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Topic: How do I get over the lost of my breasts ?

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: Sep 26, 2020 04:56PM

Hope2021 wrote:

It's been 6 months since my BMX and I'm still sad / depressed over the lost of my boobs. I didn't want recon and I still don't, but the loss has been hard to adjust, or get use to. I was fine right after surgery. I was happy the cancer's been removed. But when I had my follow up on my 6th week, and the surgeon finally removed the steri-strips, that's when I first saw the bare chest and started to cry ever since. This month, my 7th month, I've been better. I think the tear well is dried up, I'm just sad now a days. I don't know how to shake it off.

I try to keep myself busy, taking care of the kids, working from home due to covid, exercise more, sleep better, write my thoughts in a journal. All that helped, but my mind just wonders off and drifts into a sad place sometimes. I can't help it. I feel the emptiness in front of me, constantly, even when I wear my foobs. I avoid looking in the mirror in the bathroom because it upsets me too much. I don't change in front of my husband anymore. I keep my top on when we have sex.

I never thought I would be like this. The surgeon only talked to me about the tests, procedures, surgery options, the arm exercises after surgery. She never talked to me about the emotional toll. Even in my follow ups, she never asked how I am coping. I had to bring it up, and her solution was to refer me to a psychiatrist, or join a support group. So here I am.

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Sep 26, 2020 05:30PM exbrnxgrl wrote:

Hi hope,

I have not been in your shoes but there may be others who have been an I hope they will post soon. An online support group can be helpful but after 7 months, a therapist might just provide you with the boost you need to understand why you’re feeling that way and how to move forward. Although it would be great if surgeons and/or oncologists did focus more on the emotional aspect of bc, that is not their specialty. At my treatment center, cancer patients are given a referral to a psychiatrist who specializes in cancer patients. I chose to take them up on the referral and am glad I did. I love my mo but she is not the expert in emotional toll bc can take. Wishing you the best.

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 26, 2020 05:49PM LivinLife wrote:

I agree with exbrnxgrl... I am in a good place with the surgery decision I made though realize others feel such loss and difficult change after BMX! You mention children so sound like you are in a different place in life too. If I were younger I imagine it would make more of a difference for me in different ways too. You are clear this is emotionally painful for you and it's not improving as time passes. I agree too that some medical providers have quite a bit of empathy while others more focused on their expertise at hand which ultimately is what they all have to make the priority. Physicians are so limited with time too which makes it difficult even for the empaths to spend much time with patients.

Psychiatrists deal more with medications while some do therapy - not sure what that looks like b/c that is generally not their training. Psychologists (PhD or PsyD), LCSW's, or LPCC's (some states) are trained to do therapy. Most do individual and some offer support or therapy groups. It would be a great treatment adjunct to talk with someone who can truly listen, be empathetic, validate and help you find ways of coping and accepting your new body. It may be more helpful to work with a woman??? Just a question to consider. It may be helpful to ask if the therapist is experienced, or has some experience, working with cancer patients though honestly I do not think that should be a requirement per se. I think if the person and their style is a match for you it could be really helpful. Just some things to consider.... It is harder during this time of COVID too b/c most therapy is occurring on-line or via telephone. Such a difficult way to begin therapy though I'd still say give it a try. it is working for many even if in-person is better.....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 26, 2020 07:12PM Catsme wrote:

Hi Hope2021,

I agree with everything said so far. I received a referral to a councillor at the time of diagnosis, and so glad I followed through. It really got me through that 1st year.

One of the things that I realized is that my life was simpler without boobs. I just get up, throw on clothes and go. I even found super cute athletic swim suites. No more bras and bra strap issues. I'm not in anyway downplaying your loss, just sharing my experience.

And time really does ease the change to this new body.

One experience that surprised me, is that I was sadder about losing two teeth (back molars) than I was the loss of my boobs.

Hugs, and give yourself grace and time to heal.

