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All TopicsForum: Living Without Reconstruction After a Mastectomy → Topic: I look for other flat chested women. A rant.

Topic: I look for other flat chested women. A rant.

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Jun 13, 2012 02:39PM, edited Jul 2, 2012 06:56PM by MT1

MT1 wrote:

I know many of you wear prosthesis, so I probably wouldn't be able to see or 'know', but. I look for you. I want to see you. I want to form a union, lol. I wish it were even more accepted, acceptable to be flat. To not wear prosthesis, not feel the need to, to opt out of reconstruction-if that is your choice. I do hope that women who see me, flat as can be, see there are options, that reconstruction isn't par for the course. I want to make flat beautiful, sexy, stylish. Normal. And it is normal for me, is becoming normal, but I am talking about society, norms and expectations. Breast cancer is not about 'boob jobs'. Yes, many of us opt for them, want and need them. But it is also about choosing to be flat. 

Geez, would I like to meet up with other flat chested women. I would love to take over a hotel, make noise, laugh, cry, be flat together-to see you. I want to meet other women who, like me, have decided not to reconstruct. I want to be able to see you and high five! I want to experience our society of normal.

I was picking up my vegetables from the CSA and a man could not stop looking at my chest, I wanted to yell, 'Breast Cancer did this!! Get it together, man!' I wish all of us would!

Rant complete.

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Nov 30, 2012 05:36PM Frapp wrote:

Djustme, sorry to hear of your non-draining issues. They send people home too soon now a days. I hope things go well and your body kicks in to heal itself. So sorry you had to go through this.
Pat

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2-Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2-Surgery 11/02/2012 Mastectomy (Both)Targeted Therapy 12/20/2012 AfinitorHormonal Therapy 12/20/2012 AromasinChemotherapy 02/20/2013 Taxol
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Nov 30, 2012 05:54PM pip57 wrote:

Djustme....I am really surprised that they sent you home on the same day. I had to convince them to let me go after 2 nights. And, in hindsight, I am glad they did keep me that long.

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex

Dx 2/1/2007, IDC, Stage IIIb, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Nov 30, 2012 05:57PM SheChirple wrote:

I have posted a couple of times, although I have not chosen to be flat.  I chose reconstruction. It has been a struggle for over a year now, and continuing.  I have always respected the ladies who choose not to reconstruct.  It is such a personal decision. There are days when I want to jump on board.  I have had 4 surgeries in the last year and sometimes feel that it is just not worth it!  

After a year of surgeries, I now have a permanent left implant and a flat right side.  I do have a medical prosthesis, a very nice one, for the right side.  I wear it in public, never at home.  I am scheduling more surgery for reconstruction.

I hope you don't mind if I continue to follow your thread.  In making my reconstruction decision, I have 4 options, really.

1) Leave it like it is, wearing the prosthetic when I want to and being one sided.

2) Have the left implant taken out and go fully flat.

3) Replace the implant on the right, which involves placement of a tissue expander, fills and then exchange (so 2 more surgeries over a period of probably 3-6 months.

4) Remove the implant from the left and go with full DIEP reconstruction.

It is a personal decision, and I'm not asking for recommendations, or imput, I just want you to know where I am coming from and why I am interested in your thread.

It is encouraging to read your discussions about feeling so comfortable in your own skin.  I'm getting there.  Today I got a phone call and jumped up and out of the house to the MALL without my prosthetic.  I'm wearing a pretty tight t-shirt with a tight velvet stretch sweat suit over it, so it was REALLY obvious that I was lopsided.  I didn't even notice.  I did not notice anyone looking at me, either.  I realized it when I got back in the car to come home and put on my seatbelt.  It kind of felt good. I am rethinking reconstruction...................

A smile is the most beautiful curve on a woman's body.

Dx 10/14/2011, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-Surgery 11/28/2011 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 07/23/2012 Reconstruction: Breast implants (permanent) (Both)Surgery 08/14/2012 Reconstruction (Right)Surgery 05/24/2013 Reconstruction: DIEP flap (Both)
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Nov 30, 2012 06:17PM BoobsinaBox wrote:

SheChirple,

You are always welcome here! Good luck with the decisions you have to make.

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Nov 30, 2012 06:29PM Frapp wrote:

Shechirple, I hope you are able to find what is best for you and are confident in your decision. Welcome.

