 and 14.  We all went and shopped for a wig together before it started falling out.  Then on day 16 with hair falling out and head tingling and itching my mom and 14 year old cut off my long hair together.  They made a mullet and fauxhawk and other fun while they did it.  My boyfriend then shaved my head bald.  I was devastated for the first week but I know this is all worth it to Live.  

I have a wig that I never thought I would be without.  I wear it only for my professional meetings or if I feel the need to not have cancer define me on the outside.  I have learned to love headwrap scarves and the way they can be done differently.  I also have some of the beanie hats for sleeping as my head gets cold here in MN.  

Good luck and I look forward to your stories of success in your journey.  Handshake

Barb
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nana Mimi Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2013 at 11:18am
Hello,  I am at day 17 post first round of TC.  I had my hair cut in a pixie style a couple of days ago and I can't believe I never had the courage to do it before!  The day before I noticed a large amount of fall out and I could pull handfulls out at a time.  That was very upsetting but I eventually got over it when I realized I would not have to bother using a blowdryer for the rest of a long hot summer!  I did get a wig 'just in case' and a baseball cap with fringe that I think I will enjoy.  My 12 yr old grandson cried when my daughter told him I would be bald but he got over it.  I told my grand daughters (6&9) about seeing Nana with a great big Charlie Brown head and how they can have fun decorating it with tatoos and henna and help me try on lots of different scarfts, hats and bandanas!  My oldest grand daughter went throung a short time where she was pulling out her eyelashes and eyebrows so she was especially sensitive to my being bald.  To make her feel better I put her in charge of picking out some really cool movie star fake eye lashes!
 
Just as we all have to adjust to our diagnosis - you will come to terms with the hair loss.  Don't lose your mind over losing your hair!  It will come back as strong as beautiful as you! 
 
Smile - it makes everything seem better! 
 
Nana Mimi
65 yrs old. Dx 5/13. IDCIS. TNBC. Lumpectomy 1.1cm clean margins. SNB 0/3. Stage 1. Grade 2. 4/4 rnds TC. Rad X 33. Done!
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