Dx 12/7/2016, ILC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 1/4/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 1/20/2017 Arimidex (anastrozole)
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Sep 26, 2020 07:46PM Hope2021 wrote:

exbrnxgrl, LivinLife, Catsme, thank-you all for your input. Maybe on my next check up I will ask for a referral. I never talked to a therapist before. I might not be comfortable opening up to a stranger. Talking about my breast is rather personal. Lets see.

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Sep 26, 2020 09:27PM - edited Sep 27, 2020 07:02AM by Moderators

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Sep 27, 2020 05:39AM LivinLife wrote:

Hope - if it helps - I am a psychologist... I've had this conversation with others and many other personal discussions with people dealing with cancer, other medical issues, etc. If you find the right person you will have a good experience. there are many good therapists out there. there are some not that great as well. If you don't feel the first person is a good fit for you after 2 or 3 sessions then find someone else. You've taken a huge first step by opening up here and becoming more willing.... Let us know how the discussion goes at your next check-up.... You are worth following through on this!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 27, 2020 07:21AM Moderators wrote:

Hope2021, It is not unusual to feel this way following this major of a change. You are certainly not alone with that. The others offer great advice. And coming in is a fabulous start to helping you feel more comfortable with your body again. We're glad you joined, and keep sharing. We're all here for you. Medicating

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Sep 27, 2020 10:42PM Peregrinelady wrote:

Can I ask why you do not want reconstruction? I didn’t think I wanted it either, but I was not comfortable with being flat on one side. When I started thinking about reconstruction, my mood lifted and although it was a long haul, I am very happy with the results.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/17/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)
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Sep 27, 2020 10:53PM OnTarget wrote:

I hope that you are able to talk through all of your feelings with someone.

One thing a neurologist taught at a class was about sleep and stress, but it may help you.

Sit in a quiet place, and think of nothing but your missing breasts for 20 mins or so. Think if every little thing, positive and negative. How they look in the mirror, from each angle. How they make you feel- in the mirror, putting on clothes, putting on the seatbelt, seeing yourself in pictures. Whatever it is, think through it exhaustively.

If you do that for a few days, you eventually get sort of bored of it, and then find your mind going to other topics. I don't know the science behind it, but apparently we dwell on things when we don't address them exhaustively. I wonder if that's partly why it helps to talk to someone?

Anyway, this may not be up your alley, but I've noticed that it helps me with things I stress over.

Also- nothing is set in stone and you can write your own story. If you think being flat makes you too unhappy, there is always reconstruction.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/14/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/29/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 5/31/2021 Reconstruction (right): Tissue expander placement
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Sep 28, 2020 02:21AM Hope2021 wrote:

LivinLife- I think I'm just mad that I didn't get to say goodbye to my boobs. Things happened so quickly from diagnosis to surgery. I wish I had taken a topless pic of myself, like a boudoir photo. I wish we had sex one last time with him caressing them. I wish I had touched them one last time before the surgery. They are gone now, and there's nothing I can do about it. I find it hard to accept, but I'm starting to.

Peregrinelady- reconstruction.....I'm open to the idea. I don't want implants. I hear recalls and health complications. If anything I would prefer a DIEF flap. I have enough tummy fat. But with covid, they are not seeing anyone right now in my area. The back log will probably be for a year or more to get to me. Besides, I don't want to be out for 2 months again. I have work and I have kids to take care of. And the result may not turn out how I want it to be. It's a big gamble that I'm not willing to take. My husband don't want me to either. Doesn't want anything bad to happen to me.

OnTarget - I'll give it another try. I've done it before. Maybe not for 20 mins, and maybe not everyday, but I know what you mean. It's like I love shortbread cookies, and if I binge eat like a whole box of it all at once I get sick of it and don't want it anymore......but a few months later the cravings come back.

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Sep 28, 2020 08:01AM LivinLife wrote:

Yes, lots of life loss and emotion tied to the loss of breasts! I think it will help you so much to talk with someone - the listening, someone being very present/mindful with you and validating all helps with emotional healing. I think it can help empower you to know you have the choice to get reconstruction too - just knowing the option is there and you get the make the choice. Some of why you are choosing not to is why I chose not to - add years to that and the stage of life I'm in makes it less important to me now than it may have been a decade or two ago.