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2-Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2-Surgery 11/02/2012 Mastectomy (Both)Targeted Therapy 12/20/2012 AfinitorHormonal Therapy 12/20/2012 AromasinChemotherapy 02/20/2013 Taxol
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Nov 30, 2012 07:56PM LindaKR wrote:

Shechriple, good luck with your decision, it is a difficult one, and it must be a little more difficult considering the issues you've had.  Hope you have a great weekend.!

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema.

Dx 3/19/2010, IDC, 4cm, Stage IIIa, Grade 2, 5/18 nodes, ER+/PR+, HER2+Surgery 04/02/2010 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 05/15/2010 carboplatin, TaxotereTargeted Therapy 05/15/2010 HerceptinHormonal Therapy 09/15/2010 AromasinRadiation Therapy 09/25/2010 External
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Dec 1, 2012 12:48AM Momine wrote:

Shechirple, of course you are welcome. Sounds like you have had quite the year.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 1, 2012 04:24AM alexandria58 wrote:

Shechirpie: welcome.  All of us recognize how personal the decision is - and how difficult it is to make.  Good luck with it. 

Djustme: Sorry to hear of your draining issue.  My drain on the right side didn't work either.  The surgeon wound up taking fluid out by syringe several weeks in a row and then finally just letting it reabsorb.  I, too, went home the same day as my BMX, and was surprised about it.  The only thing about getting out the same day is hospitals are hotbeds of infection, especially drug resistent types.

Dx 2/22/2011, DCIS, Stage 0, Grade 3, ER+/PR+
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Dec 1, 2012 08:26AM FlatNFabulous wrote:

Perhaps this is really a general question out to all of us.  I know I have had a sense that recon is being pushed out there and no recon, particularly no recon and flat is almost never offered as an option by the professionals, even in passing.  Is this what is really happening on the ground out there or is it not at all the reality for most women.  As to the recon options, were you just given the rosy if everything goes perfectly picture or were you also informed of what can happen when it doesn't go perfectly or outright fails?  From what you were told would you have ever guessed that it could be a couple years of your life with multiple surgeries to tweak and try to get it right as we seem to see so many times on this board.  I know we have a whole range here from those who tried recon and gave/or were forced to give it up to those who chose no recon from the get go to those who may still decide to go back and recon.  So my question really is not what we decided or not but in retrospect, do you think you went into it truly and realistically informed?  And informed by the professionals or your own independent research?  Or you really had no idea of the implications whether for or against lumpectomy, UMX, BMX or any form of recon.

My best friend (a fellow BC sister) had walked me through the standard of care in the time leading up to the first appt. and I had researched a lot on my own before I ever walked into the BS office.  I came in presuming I would have a lumpectomy either with or without massive reductions on both sides, followed by radiation.  There was only one real input from the BS which actually took me going home before it really sank in.  "If you have a mastectomy, you would not have to have radiation."  Once that sunk in, I went in and announced I wanted a BMX, no recon and no prosthetics.  It was said firmly with no equivocation.  So at the end of the day, I wasn't offered alot of options but it was also clear I had done my homework and was not looking for any more input.

Could we take a bit of a poll on the professional input we each received in the beginning of our journeys.  Some are alot further out than others so the timing is probably important to the answer as the professional stance even a decade ago is likely not the same as it might be in the last year or two.  So I guess the question boils down to did each of us walk out of our early meetings ready to make fully informed decisions or not, and did being fully informed come from your professionals or your independent research.

Barbara

Flat & Fabulous - Freed 'em when they tried to kill me. ♥Flat & Fabulous, Closed Group on FB♥ for all with no recon, failed recon, or considering options.

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Dec 1, 2012 09:17AM Wren44 wrote:

My decision came from my own research. I was given a lot of literature and a list of websites with good info (BC.org was right after NIH) and read Dr. Love's book. When I was offered an appointment with a plastic surgeon, I turned it down.

Dx 11/11/2011, IDC, <1cm, stage 1b, Grade 1, 0/3 nodes, ER+/PR-/HER2-. Lumpectomy and SNB 1/4/12. Reexcision for better margins found 2nd IDC >1cm, stage 1b, grade 2, ER+/PR+, HER2-. Mastectomy 2/22/12. Arimidex.

