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Topic: BEFORE REQUESTING ACCESS FOR PICTURE FORUM

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Sep 14, 2014 12:00AM - edited Sep 20, 2014 08:14PM by nowheregirl

nowheregirl wrote:

After having received a lot of people ask me for re-post this, I've finally decided to do so. I might be late but I just wanted to make sure where the original thread would be going before re-posting as I didn't want a lot of valuable responses in it to be removed. Anyway, I have talked with the Mods here so here we go.

------------------------------------------------

Hi there,

As some of you know, I am the founder/administrator of the Picture Forum where we share the information/advice/experience/pictures regarding our breast reconstruction surgery as well as the hair loss from chemo etc. It is a private online forum which I started several years ago when I was in the middle of treatment for my own BC and it is NOT part of BC.org in any way.

   

Obviously what we share on our forum is very personal and can be even intimate. In order to protect our privacy, our forum is password-protected and no one could even get the link without my approval. So anyone who wants to be part of us MUST ask me or Lilah who has been generously helping me as a forum moderator for access via PM (private message). Do NOT use this thread to ask for access. Your request has to be sent in PM to be reviewed.

   

However it does NOT mean you will be automatically granted access just because you ask for it. Our members are entitled to know who is looking at them. They should not be seen by those who are not legit or not willing to show who they really are. Thus anyone who is very new here or has not posted much will least likely be approved. We do not have definite requirement like how many posts are needed before request because it depends what you have said in your posts. I screen every applicant and decide who should be allowed based on their posts.

   

Please do not call us exclusive. We do this solely because we are responsible for our member's privacy and we have to keep our forum alive for those who will follow our path. Our forum is not a photo gallery. If people were only interested in looking at the pictures and didn't post at all, our forum could die at any time. So even if your request is ignored, please do not take offense. It only means that you have been added to the waiting list. You will be given access eventually as long as you continue with posting here on BC org so that we will learn enough about who you are from your posts. Do not expect me to ask you for information on yourself or your diagnosis so that I will know enough about you to give you access. It is pointless. As I said the above, the reason why you are asked to keep posting here is that every single member of our forum deserves to know who will be looking at them, not just me. Your request will be removed from our waiting list when I haven't seen you here for over a month but as long as you keep coming back and posting, your request can be granted no matter how long it has been since you asked.

   

One more thing - Please for whatever sake, do take the time and caution to read the instructions when you receive them in response to your request or you will waste your opportunity to be granted full access. I will not get back to you to tell you once again what I have already told you unless you ask me to. You have to do what you have been asked to do within a month after your account registration on our forum.

  

Thank you for your understanding.

  

Nowheregirl (former Timtam) @ Picture Forum Administrator/Founder

  

Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Sep 14, 2014 11:55AM - edited Sep 14, 2014 11:55AM by exbrnxgrl

nowheregirl,

Thank you for your dedication to maintaining the picture forum and your steadfast conviction about protecting member privacy. I suppose there will always be people who don't understand this and become upset with you, but you may never make those people happy. They also don't seem to understand that the pics forum is private and not part of bco. I haven't been on the pics forum in years but appreciated it greatly when I was learning about recon. Keep up the good work and don't worry too much about those who can't or won't read and understand what the picture forum is about.

PS: many thanks to lilah too.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Sep 14, 2014 03:47PM Lily55 wrote:

thank you, i found the picture forum incredibly important in my decision making and really appreciated how respectful it is, i was hoping to post photos of my journey but its been complicated by infection and problems......

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Sep 14, 2014 11:44PM Loriell wrote:

I'm coming up on my TE exchange in December. Perhaps you will consider adding me by then. I would be happy to share my journey as well. Pictures and all. With that said, I do realize this is a sensitive issue and you don't want any old Bozo lurking at your photos. I get that, I truly do. I've been reading and gathering information from this discussion board since my DX last October but I'm just not a person that posts a lot, I never will be. Not sure why the bases of access depends on the number of posts you've posted but I suppose you need some way to figure out who is looking at the page.