You also hit the nail on the head with how quickly all of this unfolds! I have been amazed the last week or two when I think back to July getting "the news." Then all the frantic of researching DCIS, grade, comedo-necrosis, higher risk of possible invasion, surgery options, considering where to get surgery, told I cannot have radiation due to having scleroderma - then all the appointments, then surgery and then just done - just done - all the flurry stops and it's just over. Obviously the latter point is good though it's like what the heck was all that? So trying to think through the loss of breasts during all that falls into the background even if people are also aware. I did a lot of research on all of that too though my life is much quieter than yours so that helped me tremendously.... I wish you well and keep us posted on how you're doing and when you have something scheduled..... hugs!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 28, 2020 09:47AM prepmom wrote:

Hope2021 - while I opted to have reconstruction (implants) I can very much relate to what you're now feeling. I also have to agree with what others have already said- I think that when we're first diagnosed the body and mind just 'amp up' and deal with the issue at hand - getting rid of the cancer. We have imaging and tests and more tests and then are just happy when a doctor(s) tells us how to get rid of it. We put so much energy into staying positive and hopeful and in my case even a little 'lucky' that I 'only' needed a double mastectomy - no further treatment. And then... it's over. You want to move on. People kind of expect that you've recovered from your surgery, so you're ok. Because you say you're ok and lucky and.... But your mind finally catches up and I think mine got 'stuck'. It was all I could focus on. The discomfort from my implants, how I looked. Because even with a great PS, I don't look like 'me'. I certainly don't feel like 'me.' I obsessed over the new shape, the new size, the slightest asymmetry.

About 6 months after my initial BMX and 3 months after my exchange to implants, I determined that I needed to find a therapist. This was such a big move for me, always so 'strong' - whatever the heck that means! I also saw my ob/gyn for a check-up and he said that he was worried about my obvious anxiety, so I agreed to take an anti-depressant. Huge move for me. But in my heart, I knew I needed both the therapy and the meds. I also increased my exercise (something that's always been a big part of my life) and started mediating.

I'm happy to say that with time and all of these efforts I now finally feel back to myself. It took a whole year! I'm no longer stuck. I am still uncomfortable at times, but I no longer ruminate on it. I think for some of us, we need to let our minds heal and it can take just as much time as our bodies.

Try to stay hopeful. Do anything you can to take care of yourself. You deserve it.

Sending hugs and my sincere best wishes.

Dx 5/24/2019, LCIS/DCIS, Left, <1cm, Stage 0, Grade 2, 0/5 nodes, ER+/PR+ Surgery 8/14/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 11/4/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 28, 2020 04:47PM Whatjusthappened wrote:

Hope2021, I so understand where you're coming from. I sobbed the night before my BMX and that was the last time I cried over it. After that, it was just doing what needed to be done. I went flat for 18 months, trying out various things-going out completely flat, all kinds of bras, inserts, and prosthetics, etc. I was always unhappy about it all, but not really ready to admit it to myself. Like you, I didn't want implants and wasn't a candidate for them anyway. My husband and family didn't want me to go through more surgery. I couldn't shake that feeling though, and started looking into reconstruction. I got a couple of consults and finally got on the books (took a while because of covid) for surgery. After I had it scheduled, I couldn't wait to have it done-that's how I know it was the right decision for me. I am not finished with the process-DIEP is not a one and done surgery for most women. But even with more scars, I am already feeling more like myself.

Not trying to sway you in any way, just letting you know that reconstruction can help with the emotional healing. It might be a good thing that you would have to wait if you opted for reconstruction. You can try therapy and see if that helps you heal emotionally first. You might find you are happy with no reconstruction, as so many women are.

