Hair Hair Hair - Another question
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Yep, I was told lumpectomy, rads and done! Easy peasy, right? (not saying it is easy, but that is how it was put to me.) Here I am 7 months, chemo and three surgeries later with two (possibly 3) surgeries left to go. I think God knew I needed just that little bit of information at first to get me moving forward. LOL
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I would've preferred they scare me to death with the worst case scenario then told me "surprise! Only lumpectomy with rads!" Lol Truthfully, if the onc would've said "if it comes back in same breast after chemo and rads, there will be no reconstruction", that would've changed it all. I need to know the recurrence possibility in the same breast after all the treatments. I'll ask that on Friday. Thanks for your insight! Will let you know how things go - I'm learning to expect the unexpected on this journey!
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Not sure if telling you upfront would have been any easier. After my biopsy I didn't anyone to tell me I needed an MX and chemo. I wasn't even that disappointed when the BMX was strongly advised due to the LCIS in the "good" breast. My "good" news was my Rad MO was giving me a pass on rads in spite of the size of my tumor.
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Hey guys! Been a while since I have been on here. Life has been crazy, which I am thankful for.
Yurmani did you mean that if you have a lumpectomy, chemo, and radiation if cancer comes back in that breast you cannot have a mastectomy and reconstruction?
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BosumBlues your personal risk or recurrance isn't only based on staging. Type of breast cancer, Age of diagnosis, Menopausal status, weight, family history, BRCA status, treatment choices, etc. are only some other things that factor into this. Stage doesn't take in any of those factors.
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Also note that the stage stats you see on sites like the American Cancer Society includes everyone… those who did all the treatment, those who did partial treatment and those who did none at all. For most of us our personal stats are usually better.
In time I think you will see a change. Survival stats will be based on more personalized information and not just node involvement, what size, grade etc your tumor was. I look at stage is something to guide your treatment and less about your survival stats.
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Interesting Lago. That's just what my MO told me. Stage was something to guide treatment. And that's how I got to the tumor board & did a 2nd chemo after surgery & before rads.
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Lago I agree that in the future you'll see prognosis on a more individual basis rather than an overall statistic including those with higher/lower grade/size etc than our own. In my situation the surgeon, I feel, ignored what I told her about the tumor appearing over a 2 month period and that it certainly seemed aggressive based on that alone. She more or less brushed it off and said you'll have lumpectomy followed by rads in 4 weeks for 30 treatments then tamoxifen for 5 years. When the pathology came back a grade 3 with comedonecrosis she brightly stated "no lymph node involvement! but we're sending for the oncotype dx". Still no mention of the possibility of chemo! When oncotype came back a 36...the nurse told me chemo is definitely needed since 25% recurrence rate without it. I guess hindsight is 20/20. It went from a 1.5cm stage 1 tumor-like a wart or skin tag the way the surgeon acted to an aggressive, grade 3 tumor that has to have chemo, rads and tamoxifen! On the flip side my hem/onc dr is wonderful! Takes all the time I need to answer questions. I think the breast cancer team needs a liason or navigator where I am going. Would make things easier and things would make more sense as you go along if someone was there to guide patients through the process. Just my opinion! Glad there's groups like this to help each other along!
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Yurmani I too saw my and had my surgery before I met with my MO. Granted knowing I was HER2+ we all knew I was getting chemo. My BS told me I would need rads due to tumor size and most likely micromets in nodes. Ended up no micromets and I was in a grey area for rads. I got a pass on rads. It really isn't up to the BS to know chemo/rads. Also even my radiologist told me that things could change once they had the final path. Size of tumor could be different etc. They need to tell women this. Most of us believe that the Mammo, US, MRI tell us everything but they don't always get the complete picture. Our technology isn't perfect.