Good luck ladies! Happy trails..........

Invasive ductal , Stage 2a , 0/1 nodes, estrogen +, HER-, BRCA- Treatment- bilateral mastectomy, chemo four rounds every three weeks (TC), radiation, hormone therapy
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Sep 15, 2014 01:08AM nowheregirl wrote:

Loriell, you have already been added to the waiting list since you PM'd me. The main reason why it depends on how many posts you have posted if you are granted access or not is that it is the only way for us and other members on our forum to see who you really are. I do wish every single person we met on the internet was legit and we were able to give them 100% trust, but sadly it is not what happens in this cyber world. Even on the site like this that is designed for those with the disease that could be life-threatening, we have seen some sick people from now and then. In real world, you would be asked to have some kind of an interview if you asked for access to the private area. But I get quite a number of people asking for access. Could I ask every single one of them to come visit me in Japan (I am Japanese living in Japan in case you didn't know) and somehow broadcast our talk for other members to see?

  

Another reason why it is important for us to read your posts before giving you access is that we need people who would help us keep our forum alive. Like I said in my first post, our forum could be dead with very few old posts and photos if people were there to just read, not post. Who would want access if they knew they wouldn't get any responses? We have to know if you are the person who will help us run the forum by contributing your experience, opinions and hopefully photos before we invite you. 

  

With all these being said, it is not just about how many times you have posted here on BC.org. By reading your posts, we see a lot of things, like if you are willing to share yourself with others, if you are polite enough to get back to the person who has responded to you, if you can pay respect for others etc. So sometimes someone with 100 posts here could be denied and would be just added to the waiting list if it was like 98 posts out of their 100 posts were only found in the game section.

  

Thank you for your understanding.

  

Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Sep 19, 2014 09:02AM - edited Sep 19, 2014 09:08AM by Lilah

Thanks, Fumi!  Great to start a new thread.  I'll add/emphasize that if you are interested in joining, contact either Nowheregirl or me privately -- don't just ask here.  Thanks :)

I'll also add that it doesn't hurt to follow up after awhile with a nice PM if you don't hear back from us after a bit -- we are both very busy, we volunteer our time, and we are not immortals with superpowers (though we try to be ;) ).  We do this because we have been through what you've been through (one way or another) and we know what it meant to be able to share when it mattered.  Patience is a virtue, ladies.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Sep 20, 2014 02:54PM DeltaD wrote:

I am interested in joining the picture forum as I just had reconstruction done.

Dx 7/29/2013, IDC, 3cm, Stage IIIB, 4/16 nodes, ER-/PR-, HER2- Chemotherapy 9/5/2013 AC + T (Taxol) Surgery 1/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/25/2014 Breast, Lymph nodes Surgery 9/16/2014 Reconstruction (left); Reconstruction (right)
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Sep 20, 2014 03:06PM exbrnxgrl wrote:

deltad,

Please, please read thoroughly through the posts on this thread, particularly lilah's post, dated 9/19 and of course the initial topic post by nowheregirl. You can not request access by posting on this thread.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Sep 20, 2014 03:40PM Andrea623 wrote:

nowheregirl, I didn't know you were Japanese. I'm half, my mother is Japanese! Thank you for allowing me to join the forum. The women there are incredibly generous in sharing their journeys.

"Kindness to animals builds a better world for all of us." - Best Friends Animal Society Dx 8/16/2012, DCIS, 4cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-, HER2+ Surgery 9/5/2012 Lymph node removal: Sentinel; Mastectomy Dx 9/13/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2- Radiation Therapy 11/6/2012 Breast Surgery 7/10/2013 Reconstruction (left); Reconstruction (right) Surgery 1/22/2014 Reconstruction (right) Surgery 9/9/2014 Reconstruction (left); Reconstruction (right) Surgery 6/15/2015 Reconstruction (right): DIEP flap Surgery
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Sep 21, 2014 12:09AM 2nd_time_around wrote:

Nowheregirl and Lilah, thank you for volunteering your time and efforts to help women through our journeys. You're blessings to many! Thank you for this new thread, hopefully you got the point across that the picture forum (while wonderful) is only a part of your busy lives and will cut down on a bit of confusion. 