I wish you peace with whatever you decide to do going forward. Honestly, there are no good options, but there is the best option for you.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Aromasin (exemestane) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Sep 28, 2020 06:47PM - edited Oct 7, 2020 03:17PM by wallycat

There are days I still mourn my boobs. They were beautiful and responsive and add to it, they fit the societal norm.
I think it is hardest when I watch a movie or flip through magazines where women are being shown with great cleavage or clothes fitting just right .......and I know that will never be for me. In my case, reconstruction would never give me back my sexual response/sensations and for myself, I might resent the plastic sitting inside and on top of my chest, cutting my muscle for the perception of boobs...a facade. I think I would resent them but I have a friend who was excited by the prospect of "being bigger and better..." so who's to say.

A loss is a loss and it is normal to grieve. That society puts so much value and emphasis on women's looks, and their breasts, is doubly frustrating and grieve-worthy.

Give yourself time. Give yourself permission to be angry. There are days I still cry or get angry...and then I focus on being alive and I tell my husband I'm "happy to be here to gripe about it..."

Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Oct 3, 2020 12:05AM Pontiac wrote:

I’m having a masectomy in 3 weeks.I have triple negative breast cancer.I am fortunate that my found the lump and encouraged me to have a mammogram.It has been frustrating and frightening getting all the drs lined up.I have moments when it all hits me and I break down.I did it with a group of old friends.I spoke to a social worker at oncologist and she helped me see that it is all normal.I can call her at any time which helps.I will be having chemo following surgery.It’s scary

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Oct 3, 2020 12:10AM Trishyla wrote:

From another Patricia with Triple negative (among others) you can do this, Pontiac! Chemo sucks, surgery sucks, but it's all very doable.

Good luck.


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)
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Oct 3, 2020 04:21PM Moderators wrote:

Welcome, Pontiac. We know this is a scary and uncertain time, but we're so glad you've joined our community - you have come to the right place for support. Everything you're feeling is so normal, it's an emotional roller coaster! We're all here to help you through this.

The Mods

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Oct 3, 2020 11:31PM Hope2021 wrote:

Pontiac - you have friends, and a social worker to talk to, and you've found this site and community, so you are in a much better position than I was. Yes, it is all too scary, with the drs, biopsy, so many tests and scans. All the ladies in this group have all been through this. We've made it through, and so will you.

I don't know, but you might want to take some pictures for mementos. Touch them all you want for one last time. Mind you, when I got diagnosed, I didn't like my breasts anymore. All I saw was cancer, and it's growing inside and hurting me. I just wanted to get rid of them.

Wish you all the best.

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Oct 4, 2020 03:19PM - edited Oct 4, 2020 03:36PM by buttonsmachine

Hope2021, I am in a slightly different situation, but I can relate to much of what you are saying. I am half flat with no option to reconstruct. That was not my choice, but it's how things went medically. The morning of my mastectomy I was crying in the hospital. I was lying on the hospital bed staring up at the ceiling, and it all just felt so wrong to me.

I still feel sad about it, even though it has been nearly three years. I miss my breast. Losing a part of our bodies just sucks, and there is no way around it. I think it's okay to mourn what we have lost, although it is best if the mourning doesn't become too overwhelming or all-consuming. I think there is some acceptance that comes in time, but it's a work in progress for sure. My advice would be to be kind to yourself and acknowledge your feelings. I do think reconstruction can help some people feel "whole" again, and that is okay. I know that would have been the case for me. There is no rush either way, and you can continue to see how your feelings evolve over time. Best wishes to you.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 12/1/2017 AC Surgery 4/1/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 5/1/2018 External: Lymph nodes, Chest wall Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Oct 7, 2020 12:00AM sbelizabeth wrote:

After the chemo, amputation, radiation...all of the treatments designed to save my life but irreversibly scar my body...I couldn't wait for my DIEP surgery. Reconstruction was designed for HOPE. A treatment to restore some wholeness. A recognition that cancer had stolen something, and in its imperfect way, medicine wanted to help me get it back.