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Dec 1, 2012 10:10AM, edited Dec 1, 2012 10:30AM by Djustme

Last year - I was offered lumpectomy, but like you Starak, as soon as the surgeon mentioned that I would not have to have radiation if I had a full mastectomy - that was it. I really didn't want to hear anymore -mastectomy meant no radiation and no further surgery so that was my answer.  He asked me about reconstruction and since I had already done my homework on that account, and did not want further surgery,  I told him I would not even consider it, so he dropped it.

This year for my prophylactic mx - I had a different surgeon (first surgeon retired). He talked to me about all the different reconstruction possibilities, my answer was simple. Each option would require more than one surgery and lots of follow up, so my answer was no, no, and no. He wanted to set me up with an appointment to see the plastic surgeon and I politely said no to that also - My mind was made up. He said he did not disagree with my decisions, he was just required to make sure that I knew I had options, and that I was certain of my decision. I think if it's obvious you have done your homework, the doctors are willing to listen.  But they don't want to be accused of not giving you the option of reconstruction either. But you are right Starak - the pitfalls of reconstruction were not discussed, just the possible options.  I don't know if the plastic surgeon might have gone over those pitfalls if I had elected to see her.

I pray that the surgeon will not have to open me up again due to the non-drainage/clotting issue of the mx just done Wednesday, and that the issue will not affect the way it looks, or feels afterwards.  I will know next Friday I guess.  

Dx 10/5/2011, DCIS, 4cm, Stage 0, Grade 3, 0/2 nodesSurgery 11/01/2011 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Surgery 11/28/2012 Prophylactic Mastectomy (Right)
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Dec 1, 2012 10:35AM, edited Dec 1, 2012 10:40AM by Tina337

"Had she voiced the option of living flat, I think I might have felt better about it sooner than I did."

Happee2BMe - I think you hit the nail on the head for a lot of the women here. Presenting something as an option normalizes and makes it seem acceptable. Otherwise, the choice feels like one is bucking society's norms. Looking and feeling feminine isn't tied to whether a woman has the appearance of breasts. Telling your BS about this at your next appt is an excellent idea.

Edited to add: I need to think more about how things were presented to me and the info I was given in order to present an accurate picture. Be back with that.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw

Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Dec 1, 2012 11:17AM greenfrog wrote:

Djustme - sorry to hear you are having some problems. I had a collosal seroma (sp?) after the first MX - amazingly my body reabsorbed most of it without too much intervention. I hope that you don't need follow up surgery.

I have been given a month off of Arimidex and will be facing a change to a new AI for my final year. I cannot tell you how fabulous I feel for the first time in 4 years. I know AIs are great drugs but my god they rip the guts out of you.

We obviously have a very different health system in the UK - no shopping around for where you want to get your treatment. There happens to be a very anti-recon mood at my hospital so immediate recon was never an option. (At a different hospital I may well have opted for immediate recon when I was diagnosed because I was in such a tailspin.) The cancer people keep very focused on the cancer and let the plastic surgery people do their stuff at a later date. My brilliant female surgeon and her team of female doctors have nothing but distaste for reconstructed breasts and can't find a good word to say about them. Whenever the idea of reconstruction wanders into my head I can hear my surgeon raging away about how much she loathes it.

When I was first diagnosed the hospital swamped me with leaflets on mastectomy clothing, prostheses etc. I would have loved to have had some literature on living totally flat. I was given my prostheses as a matter of course - nobody asked me if I really wanted them they just assumed I did. Living flat was never presented as a specific option but I found my way to it myself and have been fully supported by the medical team. When I returned after a year as a uni-boob asking to have the other one removed they didn't hesitate.  I know other women haven't been so fortunate. Indeed I hear of a woman at a different hospital who had to undergo 6 weeks of bloody psychiatric evaluation before they would allow her to have the PMX. Isn't that appalling?