**AKA 2TA ** Any day I wake up, it's a good day. ~ ~ "You don't know strength until strength is the only choice you have." (Author unknown)..... Yes, this is my 2nd occurrence, not recurrence; 1st in 1996, 2nd in 2012, bilateral recon in 2012
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Sep 21, 2014 01:04AM Blessings2011 wrote:

Nowheregirl (and Lilah) - the Picture Forum has been an absolute Godsend for SO many women! Thank you so much for creating it, and for maintaining it.

This post was a great explanation of what the site is all about, and why the rules for access are what they are.

Let's keep this thread bumped up!!!

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/22/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole)
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Sep 21, 2014 01:07PM whippetmom wrote:

bumping

DISCLAIMER! Please read my biography under my personal profile. I am not a physician or medical professional. The information provided is my own personal opinion. You must discuss every aspect of your reconstruction with your plastic surgeon. Dx 10/15/2008, IDC, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 22, 2014 02:50AM Lilah wrote:

Thanks ladies!  

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Sep 22, 2014 11:31AM - edited Sep 22, 2014 11:35AM by nowheregirl

Not fully sure but hasn't this thread been pinned on the top? Now the last reply (Lilah's one) was posted 9 hours ago and there are a lot more threads in this section that have newer replies but this is still on the top (3rd top to be exact), which means it's pinned and we don't have to bump this up?

Thanks for helping us anyway. :D

  

p.s. Andrea, yes I indeed am Japanese. Well, maybe not 'cause I'm nowhere near as good to use the chopsticks as other people do here. They irritates the hell outta me at times. :P

Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Sep 22, 2014 12:23PM 2nd_time_around wrote:

nowheregirl, good point that the thread stays on top. Maybe the Mods feel it's so important (especially for newbies) they figured a way to keep it highly visible so we won't have to constantly bump? 

**AKA 2TA ** Any day I wake up, it's a good day. ~ ~ "You don't know strength until strength is the only choice you have." (Author unknown)..... Yes, this is my 2nd occurrence, not recurrence; 1st in 1996, 2nd in 2012, bilateral recon in 2012
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Sep 22, 2014 07:45PM KEC wrote:

I am in the process of choosing implants and am looking for advice and some before and after photos. Please allow me access.  

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Sep 22, 2014 08:55PM Janett2014 wrote:

Read the first post in this thread. You need to PM nowheregirl or lilah. 

Diagnosed age 60 with IDC in 2014. Stage 1A, Grade 2, 0/10 nodes, ER+/PR+, HER2- Cancer on both sides, bilateral mastectomy, reconstruction with silicone implants, Oncotype 16, Arimidex (Anastrozole) 5 years. There are more details in my biography.
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Sep 25, 2014 02:07AM whippetmom wrote:

PLEASE READ THE ENTIRE HEADER TO THIS THREAD!!!  PLEASE DO NOT POST HERE REQUESTING ACCESS TO THE PICTURE FORUM.

DISCLAIMER! Please read my biography under my personal profile. I am not a physician or medical professional. The information provided is my own personal opinion. You must discuss every aspect of your reconstruction with your plastic surgeon. Dx 10/15/2008, IDC, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 30, 2014 01:15AM taloula wrote:

Just found you ...I am 23 years out . Breast cancer having lat surgery in January..bi lateral..Also reduction and lift on the left....has anyone had this done really would like to hear and see result photo before after I've had a modified radical chemo and radiation. ..Very happy to have found this...

..

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Sep 30, 2014 01:21AM AZ85048 wrote:

taloula - PLEASE read the header for this thread that nowheregirl wrote (above).  It will explain everything.  You cannot gain access to the picture forum by simply posting on this thread.  Good luck to you!