Everyone's different, and many women are completely ok with being half-flat or entirely flat. My mom loved the freedom of being flat. I had a unilateral mx, for medical reasons, and lived with it for a year until the radiation-damaged skin settled down enough for DIEP. I went into surgery apprehensive, but with my heart singing. I'm happy with the outcome.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Oct 7, 2020 03:58PM suzopedia wrote:

I am trying to schedule a mastectomy and I'm not sure about reconstruction. I don't think I want anymore complications. I did want to mention a website I found. ""

It's a group of women that make bras that have pockets for pads. The woman in charge of survivor relations has had a BMX. They tell her story on the website. The whole site is very caring and nurturing. I am ordering a couple of bras today. I want to try them on before my UMX.

Dx 1/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+, HER2- Surgery 2/25/2005 Lumpectomy Chemotherapy 3/1/2005 TAC Radiation Therapy 6/1/2005 Whole-breast: Breast Hormonal Therapy 8/1/2005 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/24/2020 Lumpectomy: Right Dx 7/27/2020, DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+ Surgery 9/22/2020 Lumpectomy: Right Dx 9/27/2020, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+
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Oct 7, 2020 04:04PM MinusTwo wrote:

Suze - there are several threads on BCO about going & staying flat. Check the search section.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 13, 2020 11:32PM GardenWalker wrote:

Hi Hope, Same here to all you described, bilateral mastectomy without reconstruction in 2013 after second hormone driven relapse, tumors in both breast. Decided on no reconstruction due to adverse reactions to all anesthesia & severe allergies to latex, rubbers, silicone, Surgical sutures, etc. I missed & mourned my breasts, hid body from husband, still do a little. But I am well, in a second long term remission (first diagnosed in 1999) enjoying life & 3 precious grandchildren. I got cute frilly nighties for husband, and wearpretty shirts with ruffles, pockets, scarves, which are fun. Time healed and I remember breasts with fondness, and am thankful. Stay well and safe Hope and take care to all my fellow sisters.

Surgery 1/3/1999 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 1/4/1999, ILC, 2cm, Stage IIB, Grade 2, 14/14 nodes, ER+/PR+, HER2- Chemotherapy 1/31/1999 AC + T (Taxol) Radiation Therapy 7/29/1999 Breast Hormonal Therapy 7/31/1999 Surgery 1/9/2000 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 2/1/2000, IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Radiation Therapy 2/26/2000 Breast Hormonal Therapy 8/31/2006 Femara (letrozole) Dx 9/12/2013, ILC, Right, 2cm, Stage IIIB, Grade 2, 0/0 nodes, ER+/PR-, HER2- Surgery 9/29/2013 Mastectomy: Left Surgery 9/29/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Dx 9/30/2013, LCIS, <1cm, Stage 0, 0/0 nodes, HER2- Hormonal Therapy 11/9/2013 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole), Liquid tamoxifen (Soltamox)
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Oct 15, 2020 06:11PM cake8icing wrote:

Hi Hope: I understand. My surgery was 7 months ago and for me, it is how my husband, who was so supportive of my getting an MX with no reconstruction, it is how he is just not coping with it. He will never say it out loud...he is still as loving and supportive as he ever was. But he cannot bear to look at me naked. I can see it in his eyes. Because my sister and 3 other women I know had major complications from reconstruction, I will not go there. But I do mourn the loss of my breast. I agree with all the other women here that counseling could help. Does your insurance company offer support? United Healthcare had an amazing nurse assigned to me to assist me through my journey, and a recommendation to a trained therapist in their network was offered to me. Check it out with your insurance company; it could be a good way to find the right psychologist to assist.
Dx 2/14/2020, DCIS, Left, 3cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/19/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Oct 15, 2020 07:01PM msphil wrote:

helli sweetie we Are here fir you here is some of my story to help and Inspire. I prayed for a special man to cime into my life after a divorce tool awhile but the summer of 93 i met him We started dating meeting his family then starting datingbtalking bout getting married both our second. Then i found lump in shower working in medical field i spoke to doctor at work got biopsy waiting and so nervous. Then got phone call cancer drop to my knees crying out Not Now found man of my dreams. Called him at work came right away supporting me. How can i go inti new marriage with one breast him saying i dont care bout your breast i love You. So i had mastectomy with reconstrution then as we watched t v before Christmas i got high fever 104 chest so tight had only one filling in expander. Fiance took me to ER took me right into surgery to remove it my body had rejected it as foreign body..From then on wear a prothesis and im doing great. Been 26yrs this yr and also our Anniversry too . Hope and Positive thinking that i will get thru this helped me. HOPE this helps Inspire You sweetie. Hugs. msphil idc stage2 0/3nodes 3mo chemo before after Lmast then married then 7wks rads and 5yrs on Tamoxifen.