Dx 5/2008, IDC, 1cm, Stage I, Grade 3, 0/19 nodes, ER+, HER2-
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Dec 1, 2012 11:53AM LindaKR wrote:

In March 2010 when I was diagnosed I was not given the option of recon my by BS, at the time he pretty much knew that I would need MX, chemo and radiation, and he wasn't sure how radical the MX would have to be to get all the tumor! This spring at my 2 year Post-surgery appt, the same BS mentioned that I might look in to recon, and that now he was doing recon with most of his MX's (he hadn't been 2 years before, in fact he seldom did 2 years before).  I think there was a big push by a couple of PS's in his city to work together on it.  Now my RO thought that I would want to have recon once the treatments were over and my body had healed (say a year or two post radiation), she felt that with my personality I would want to be reconstructed (WTH does that mean - did she think I was vain?). My MO isn't a big fan of reconstruction, he understands why some women do it, but he does not want to be part of that discussion, I believe that if it were his wife, sister or mom, he would recommend no recon.  My PCP, thinks it's ok, but is not a big proponent of it it either and would not have it herself. Oh, and the PS I saw, just to really know my options, does them, is one of the best in the area where I went, but was rather reticent about recommending one for me.  He said that it could be done, that he would want to send me out of state to have it done, and once I said I wasn't that interested, just wanting to know my options, it was like he was relieved, he feels that recon can hide recurrence, they aren't necessary, and definitely aren't for everyone, he was much more interested in helping me if I just wanted a reduction of my non-BC side so that I wouldn't be so lopsided.

It's kind of interesting the differences of opinion in just my treating physicians.  Sometimes I wonder if this whole push for recon isn't just a big push by plastic surgeons, especially since our insurance will pay for it, they don't get many patients whose insurance will pay for the treatments offered by PS's - could it be a sign of the economy - is that cynical??

I better get off the computer now, as I sit here and keep typing on all the different forums, I can watch my LE hand get bigger and bigger.  Can't wear compression until my new sleeve gets in, well unless I wrap my hand.  Have a great weekend.Laughing

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema.

Dx 3/19/2010, IDC, 4cm, Stage IIIa, Grade 2, 5/18 nodes, ER+/PR+, HER2+Surgery 04/02/2010 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 05/15/2010 carboplatin, TaxotereTargeted Therapy 05/15/2010 HerceptinHormonal Therapy 09/15/2010 AromasinRadiation Therapy 09/25/2010 External
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Dec 1, 2012 12:23PM Erica wrote:

Interesting to read about everyone's different experiences. I was fortunate to be treated by a breast surgeon who didn't push me one way or the other. When it became apparent that I would need a mastectomy of my left breast, she didn't automatically give me a referral to a plastic surgeon. That may have been because by that time she knew me quite well. I'd been treated three years earlier with lumpectomy and radiation of the right breast and had already had two wide excisions of the left breast. She knew I was a research maniac and had checked out my options regarding a mastectomy.

I was leaning toward not reconstructing all along, but actually did consult a plastic surgeon to make sure I was fully informed. Neither DIEP flap nor implants appealed to me and my DH turned positively green when the PS described the procedures.

At the same time as I was deciding about reconstruction, I was also trying to decide about whether to have a unilateral or bilateral mastectomy. Having had primary cancers in each breast, I really felt I wanted to do everything possible to prevent a recurrence, so I ultimately decided on a bilateral. My doctors all supported that decision.

The medical person who probably helped me the most in making the decision not to reconstruct was my primary care physician. I went to see her for an annual checkup which just happened to be scheduled right in the midst of my cancer diagnosis. She told me about two of her colleagues who had had mastectomies. One chose to have an implant and was very happy with it. The other chose no reconstruction and chose not to wear a prosthetic, either. My PCP (a fabulous women herself) described spending a day at the beach with her friend who chose no recon--her friend had on a bikini with one side empty and said, "This is who I am now, why should I hide it?"

I loved that story and it made a big impression on me and I appreciated my PCP's sharing something so personal. It really reinforced my decision not to reconstruct. Honestly, it made me feel that going flat could be not only okay, but actually something to be proud of. Clearly, a lot of women on this thread feel that way, too.  

Barbara

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Dec 1, 2012 12:58PM River_Rat wrote:

I got my dx over the phone and had four days before my appointment.  During that time I researched the various reconstruction options and didn't care for any of them.  My daughter is in the medical field and she got a book called, 'Show Me' out of the medical library and after I looked at the results of various options I found I liked the pictures of those who hadn't had previous radiation and hadn't had reconstruction the most.  