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Here's the latest pic just taken yesterday. I'm 12 weeks PFC. I have a little bit of those Toppik hair fibers in that I mentioned in my last post, so they're filling in the areas where you can see my scalp, but it's definitely taken off in the last couple weeks and seems to be coming in thicker. I just started the rogaine a couple days ago, so I can't comment on that yet, but I've also been using Latisse about 3-4 times a week for the last month or so and I can definitely tell a big difference. I'd highly recommend it. So far the color and texture is the same as before. I actually went out today without my hat for the very first time. I was extremely self conscience, but it was also liberating!
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Wow, looks great Allydp! My fuzzies are going crazy and I can see darker hair coming in. I'm 5 weeks PFC
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Looking good ladies!
I went out today without my wig for the first time today. I thought I was ready, but I noticed some stares and felt self-conscious. Guess I am not ready yet.
Patience.
Dee
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Dee - just give them a discrete bow & a smile or nod your head. Their problem - not yours.
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Allydp - you look great!
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love, love, love the pics!!!!! Ally-NICE!!!
On statistics. IBC has the most horrifying ones. But my MO and BS said just what Lago did. Those are based on so many variables that they are not completely accurate for individualized use. Plus the published statistics are old (in medical terms) they need time to collect data for 5 years and then publish it. Who knows what new drugs can come along in that time to decrease recurrence. In the past being HER2+ had an extremely poor prognosis. But now with target therapies around that has changed dramatically!!
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For Kittykat and those looking for help with growing hair, I would like to suggest using BioSil liquid silica. I have been using it for a year and half now and have, honestly, the best hair I have had in years (my avatar was taken two years ago when I had dry, damaged hair). Now, it's thick and shiny and grows like mad. BioSil is simple to take. I just put six drops in a small amount of juice each morning and use the juice to swallow my other morning vitamins and prescriptions. It doesn't taste good, so needs a strong tasting juice like orange or mango to mask the taste.
I order it on Amazon from whoever offers it at the best price. You do have to take it for a long time before seeing the results because it takes time to act on the hair follicles and for the hair to grow. It's not a quick fix. A clinical trial I read said it takes about eight months to really see results in hair growth, and when you consider that hair only grows half an inch a month, that makes sense. Eight months equals four inches.
I just went to my primary doctor today for a check up and she was amazed by how healthy my hair looks. She couldn't stop remarking on it, so I told her about the BioSil. She wrote it down and is going to be recommending it to others. I'd told her I was taking it last year, but now that she has seen the results, she's a believer.
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Hortense - I see they also have the BioSil in pill form, is the liquid better?
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Allydp, thanks for posting your picture - I'm sitting here, mourning my hair. My sweet lover just buzzed it off a few hours ago. I had my first AC infusion a little over 2 weeks ago, and right on time, I was pulling fistfuls out this morning. I am still in shock over how it looks, even though he did a good job.
Now I'm searching for a head covering, and all the hats I have around me are for guys...sigh.
its all temporary, right?
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hugs star. Yes it's temporary. Hair will grow. Mine is over an inch now. Good luck to you
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Thanks, Lorbgoo... I think I want a cowboy hat.
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And another thing...now with no hair, I look even worse when I frown and cry.
If I smile, I at least appear to be owning this and somewhat confident.
Shoot, lots of guys go bald and deal with it just fine.
I gotta grow up and be glad I'm not dead yet.
and hide all the mirrors.
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It IS indeed temporary. But still no fun as we go through it. I thought hats looked horrid on me, and I refused to wear a wig because I felt they all looked like wigs. I decided to just "go with it," yet I could not manage to be bald in public. I had a collection of scarves that I tied different ways. Today, a woman could go bald and some would think it was just a fashion statement. Not many do it, but I'd think about it if I ever had to face that challenge again.