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Jan 21, 2021 05:52PM Jaybird627 wrote:

I don't see much discussion on these boards about coping with breast loss and no reconstruction. I read that many make that choice at time of MX/MBX and are 'happy' with that choice but many of us are 'forced' to not reconstruct and are NOT happy with that situation.

After my 2nd BC it was suggested I do a BMX (lumpectomy, chemo. rads 1st time) as I am BRCA2+ and I agreed as I didn't want to risk a 3rd BC. I did nipple sparing and expanders. My 1st side won't accept an expander (wound issues) and after a lat flap am now forced to be mostly flat on one side and lost that nipple. Can't do fat grafting because I have no fat.

I am now seeing a psychologist because of my body image issues. She's going to help me I'm sure but it sure is hard to accept.

If anyone has links to further discussions about non-acceptance of being flat please post them. Thanks!

J ~

Jaybird. My hopes are not always realized, but I always hope - Ovid. Surgery 3/4/2005 Lumpectomy; Lymph node removal; Mastectomy; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Dx 3/5/2005, IDC, Right, Stage IIB, Grade 2, ER+/PR+, HER2-
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Jan 21, 2021 11:10PM MinusTwo wrote:

JayBIrd - so sorry for your troubles. Yes, if nothing else our culture has 'trained' us that breasts are vital.

I couldn't keep my nipples because the margins were too close. I hated that. 10 years out this year, I still feel funny looking in the mirror. I also still miss that the nipples were a major stimulus point for me.

Hope that the psychologist helps. And hope others post about their difficulties instead of just their elation.

I'll keep you in my thoughts.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 21, 2021 11:19PM sbelizabeth wrote:

Jaybird, have you considered looking into NOLA--the Center for Restorative Breast Surgery? They apparently are miracle workers, especially with failed recon attempts in the past.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 22, 2021 10:42AM Beesie wrote:


I don't think you are nearly as unique as it may seem. Two reasons for this.

First, if you read the studies on satisfaction with MX results, with or without reconstruction, the conclusion is usually that the majority of people are happy with their choice of surgery and with the results. But the majority isn't everyone. Even the most recent study posted by BCO says that "Nearly 75% of women surveyed who opted for no breast reconstruction after mastectomy were satisfied with the results", which means that 25% of those who opted for no reconstruction were not satisfied with their results. That's a lot of women. And that doesn't even get into the issue of those who would prefer reconstruction but couldn't get it - people like yourself.

But why don't we hear from these people? Well, that's the second thing. I think there is pressure on us to be happy with our choice and with our results. Some of it is external. I think there is a feeling within the medical community and the non-cancer community (our families and friends) that we should be pleased that our cancer was treated and we are healthy and somehow complaining about physical appearance is focusing on the wrong thing and not looking at the big picture. Get over it and move on. And some of it is internal. While a few of us have no choice but to have a MX, most patients who have a BMX are making that choice for themselves - they could have had a lumpectomy + rads or they could have had a UMX, but they have opted to have a BMX. There may be very good reasons for that - I am not questioning the decision - but if someone chooses to have such a significant surgery, how likely are they to openly and publicly say "that didn't work out the way I thought and I'm not happy with the results"?

