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Topic: LCIS blog- preventative bi-lateral mastectomy

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Nov 30, 2010 04:33PM

ArleneMarie wrote:

Hello to anyone,

I started a blog to chronicle my journey from being diagnosed with LCIS and my upcoming preventative bi-lateral mastectomy if anyone is interested in following along with me.  It helps for me to write about this process and I may be in a position to answer any questions you may have if you are considering this option.  Everyone has different opinions on what road to take.  This is my personal journey.  Please feel free to comment or email me and I will be straight forward with you.  My blog is at:

www.arleneflick.blogspot.com

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Nov 30, 2010 11:09PM Chocolaterocks wrote:

Hi Arlene Marie,

I really enjoyed your blog and would really like to follow you. I wish you the best as I am behind you by 2 months......I admire your courage. Keep writing and I will keep reading. thanks.

Dx 1/13/2011, ILC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Nov 30, 2010 11:17PM ArleneMarie wrote:

I am so glad that I can be of some help to you while I go through this.  Please do not ever hesitate to ask me anything as I will be as forthcoming as possible.  I will try my best to also add some humor to this as well :)

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Mar 26, 2011 05:36PM ArleneMarie wrote:

After three months, I am finally finished with the mastectomy, reconstruction and now the exchange.  I placed my email on the blog in case anyone ever wants to email me.  I can give you my phone number if you would like to personally ask me questions.  It was and is a big decision so I hope the blog helps you in your decision but I am always available if you ever need to talk to someone who went through this.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Mar 26, 2011 11:31PM leaf wrote:

Congrats on getting through this and your willingness to share your experience!  Wishing you all the best.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 27, 2011 11:33AM Doreenanne wrote:

Hi Arlene:  I will be having my PBM on 4/18/11, due to LCIS and ALH. I Had a breast reduction 9/10 , pathology report showed ALH.  Had mri 12/10 - had to have 2 biopsies. showed LCIS in the 2 spots.   I like you can not watch and wait.  I'm very nervous about the surgery, but I know for me that i have to do it.  I know I will be relieved once done that i dont have to worry about going for mamo, mri, tamoxifen. Its nice to get in touch with women who have gone throught what i am going through now.

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Mar 28, 2011 07:22PM ArleneMarie wrote:

Doreen,

Aren't you glad they found the LCIS now???  My sister, ironically, was diagnosed with DCIS two weeks before my mastectomy and after she had her mastectomy in January, they found LCIS in the tissue of the other breast.  I just found out today she now has to get chemo.  Crap!  I think the PBMX is still the best way to go if you have been diagnosed with LCIS but, then again, everyone has different perspectives.  Good luck and seriously, don't hesitiate to email or ask for my phone number if you would like to talk about what to expect. 

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Mar 31, 2011 11:24AM ArleneMarie wrote:

Please let me revise.  My sister had DCIS and IDC which is why chemo is recommended.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 5, 2011 03:23PM ArleneMarie wrote:

I am so happy to say that a few women have contacted me and have asked me questions via email or telephone.  Seriously, I would be more than happy to answer any questions regarding the preventattive mastectomy and the process of healing.  Today will be almost five months since my mastectomy and I so happy to report that, not only do my boobs look great, but I am exercising three times (sometimes four) days a week!

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 18, 2011 09:31AM cathwarner wrote:

Hi,

I have just been diagnosed with LCIS i am very worried about it considering a preventative bi-lateral mastectomy myself cancer is an awful thought don t know if I can just have mammographs and go through the waiting game of will it won't it.

may discuss this with my GP what do others think

Cath

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May 18, 2011 03:59PM awb wrote:

Cath---I was diagnosed with LCIS almost 8 years ago and I also have family history of bc (momhad ILC). I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months; I took tamoxifen for 5 years and have been taking evista for over 2 years now for further prevention. It's not the choice for everybody, but it works for me. That's the thing--it is a very personal decision and has to be right for YOU. PM me if you'd like to talk more.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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May 18, 2011 04:02PM - edited May 18, 2011 04:12PM by leaf

Welcome to the LCIS forum!

Its a very, very personal decision.  No matter how many LCIS women on this site choose watchful waiting, watchful waiting with antihormonals, or preventative bilateral mastectomies, that doesn't give you a clue as to what is best for you.

As long as you've had a surgical excision (I think most breast surgeons recommend a surgical excision after LCIS is found on a core biopsy in most cases), then you have plenty of time to decide.