So after being told that I would require radiation and hormone treatment if I had a lumpectomy I decided on mastectomy.  After going over the fact that the mammogram and MRI picked up something in the opposite breast I decided on BMX without reconstruction.  My BS  seemed floored by my decision and over the next several weeks repeatedly told me that she could send me to a wonderful PS, until I told her flat out to never mention it to me again.  My PCP told me after she knew of my decision that those that she knew that had reconstruction went through a lot of pain.

I think everyone assumed that I would wear prosthetics, including myself.  And I did wear them when out in public for the first couple of years.  Then I gradually tried smaller and smaller things until I got comfortable with being flat and now very rarely wear prosthetics.  I think that if living flat without prosthetics had been presented as an option I would have gotten there faster.  But all things considered I think I would still want something for special occasions.

Fear is the highest fence. ~Dudley Nichols

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Dec 1, 2012 01:32PM LindaKR wrote:

Barbara - I love your story about the beach and the bikini.  I've done a fair amount of swimming at our local pool and hotels since diagnosis, I bought a bunch of cheap bathing suits (no bikinis) at local thrift stores (since chlorine ruins them anyway), haven't worn a prosthesis once for swimming, and nobody notices (and I'm very lopsided).  

River - loved the way you put telling your BS "flat out" not to talk about it again.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema.

Dx 3/19/2010, IDC, 4cm, Stage IIIa, Grade 2, 5/18 nodes, ER+/PR+, HER2+Surgery 04/02/2010 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 05/15/2010 carboplatin, TaxotereTargeted Therapy 05/15/2010 HerceptinHormonal Therapy 09/15/2010 AromasinRadiation Therapy 09/25/2010 External
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Dec 1, 2012 02:04PM Momine wrote:

Starak, my BS is not one of the ones pushing recon. He presented it cheerfully and off-hand as something easily done at the time of BMX and then I would have brand-new boobs. He urged me to have a consult with the PS to go over options. I never did make that appointment, so it is possible that I would have gotten the nitty-gritty there.

Mostly what happened was that the BS asked me to delay recon and then, having time and space, I started asking Mr. Google various things. Being a visual person from a tribe of designers, I first checked before/after pics. Initially I saw several pairs that looked remarkably good. Then I started reading the stats a little more carefully, and I realized that better than 9 times out of 10, the mangled recon boobs were the ones done on women with my treatment stats, whereas the good-looking ones were done after prophylactic or other skin-sparing BMX surgeries.

Then I looked at failure and complication rates, which again were higher once you had had rads etc, and factored in my already present LE problems as well as my extreme dislike (ok, phobia) of surgery and hospitals and became even more dubious about the project. 

Add to this that I am finally back to what I consider my normal weight, after many years of being chubby (by my weirdo standards anyway), so I am too skinny, as far as I can judge, for most of the flap surgeries, if not all. I am really enjoying being thin again, and I am not about to put on weight for the sake of making new boobs.

So, in short, my own research led to the current state of my attitude on this. I still plan to go talk to a PS one of these days, just to cover all angles.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 1, 2012 02:10PM Momine wrote:

Greenfrog, why does your BS not like recons?

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 1, 2012 02:17PM Momine wrote:

Speaking of doctor attitudes, I got slightly irate today. There was an article in some paper about recon options and it quoted a female PS who said it was her mission to help women restore their self-esteem and that nobody should have to feel mutilated.

I looked up the surgeon, and she sounds like a kick-ass broad, ex-military and probably a fantastic surgeon, but she has that self-esteem and mutilation crap on her website too. It bugged me to the point that I sent her an email. 

Thing is, if a woman does feel mutilated by a mastectomy and if it does affect her self-esteem, I certainly wish fervently that surgery can help her. But it really bugged me to think that it is assumed that most women feel this way and/or that this is the reason for seeking recon. Even if I do have recon one day, it won't be to fix my self-esteem or to make me feel less mutilated (isn't recon only more mutilation, from one point of view, especially the flaps?).