I didn't think that being bald would bother me much. But, when I was at the "pulling out handfuls" of hair (and I had LONG hair), I went on my lunch hour and had it shaved (I'd developed two bald spots that morning anyway). I had to turn away and not watch it happen. I'd brought in a hat to be ready, asked them to turn my chair away from the mirror (afraid I'd peek, I guess), slipped on my hat and did not look until I was home alone that evening. I ended up writing a non-fiction report on how important our hair can be when I went back to school last year.
Oddly, I moved my bandages and peeked just as soon as I woke up from my mastectomy, and didn't really feel as bad as I did about my hair. Those feelings certainly changed later, since the hair is temporary but the missing breast wasn't. But, today, I have long thick locks again (at age 55!). And, if encouraged a bit with "curl" products - I still have some of the curl I had when it first grew back in (I had a bit of body or wave beforehand, but was never curly).
I once saw a bald woman with a scarf on in the grocery store. She was in pretty rough looking shape as far as her health. So I said, quietly "I used to have that hairstyle." I'm also so glib about everything, but I forget not everyone is like me. At first she didn't understand and her eyes flashed in anger as she was about to say "I have cancer!" But then I saw the understanding come over her and she seemed to nearly weep that someone (who had regrown a mane of long, thick, shiny hair) understood what she was going through.
Best to you. YOU are not your hair.
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I blogged the day I shaved my head. I made a video in private in my bathroom (possibly alcohol induced!) and posted the video to my blog. Here's the post I made that day. http://gardenofeagan.blogspot.com/2014/05/kickin-a.html You can see I have dark chestnut colored hair. That was my natural color. Now I'm silver. SILVER!! I just watched this video for the first time since I posted it. Wow…hard for me to watch… My hair is silver and I no longer have breasts. …just….wow…its a different person in that video.
I never wore a wig. I had purchased several hats ahead of time but I discovered I have a TINY head and everything was too big for me. I did get a free scarf from Hope Scarves that was BEAUTIFUL! (awesome organization. Contact them!) that if I was going to wear something it was my first choice. But really, with summer and chemo induced hot flashes I was just too hot to wear anything on my head. I was cue-ball smooth all summer long. I got used to it. Sometimes I would catch people staring and ask "Wanna touch it?" Which would freak them out and they'd go away. LOL We're used to our family getting started at (we have 5 kids with Down syndrome so I guess we're interesting.) and my baldness just added to the stares.
I've always been a bit of a tomboy. When I knew I was going to lose my hair I got my ears pierced so I'd look a bit more feminine. I started dressing slightly more girly and wearing make up more often. My hair is not quite an inch long now and I feel prettier now than I did before chemo. Very strange.
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Awww, thanks ladies, you make me feel better about all this...and noonrider, you are talented with those clippers, you made it look easy! I think I'll pass on the wig too, rather spend my money on scarves and a few good hats. Done with the tears. Thank you all for being here.
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Thank you so very much, ladies. Today was day 2 out in public rocking the short hair. I'm very self-conscious, but I also feel empowered.
BosumBlues - thank you for your kind words. I really appreciate them.
Starlover - thanks. And yes, totally temporary. If you're still looking for cute hats, check out Suburban Turban. They have a bunch of cute options.
Noonrider - your video brought tears to my eyes. Thank you for sharing. I also made a little video. I wanted to try and make the day fun and memorable, so my husband and I invited our closest friends over for what we called a Buzz Bash where we both shaved our heads. I have great memories of that day, but it still makes me a little sad to watch the video.
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starlover www.sassyhead.com
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Allydp, you are a beauty! Rock that pixie, cutie!MsP
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Alecia, what a great video!! Do you mind if I share it? I wish I had the forethought to make a decent video. LOL You are beautiful no matter how much hair you do or don't have.
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Ally and Noon - Thank you for sharing those very special videos!!
I keep watching for any signs of new hair here, too. So far just the sparse fuzz =/
So happy to see those of you with lovely locks returning! It's encouraging!
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MsPharoah and AnotherNYCG - thank you both so much!
Noonrider, I would be honored if you shared it. Thank you!
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