When I was diagnosed back in 2005, although I had a teeny Stage I diagnosis, I had extensive high grade DCIS, and a MX was my only surgical option. I did not want to have a MX - it was not what I would ever have chosen for myself. I had successful implant reconstruction but it took me years to get comfortable with it (on-going brutal phantom itching certainly didn't help). What I noticed back then, and what I posted about quite a bit in those days, was the fact that there seemed to be two very separate groups on this board when it came to discussions of MXs and reconstruction results. Those who could have had a lumpectomy but opted to have a MX (usually a BMX) where almost universally happy with their results, whether they chose to go flat or have reconstruction. Those like me who never wanted to have a MX but had no choice - we were a lot more open about our problems and dissatisfaction. And here again, this doesn't even get into your situation, where you were effectively forced to have the BMX (as the most logical surgical choice after a 2nd diagnosis, and with the BRCA mutation) and your reconstruction failed.

I have been looking for studies and research on this subject. Not much yet, but a few studies, most of which unfortunately I can't fully access:

Psychosocial Functioning in Women with Early Breast Cancer Treated with Breast Surgery With or Without Immediate Breast Reconstruction

"There were 303 early-stage breast cancer patients: 155 underwent BCS (breast-conserving surgery), 78 MA (mastectomy alone), and 70 IBR (immediate breast reconstruction).... breast satisfaction was highest in BCS (72.1, SD 19.6), followed by IBR (60.0, SD 18.0), and MA (49.9, SD 78.0) at 12 months, p < 0.001. Immediate breast reconstruction had similar psychosocial well-being (69.9, SD 20.6) compared with BCS (78.5, SD 20.6), p = 0.07.


Our study found that in a multidisciplinary breast cancer centre where all three breast ablative and reconstruction options are available to early breast cancer patients, either BCS or IBR can be used to provide patients with a higher degree of satisfaction and psychosocial well-being compared with MA in the long-term."


Health-related quality of life following breast reconstruction compared to total mastectomy and breast-conserving surgery among breast cancer survivors: a systematic review and meta-analysis

"Sixteen of the 18 eligible studies with BR (breast reconstruction) (n = 1474) and BCS (breast conservation surgery) (n = 2612) or M (mastectomy) (n = 1458) groups were included in the meta-analysis. The BR group exhibited a better physical health (k = 12; 0.1, 95% CI 0.04, 0.24) and body image (k = 12; 0.50, 95% CI 0.10, 0.89) than the M group. However, the two groups exhibited comparable social health (k = 13; 0.1, 95% CI −0.07, 0.37), emotional health (k = 13; −0.08, 95% CI − 0.41, 0.25), global health (k = 7; 0.1, 95% CI − 0.01, 0.27), and sexual health (k =11; 0.2, 95% CI − 0.02,0.57). There was no clear evidence of the superiority of BR to BCS for all the six domains. These results suggest that HR-QoL outcomes in BR and BCS groups are better than the M group. Therefore, women opting for BR or BCS are likely to report fairly better HR-QoL outcomes than M."


Effect of cosmetic outcome on quality of life after breast cancer surgery

"QoL outcomes, including for social and role functioning, fatigue, pain, body image, and arm symptoms, were significantly better in the BCS (breast conserving surgery) and TMIR (total mastectomy with immediate reconstruction) groups than in the TM (total mastectomy) group (p<0.05 each). BIS (body image scale) was significantly better in the BCS than in the TM or TMIR group (p<0.001 each). In the BCS and TMIR groups, general QoL factors were not significantly associated with objective cosmetic outcomes, except for body image in the QLQ-BR23. In contrast, patients with poorer BIS score reported lower QoL in almost all items of the QLQ-C30, BR23, and HADS (p<0.05 each).

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Jan 22, 2021 12:29PM izzy16 wrote:

hi Jaybird,

just a thought... have you tried hyperbaric oxygen on the side that won’t accept an expander? you should qualify for it if that side was radiated or maybe bc it has wound healing issues. Worth a try if you’d like to reconstruct that side. And women here report that the stem cells in the fat helps wound healing... you may not have enough for a breast but if a small amount for wound healing maybe you could eventually try an expander again, all the while in hyperbaric oxygen. You could also ask about / research exosomes if they’d help wound healing or not but with cancer I’m not sure effects and obviously don’t want to risk cancer cells growing.

Hang in there and hope there’s a solution out there to help you heal. When you find it i could use it myself!



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