My core biopsy showed classic LCIS in Dec 2005, and I had my surgical excision in Jan 2006.  I thought I'd be on a every 6 month regimen of imaging forever, but that is not the case.  At my place, they routinely do a 3 month or 6 month imaging followup even after a totally Boringly Benign outcome to see if things have changed.  I had 2 more biopsies in Feb 2007 - both nothing worse than more classic LCIS.  Since then, I've had annual mammograms, and twice-a-year clinical exams, and that's it.  That's what the NCCN recommends. http://nccn.com/patient-guidelines.html

If you have pleomorphic LCIS, then this is thought to be more aggressive, though there are no clear guidelines, but some people choose a more aggressive approach.  (Hopefully you have a written copy of your pathology report.)

Since LCIS is an unusual diagnosis, many of my doctors didn't know what it was.

I started out my journey with trying to find out what my risk was.  This is a very complex area.  My oncologist gave me a 30%lifetime risk, and my genetics counselor gave me a 40% lifetime risk.  (I have a weak family history, with 2 maternal aunts, 1 paternal grandmother, all postmenopausal, and 1 maternal cousin, premenopausal.)

My GP, actually, though, was helpful because he was the first person to confirm that prediction of who will get breast cancer (for any single woman) is, at best, in its infancy.  One academic  paper said that the Gail model, which is the most widely studied breast cancer risk model, is 'better than the toss of a coin, but not by much.'  The Gail model is used for women without a personal history of breast cancer or DCIS or LCIS.  So it has a lot more data behind it than we will ever have for LCIS.

There is the Chuba study which looked at LCIS women in the last 25 years or so. In the Chuba study jco.ascopubs.org/content/23/24/5534.full.pdf, the women who got LCIS in their 60s actually had the highest rate of breast cancer: a cumulative 24.9% 25 years after diagnosis, which ends up being about 1% per year on average.  In contrast, the women who were diagnosed with LCIS at age <40 had a cumulative 8.3% incidence of breast cancer 25 years after diagnosis, which averages out to about 0.3% per year.  This 'average' number is misleading, because older women had an increased risk of breast cancer, analagous to 'normal' women who also have an increased risk of breast cancer as they age. Now, most of the women <40 years old at diagnosis have a lot longer to live than the women who were diagnosed at age 60, but we don't have data longer than 25 years.

Its a very individual choice, because a lot is not known, everyone has a different family history, everyone has different feelings on the risks of breast cancer, what bilateral mastectomies would mean to them emotionally, how they feel about reconstruction and risks of surgery (if any), the risks of antihormonals.  

Remember, most breast cancer is quite slow growing: most breast cancer has been in the breast for some 5-10 years before it can be detected by ANY means.  So there is time to decide (I'd say at least if you have had a surgical excision.) 

Some women who get a diagnosis of LCIS on a core biopsy opt not to get surgically excised.  This is a valid choice, but about 20% of those women will eventually find they had DCIS or invasive breast cancer near the LCIS site, so they need to realize this risk they are taking.  That's why many breast surgeons recommend surgical excision, so they have a better chance of  finding the 'something worse' - i.e. DCIS or invasive in this about 20% of patients who have LCIS on their core biopsy (and nothing worse.)  

I would try to examine all your options thoroughly - the pros and cons of each and every choice.  You can look up some of the risks in the surgical and reconstruction forums, and on the antihormonal forums.  But do know that most people who have NO problems with a treatment course do not continue to post on these forums; the people who have problems are very much over-represented.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 19, 2011 08:00AM DocBabs wrote:

I was diagnosed with LCIS almost 3 years ago and it was suggested to me that I do high risk surveillence which sounded reasonable to me. Morre than one MD told me hat this was not a cancer and that it may or may not be a marker for a future cancer,,,,,long down the road. All agreed that it put in the high risk catagory which basically meant that I'd be seen more frequently than the average woman.All MDs felt that PBX was completely overkill.Well, here I sit today,6 days post bilateral mastectomy.Despite having a negative mammo 6 months ago and a negative MRI in January, I ended up with not only my original ALH and LCIS but ADH,DCIS and Invasive Ductal Carcinoma.All of this came about due to a small lesion that I felt in my r breast which,BTW, turned out to be nothing  but it was then that the radiologist saw somwthing else in another portion of the same breast.I'm still left wondering what was the surveillence doing if nothing showed up and when something did it was already at the invasive stage. Ii will say that I just got my finial path report yesterday and ther sentinal node was negative but the the amount of terror that filled me till I had the surgery was overwhelming.In hindsite, had I been given the choice of PBMX I would have taken it and I do not say these words lightly.Careful consideration needs to be given to each option.

Barbara

DocBabs Dx 4/28/2011, IDC, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/13/2011 Lymph node removal: Right; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/13/2011 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/15/2011 Aromasin (exemestane)
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May 19, 2011 09:12AM Doreenanne wrote:

DocBabs:  I'm glad to hear you are doing well.  We have written to each other before. We go to the same dr.  I had my surgery done 4/18.  Last week I started to feel more like myself. I'm happy to hear that there was nothing in the sentinal node.  It is unbelievable that mri and mamo was clear and that radiologist saw something when you were having what you felt checked out.  I hope you have peace of mind now. I know I do.