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 1, 2012 02:44PM alexandria58 wrote:

I first had a lumpectomy, DCIS, 7 cm by 3 cm,  mixed grades, mostly intermediate with a little high grade. My first doctor said, you're fine, good margins, need radiation and tamoxofen.  (have an aunt who had uterine cancer.)  I talked to the radiologist who basically said 1-2 percent chance it comes back with an MX, 8-15 percent change with rads and tamoxifen.  I got a copy of my pathology report and found actually that margins weren't clear, I had atypical lobular hyperplasia and atypical ductal hyperplasia in the margins.  I went to another oncologist who said that the ADH in the margins dramatically increased my chances of recurrence and recommended BMX, said whatever I been exposed to that had caused the cancer in one breast could still be cooking away in the other.He also recommended against recon for at least 2 years - said if there is a recurrence, the recon could hide it.  Found a bunch of articles that pretty much supported what oncologist 2 said.  http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=35583

I went to BS in Philly who noted the size of the DCIS that had been removed and recommended MX and wanted to check out an area on the mammogram that looked worrisome.  I said take them both.  She tried to talk me into recon, showed me pictures, wanted me to meet with the plasic surgeon.  I hadn't wanted recon - and told her no recon.  She dropped it.

Dx 2/22/2011, DCIS, Stage 0, Grade 3, ER+/PR+
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Dec 1, 2012 02:56PM Outfield wrote:

I feel mutilated, no doubt about it.  I am.  I have lymphedema (mild), I have permanent discomfort (not so bad, but I hate that it's there) in my axilla, and I miss my nipples terribly.  I also have no doubt recon wouldn't help these things.  My self-esteem is fine.  I'm just in mourning.

My BS was fine.  Couldn't say "understanding" or "supportive" because she's kind of an odd duck, but in her own way she was those things, I guess.  I did get an automatic appointment with a PS after surgery, which ticked me off a little because I had said from the get-go I didn't even want to talk about reconstruction and that if I ever, ever considered it, it would be later, but I was pretty sure I never would.  I just cancelled the appointment and it was no big deal.  

My MO's and RO have been fine too, except my first MO was surprised I didn't want a wig (my MO's keep leaving, it's not me firing them.  My friends never would have let me live that down if I'd taken one, but I realized a few months later that hair on the head is actually functional.

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Dec 1, 2012 04:45PM kmpod wrote:

I had two mastectomies in 2011, one in July and one in October.

I was presented with the optiton of mastectomy and no rads on the cancer breast or lumpectomy and radiation. Reconstruction, if I desired, would be one or two years out and would be performed in a different city.

I had already done some research and knew then that I did not want rads unless there was no other option. I also knew that I did not want the increased risk and multiple surgeries that reconstruction would entail. (Fifteen minutes on the reconstruction thread here convinced me of that.)

For me it was just a question of practicality - reduce risk as much as possible with the minimum of medical procedures.

My hardest decision was whether to do unilateral or bilateral surgery. After much agonizing I chose to do a unilateral because I would be more independent post-surgically. I emphasized to my surgeon that I wanted to be flat as possible with no dog ears but I think she doubted the firmness of my decision (or perhaps projected her feelings on me). She did skin sparing surgery and I have a moderate central dog ear.

After having read my path report and realizing that my breast was a veritable hatchery for cancer I decided that I would have a left prophylactic mastectomy as soon as it could be arranged. The surgeon agreed to do it but was asking me, even as I was being wheeled into the operatory, if I wanted to change my mind. I didn't.

This surgery was done leaving no extra skin or dog ear, so I've ended up somewhat asymmetrical in appearance. She had the good grace, after the second surgery to apologize to me for the appearance and assured me that the right side could have a revison to make it match the left side. At this point I have no intention of gettting that revision even though I find the difference between the two sides visually aggravating.

As it turned out there were several foci of ADH in the left breast and she said that I had definitely made the right decision in having the second surgery.

So, it was due to my own indecisiveness that I ended up with two separate surgeries; but I do think my surgeon also learned something from my interactions with her - that going flat is actually a matter of preference for some women. Shortly after my second surgery she asked if I would call one of her new patients who was also wanting to consider mastectomy with no reconstruction to talk about that with her.