DCIS, LCIS, and ALH (also a DES daughter) 'Oh, my friend, it's not what they take away from you that counts - it's what you do with what you have left'. ~Hubert Humphrey Dx 7/12/2013, DCIS Surgery 7/26/2013 Lumpectomy: Left Dx 8/2/2013, LCIS Surgery 8/20/2013 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/25/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/23/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 1/7/2015 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo
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Sep 30, 2014 10:48PM Bellz wrote:

Hi, 

Timtam it has been a few years since I have been on. I was just thinking tomorrow begins Breast Cancer awareness month. At one time I had the info for the password to the picture forum...and in fact posted my very own pictures. I hope things are still going well and maybe what I posted has helped others. 

Bellz Dx 5/21/2009, DCIS, Stage 0, Grade 3, 0/0 nodes, ER-/PR-, HER2+
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Oct 2, 2014 08:38PM taloula wrote:

Thank you for your help ...not too computer savvy ...I'm  very nervous about my surgery...your forums have been very helpful...There has been so many changes in the different surgeries since 1992..my mx..wow .I will try to send requests properly...to the right place....

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Oct 12, 2014 09:06PM nowheregirl wrote:

If your request is granted and you get a PM from me with the instructions, please do take the time to read it carefully. I only ask 2 questions and you will not get your account validated unless you send me your answers. If you leave the questions unanswered more than 30 days from your account registration, your account will be removed. Believe it or not, a number of people don't bother getting back to me and end up wasting their opportunity to join us on the forum by not answering those 2 easiest questions.

Dx 7/7/2005, IDC, Right, 3cm, Stage IIB, Grade 1, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Oct 12, 2014 09:19PM 2nd_time_around wrote:

nowheregirl, good point. Maybe you could include the info in topic/header box? Again, thank you for all the time and effort you and Lilah put into the picture forum!

**AKA 2TA ** Any day I wake up, it's a good day. ~ ~ "You don't know strength until strength is the only choice you have." (Author unknown)..... Yes, this is my 2nd occurrence, not recurrence; 1st in 1996, 2nd in 2012, bilateral recon in 2012
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Oct 13, 2014 10:58PM - edited Oct 13, 2014 11:00PM by appleb


hi would like to join the form. had reconstruction three years ago all went bad.would like to understand what went wrong.

deborah finnell
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Oct 13, 2014 11:05PM exbrnxgrl wrote:

Appleb,

Please, please read the original post on this thread by nowheregirl to find out what you need to do to request access to the picture forum. You can not request access by posting on this thread.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 14, 2014 02:08AM whippetmom wrote:

Do you know, I think it would be best if this was a HEADER ONLY thread, closed to posting.  If people could not post, they would be forced to read the header. 

DISCLAIMER! Please read my biography under my personal profile. I am not a physician or medical professional. The information provided is my own personal opinion. You must discuss every aspect of your reconstruction with your plastic surgeon. Dx 10/15/2008, IDC, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Oct 14, 2014 04:19AM Tomboy wrote:

Good point, whippetmom.

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Oct 14, 2014 08:07AM exbrnxgrl wrote:

Excellent idea!

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 14, 2014 05:50PM - edited Oct 14, 2014 05:51PM by Blessings2011

Did anyone PM the Mods with this excellent suggestion? Happy

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/22/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole)
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Oct 14, 2014 06:02PM AZ85048 wrote:

We probably all just assumed they would read it here... Loopy  I'll send a PM right now and see what happens.

DCIS, LCIS, and ALH (also a DES daughter) 'Oh, my friend, it's not what they take away from you that counts - it's what you do with what you have left'. ~Hubert Humphrey Dx 7/12/2013, DCIS Surgery 7/26/2013 Lumpectomy: Left Dx 8/2/2013, LCIS Surgery 8/20/2013 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/25/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/23/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 1/7/2015 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo

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