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May 19, 2011 10:56AM ArleneMarie wrote:

Doreen,

You are just in the beginning of the reconstruction so hang in there.  It's a bit of a journey but, like I said previously, I am pretty much back to doing everything I did prior to the mastectomy PLUS I just crossed off the worry of breast cancer off my list. 

Barbara: thanks for your input.  I feel the same way..especially since my sister is only on her second chemo treatment out of 6.  It is miserable to watch her in so much discomfort but she doesn't have a choice (like most women diagnosed with BC).  That is why LCIS is so difficult.  We DO have a choice which is why it is so important to read up and talk to oncologists and plastic surgeons regarding your own risk and what is best for you.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 26, 2011 11:28AM Doreenanne wrote:

ArleneMarie:  Did you have a nipple sparing PBM or did you have nipple removed?  If you did have nipple removed, did your PS make you new ones?  Did you have the new ones done when implants were put in or at a later time? 

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May 26, 2011 12:48PM ArleneMarie wrote:

Doreen,

I had a nipple sparing mastectomy and it's funny but I can't feel them but they get "erect" like before.  I lost a tiny bit of coloring in the areola but otherwise, they look great!

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 27, 2011 09:52PM rehm046 wrote:

I was dx.'ed with LCIS six years ago.  Then another "spot" again about a year later-same breast.  I was under close surveillance and was seen by my BS every six months, had multiple needle biopsys and MRI's (alternating with 6 month mammo's).  I had about 4 "clean years" with no findings.  This past April, I found a lump and my BS found two more.  I had a mammo and US and then was suppossed to have an MRI and then make a decision.  Long story short, a needle biopsy was ordered before the MRI-for a mass in the other breast and then, of course, I was not eligible for the MRI.  Enter a NEW BS...she went through my history, my family history, the fact that I had dense breast-which my previous BS had said over and over-but I didn't realize fully what that meant.  I had been asking him about the choice of a PBMX and he kept insisting "one step at a time"  I trusted him.  My new  BS said, of course we can continue with close monitoring, but you have about a 37% chance of BS in the next 5 years and 70% in the next 10 (I'm 51).

 No question for me.  I'm opting for the PBMX with reconstruction.  I don't want to go through chemo and radiation-I've had several close friends go through it in the last two years.

 Obviously, this is a very personal choice-and there are those that think this is a very aggressive approach.  I'm just about 2+ weeks away from the surgery.  Have had all my pre-op appts, and reamain convinced that FOR ME, this is the right decision.  I'm not thinking it will be easy, but I will be so relieved, after 6 years of "waiting for the other shoe to drop" to have some comfort in knowing I've done what I can do.

 Again, this is a very personal decision, and I know it's not the right one for everyone.  I'm more than happy to have PM discussions with anyone about how I made this decision.

  Pat

Pat Dx 6/18/2011, DCIS, Stage I, Grade 1, 0/0 nodes
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May 27, 2011 10:44PM ArleneMarie wrote:

Hey there Pat,

So do you have to do any chemo at all?  I didn't understand if they found anything.  I will never ever regret my decision.  Whew...one less worry about ever contacting breast cancer.  You will be pleased to know that one woman recently wrote to me and she didn't want to talk...only email me.  I amswered a lot of questions as she was deciding whether or not to proceed with the BPMX.  She went ahead and is in the process of expansion.  Three weeks in and she is pleased with the way they look and is even exercising!  She is so excited that it wasn't as painful as she thought it was going to be.  The way I look at it is that we are healthy to go through the process of BPMX and reconstruction as compared to those warriors that have to deal with either chemo or radiation.  It is a preventative blessing in disguise Laughing.  Please keep us updated and if you need a complete run down on the surgery and recouperation, read my blog or PM me.  I am so excited for you for making such a strong decision.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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May 28, 2011 10:10AM - edited May 28, 2011 10:15AM by leaf

Hi Pat!  It sounds like you carefully looked at all your options and made the best decision for you.  That's what I would hope for any (at least classic LCIS) patient would do. 

It sounds like you have made this decision not as a quick knee jerk reaction, but have carefully looked at all your options-and even tried monitoring for many years and found that was not for you.   I admire your attitude and approach, and your intense respect for others' choices, whether or not they are the ones you chose.