I just want to say that I was very fortunate to have discovered BCO in my early days in the breast cancer maze. The information and the empathy that I found here guided my decisions and kept me grounded. I'll be forever thankful.

kathy

Dx 7/15/2011, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Dec 1, 2012 10:57PM coraleliz wrote:

At first I thought my BS was discouraging reconstruction or even lumpectomy. Then when I brought my husband to my next appt(after the MRI found BC on the other side), she seemed to turn on me. Saying things like she could try & get clear margins but it would involve additional surgery if she didn't. With the cards I was dealt, I needed a MX on on side but on the other I could have a lumpectomy +RADs. DH was great about it. Said it was a no-brainer that I should have a BMX & that having recon would being trading one pair of problems for another. I ended up getting RADs bilat despite the BMX but that's another thread........I also skipped the PS consult

A year after my BMX, my BS told me about her friend in a similar situation to mine who chose the same treatment path. She thought both of us were doing a good job of getting on with life & getting out of "being a patient" mode.

I don't miss my breasts(good riddance). After 20+ years of mamograms(started at 30), I was putting them off & becoming increasingly intolerant of them. I am really, really comfortable being flat. Hugs can be kinda weird though....

Dx 2/28/2011, IDC, 1cm, Stage II, Grade 1, 2/4 nodes, ER+/PR+, HER2-
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Dec 2, 2012 01:04AM Momine wrote:

Outfield, I do know what you mean about the mourning. 

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 2, 2012 06:31AM Frapp wrote:

Nothing was mentioned to me. I was diagnosed stage IV from the get go 3 years ago and told mx won't extend life so not recommended, I followed the treatment plans until a new cancer showed up and started growing so fast into the skin that it was causing pain. My mo suggested removing it since all other tumors were responding to treatment but the one in my breast. She surprised me and had the surgeon there to speak to me that minute. I asked about having a DMX instead of a umx but the surgeon said she didn't believe in removing healthy tissue. She did't want to give more opportunity for infection. I just didn't feel right about a umx and kept questioning the Medical people involved and got my mo on board with me. She spoke to surgeon who agreed and I had a dmx done on 11/2/12. No one mentioned recon but I'm sure that's becauseof my stage. I am relatively healthy with no more pain. I work 9 hour days and life goes on as normal. I am glad that I pushed for the DMX. I just could not see myself with one DD size breast. I'm all about options and that really didn't leave any. In the end, it turned out that not only did they remove the 11cm tumor in my right breast but also found a 3 cm tumor in my left. I'm glad they're gone and am actually enjoying going out flat. I have not returned to work yet and I do have an apt for a fitting of prosthesis but feel I will use them like I do scarves and jewelry. If I feel like dressing up, I can or I can just be comfortable.

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2-Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2-Surgery 11/02/2012 Mastectomy (Both)Targeted Therapy 12/20/2012 AfinitorHormonal Therapy 12/20/2012 AromasinChemotherapy 02/20/2013 Taxol
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Dec 2, 2012 06:42AM, edited Dec 2, 2012 06:56AM by FlatNFabulous

Thought I would share the other bit of early experience.  About a week or so before the BMX I was sent to the local mastectomy shop to purchase a post-surgical cami.  I am a Princess & the Pea girl in the best of times, often reacting or more to the point over-reacting to sensations.  I was already in emotional overdrive at the appointment and my skin was already starting to crawl in anticipation.  I asked to see breast forms just to see what they were about.  The only ones they showed me were large contact forms with the nobby back.  I was totally horrified when they said women stuck/glued them to their bodies.  In spite of hints I dropped, these were the only forms they showed me.  Then they insisted I needed size C or D fluffies for the cami.  I saw them as way too big, lumpy, didn't look like breasts to me and the mere thought of putting these lumps against my chest nearly drove me off the edge and this was before the BMX.  At some point during recovery I think I tried them on and couldn't get them off fast enough.  No one even my Yorkie girls, ever saw me with them.   Breast forms were off the table and would remain so until removal of The Mutants.

Edited to note, that a lady at the MX shop told me a woman would really have to have a pair to go flat.  While I did overcome that attitude, it certainly made it more difficult than it needed to be.

While we are on the early days and even though it is not about recon, I thought this might be of interest.  My BS who I think is wonderful, uses all internal dissolvable stitches.  She also uses Ace bandage compression wraps.  The thing I found different and interesting is that she specifically instructs her patients to shower or bathe every day including the surgical area. Not that you can but that she specifically wants you to.  I have no idea if I am right or wrong, but I wondered at the time and have continued to wonder if much of that was to more quickly return to a sense of normalcy and perhaps even more so to begin the process of accepting and embracing the new body.  At least it did work that way for me.

Barbara

Flat & Fabulous - Freed 'em when they tried to kill me. ♥Flat & Fabulous, Closed Group on FB♥ for all with no recon, failed recon, or considering options.

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Dec 2, 2012 08:18AM, edited Dec 2, 2012 08:20AM by Erica

This isn't directly related to going flat but is to the question of why we make the choices we make. My first time around (cancer in my right breast), after an excisional biopsy and two wide excisions, my BS told me she had finally gotten clean margins around my tumor (invasive plus DCIS), so I didn't need a mastectomy and could follow up with radiation.

Like many of you, I would have liked to avoid radiation and would have considered a mastectomy for that reason, but my tumor was right up against my chest wall. Even with "clean" margins, there was less than a 1mm margin between the tumor and my chest wall. I realized that a mastectomy couldn't have gotten any closer since the surgeon went right up to the fascia (in fact, she may have removed some fascia). But if I'd chosen a mastectomy, they wouldn't have followed up with radiation. Given my particular situation, I actually felt that the more thorough course of treatment would be a lumpectomy plus radiation. I hoped the radiation would kill any stray cells that might be lurking at the chest wall. 

Three years later, having been told I needed a mastectomy of the left breast and I having chosen at that time to have a BMX, I was relieved when the pathology on the right side showed no cancer. So, while I wish I hadn't needed radiation, in my case it contributed to my peace of mind (and maybe my outcome). I had a wonderful RO who was the most compassionate of all my caregivers, so that helped, too.

One of my mantras throughout my cancer journey has been to try to pick the course that would leave me with the fewest regrets. Easier said than done, I know. But I very much felt that way when I elected to proceed with radiation and I also felt that way when I decided not to have reconstruction. I knew that if I tried recon and it left me with pain, a lopsided result, or anything less than perfect, I would regret it. Since perfect is pretty much impossible, it was a no-brainer to choose no recon. Six years later, I haven't regretted my choice. 

BreastFree.org (breastfree.org); BreastFree Blog (breastfree.blogspot.com); Twitter @BreastFree

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Dec 2, 2012 09:59AM, edited Dec 2, 2012 10:00AM by Djustme

thank you for your kind words Greenfrog. I hope the next therapy is not as hard on you as the past ones.  And yes it really depends on the hospital and surgeon you have in Canada as to whether you will have a hard time getting a pmx.  I know women who have begged their surgeon to do a pmx each year they see the surgeon, but have not been granted their wish.  My surgeon only made me wait four months and then talk to him again to see if I changed my mind, then said sure, I can do that. 

As some of you have pointed out, if going flat was presented as an option, then it would normalize it and not make it seem like you are a radical for not wearing foobs, or having recon.

Dx 10/5/2011, DCIS, 4cm, Stage 0, Grade 3, 0/2 nodesSurgery 11/01/2011 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Surgery 11/28/2012 Prophylactic Mastectomy (Right)
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Dec 2, 2012 04:06PM marilyn113 wrote:

I had a BMX on 8/1 and have been going flat to work, and everywhere else, for 3 mos.  After years of underwire bras, it was so comfy to go flat.  But I can't wear my shirts with darts, and since insurance covers the foobs, I figured I should get a set.  I've been carrying around the prescription for a couple of months, sure I wouldn't like them or wear them.  I finally went Thursday and got a B cup...just enough to make my clothes hang better (and take attention away from my midsection.) 

I have some lightweight Barely There bras and popping the foobs in them next to my skin works great.  I wore them to work Friday and it wasn't too uncomfortable.  I had an appointment with a surgeon in the morning (gallbladder) and when he was listening to my chest through my clothes, I wondered if he could hear through the foobs.  After that he asked if I had had reconstruction.  I said no, they were prosthesis.  He replied, "Oh!  They look good."  I blurted out, "Thanks!  I just got them yesterday."  Later I realized what a bizarre conversation that was.

So I will probably wear the foobs with my dressier clothes, but will still go flat when dressed casual.  My flatness is my badge of honor; a testament to what I've gone through.  I'm not afraid to show it.

Dx 11/11/2011, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 08/31/2011 Lumpectomy (Right)Surgery 11/08/2011 Lumpectomy (Right)Surgery 11/23/2011 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 12/13/2011 ExternalSurgery 08/01/2012 Mastectomy (Both)

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