I hope you will keep us informed about how it goes for you.  It must be so good to have made this decision, and have the support and of so many women who have gone through this 'in your pocket' if you need it.  Thank you so much ArleneMarie, and all these other women who have chosen a BPM to share your support and information.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 2, 2011 05:20PM ArleneMarie wrote:

Thanks "Leaf".  It's always nice to have input from those that have LCIS that chose preventative mastectomies and those that did not.  I appreciate all of your input :)

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Jun 3, 2011 07:35PM Mykidsmom wrote:

Hugs to all my fellow sisters and friends dealing w/ the dx of LCIS. I am another that chose to remove my breasts and move on. It has been two years since my implants and I hardly ever get on here or think about the BC that I don't have. It is a tough place to be, but at least we have choices. I wish you all the best as you decide what works best for you. - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Jul 6, 2011 08:25AM ArleneMarie wrote:

After final clearance from my PS, I was given the option of having fat grafting to make the upper pole look better.  This means taking fat from other parts of my body to fill in the area.  I am thinking "go for it" although I heard the lipo is pretty painful.  Anyone have this done?

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Jul 6, 2011 08:34PM Mykidsmom wrote:

Arlene - You should PM Whippetmom, she did the fat grafting. Best wishes!! - Jean

Prophylactic Bilateral Mastectomy w/ Tissue Expanders - 12/08 Exchange 04/09 Dx 8/25/2008, LCIS, Stage 0
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Jul 10, 2011 09:44AM ArleneMarie wrote:

I will Jean.  Thank you soooo much.  I like to know what I am walking into which I why I wrote the blog so that others could experience a reconstructive mastectomy via blogging.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Jul 16, 2011 01:48AM Heidenia wrote:

Hi gals! My first post ever....
Everyone is soooo kind here. Is there a risk to developing cancer from nipple that some how
Still have cancer cells? How do the docs know they arent just reattaching nipples that carry LCIS cells?

I have dx mucinous carcinoma grade 2, DCIS stage 0, LCIS grade 2
Toughts?

Dx 7/6/2011, IDC, 1cm, Stage I, Grade 2, 0/11 nodes, ER+/PR+, HER2-
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Jul 16, 2011 01:38PM awb wrote:

Heidenia----I'm sure there is some level of risk involved, but I would guess it is pretty low, as the lobules are not located close to the nipple, I think they check for it microscopically, before reattaching.

anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 23, 2011 12:44PM ArleneMarie wrote:

I've read quite a few medical reports stating that the risk is extremely low in contracting breast cancer in the nipple after going through a nipple sparing mastectomy.  I believe it was less than 1 percent.  i quickly googled and found this medical abstract stating that there was no reoccurance after 24 months after the npple sparing mastectomy and those women had DCIS and IBC.

  http://www.ncbi.nlm.nih.gov/pubmed/17084333

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Aug 30, 2011 11:19AM ArleneMarie wrote:

Hi Ladies!

I just finished my fat grafting surgery and, although I am bruised and a little bit sore, the end result looks pretty good so far.  My PS asked if I wanted to take some fat from my tummy.  I am over 45 and for some reason, I started getting a pudgy tummy even though I never had children.  Therefore, I was extremely happy when he suggested the stomach area.  I have a compression bandage on it now but I can see a slight difference downward.  Like I said, it was never a big tummy but , still, it needed some fat removal.  He also took out the fat pockets near my armpits that also come with age.  Lucky us for getting those.  The boobs are more naturally sloped and it doesn't look so much like a flat collarbone and then, boom, round silicone boob.  They transition nicely now.  It was a pretty easy operation and as soon as these black and blue marks disappear, this should be my last operation.  Thanks for reading :)

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)
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Aug 31, 2011 10:31AM BritValarie wrote:

Hi ArleneMarie,

I was diagnosed last month with ADH and LCIS.  I have extensive family history.  My mother died from BC at the age of 38.  My grandmother, her mother, died in her 40's of BC and my mother's sister was 42 when she passed of BC.  Also a couple of cousins who had BC but survived.

I will be having an excistional surgery next Friday (Spet. 9th).  I have been researching a lot and I'm not sure I'm confortable with close monitoring after reading so many stories here.

I am glad you are doing so well after your surgery...and thanks for sharing your story!

Valarie

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Aug 31, 2011 01:27PM ArleneMarie wrote:

Hi Brit,

Yup..it hasn't even been a year yet and I am pretty much back to normal.  Good luck on your surgrey.  There will be uncomfortable days, you can bet, but nothing as miserable as chemo.  I am thankful everyday for the decision to proceed with the PBMX.   Somedays I may be a little out of sorts in the boob area but, as my husband said, when you get older there are going to be aches and pains no matter what.  Good luck and remember to let your body heal.

Dx 8/2010, LCIS Surgery 12/13/2010 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/10/2011 Reconstruction (left); Reconstruction (right)

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