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Topic: Anyone regret going flat?

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: Aug 23, 2019 10:03AM

StAuggie wrote:

I'm finishing up chemo next month and will have to make a final decision about whether or not to do reconstruction. I'm planning on having both breasts removed. I do not want implants, so I'm choosing between going flat or DIEP fat grafting.

A few weeks ago, I was just fed up with the whole multiple surgery, lengthy recovery idea and just wanted to put cancer behind me, so I decided to just go flat. My concern is how I am going to feel later. I realize that no one can tell me how I'm going to feel about having no breasts, but I don't want to make the decision to go flat and then regret it later; from what I've read, its better to start reconstruction right away or at least leave skin, if they're able to, and then have it later.

If I go flat, I would probably wear some type of prosthetic to give the appearance of having breasts, at least in public. Not sure that I want to mess with the hassle of prosthetics, but in all honesty I don't think I can be comfortable without them in public. I just keep going in circles and haven't been able to come to terms with either option.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/9/2019 AC + T (Taxol) Surgery 10/29/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 24, 2020 09:46PM divinehandmaiden wrote:

NOPE! 😁

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Feb 24, 2020 10:08PM - edited May 26, 2020 04:20PM by divinehandmaiden

I was supposed to be reconstructed after surgery 5 years ago. However, the surgeon ended up taking more skin on my right side than was originally planned, and I was informed later by the plastic surgeon, that he didn't have enough skin to work with!

Really? This was a heck of a way to find out my whole future was being radically changed! However, a week later after thinking more about it, I decided I didn't want to be in my mid-seventies for my first implant replacement! Lol.

Furthermore, I thought back to my childhood days with my brother and his friends and remembered how envious I was that they could take their t-shirts off in the summer and I could not!

So I tried it out, and made the best of it. I very soon found out however, that instead of people seeing my flatness, they simply thought I was small chested. And guess what? I let them!

I continued wearing my bustiers, my tube tops, my flowing skirts, backless dresses, and all of it. And I never found people staring at my chest! 😎

last year, when I found out my breast cancer has metastasized to my bones, I took up a brief stint in modeling as therapy for dealing with its return.

As part of an October awareness issue of a local magazine, along with a 6 page article I wrote about my journey for others to read, I did my first flat photos which you see above. I'm very proud of this photo in particular. After all, it's not too shabby for a 62 year-old huh? 😉.

I will tell you this: you will need to get used to being comfortable with yourself whatever you choose. I have since found out many things about implants I did not know. For example, I would have never thought that implants felt cold! I would have assumed you felt them like you used to when you had breasts! I have also come to appreciate that whatever kind of reconstruction you end up doing, the breast you end up with, rarely looks like you're real breasts used to. You may have problems with dimpling, infections, and you won't have any nipples unless they're tattoed on for you.

These are some of the MANY details many women don't consider when they think: oh GOOD! I'm going to get new boobs!

Whatever you decide on, artificial breasts most likely won't be like the ones you imagine...

If you read on a bit more and into some of the other forums, you will also see a huge movement now of women who have suffered with leakage of silicone into their systems and have developed many many serious issues and illnesses. These are all things you need to research really well before you make your final decision so that you are truly making an informed decision, and not one based on what you might simply imagine your life to be, going forward with implants.

In the end, it comes down to what matters most to you with your own body image, and how you think you will be perceived by others, including your intimate partner.

I did not have one at the time of my mastectomy, nor did I ever marry unfortunately. However the one boyfriend I did have within the last 5 years? I didn't even have time to worry about it to be honest. Things happened rather quickly and frankly, I never looked back! What I can tell you is that I was more than pleasantly surprised that the issue of being flat-chested never came up, and when it finally did, my boyfriend was totally supportive! For the longst time, it was simply a non-issue which was both great and amazing at the same time!

These days, when I think of going bare chested anywhere, whether a doctor's office or wherever else might be appropriate, I think more about the other people who may have never seen a flat-chested woman or well healed surgical scars. I try to remember that even though most are healthcare providers, they may have never seen a chest like mine before. So I remain as modest as I can, but more for them... not for me!

I am totally comfortable with my body and in fact, I love it! I have never looked back, or regretted my decision. And I know now, it was the healthiest decision I could make given that it wasn't what I originally planned on. Instead, I was given a '"gift"...in disguise.

I hope whatever you decide is best for you, that you will come to love your new body too!

Be Healthy, Happy, and Blessed,

Melisa



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Feb 26, 2020 10:02AM akmom wrote:

Just want to say thank you, Melisa, for your thoughtful and helpful post. It was surprising to me also that people don't seem to notice my lack of breasts. I have never seen anyone staring, and if I mention my BMX in conversation to new acquaintances they are usually quite shocked, as it is apparently not obvious (I never wear the prosthetics that I bought). I am sure your words (and wonderful photo) will help other women make informed decisions about reconstruction.

I would only add, if you are given the option to have a plastic surgeon “finish off” the MX, I would recommend that you take advantage. I am going in for scar revision surgery after the fact, to clean up some flaps and bulges left by the general surgeon. In hindsight I would have had the plastic surgeon do the necessary at the time of my BMX (either way the cost is covered by our medical services plan here in Canada).

Good luck to all dealing with this decision xx

Surgery 2/11/2012 Lumpectomy: Right Dx 2/24/2012, DCIS, Right, <1cm, Stage 0, Grade 2 Radiation Therapy 4/9/2012 Whole-breast Dx 8/14/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 8/14/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/14/2018 Mastectomy: Left, Right Hormonal Therapy 9/10/2018 Femara (letrozole)
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Feb 27, 2020 06:34AM helenlouise wrote:

I agree akmom, I would have a plastic surgeon tidy up. I had BMX, prophylactic on one side and there is excess skin there. My affected side is almost concave with a bulge on the upper quadrant. Admittedly I have had a surgical biopsy that didn’t heal well since. So that doesn’t help.

I am also glad I went flat because since my BMX I have had two recurrences on the scar line and would not have been able to wear a prosthesis, had I had a UMX. Moreover I would hate to think of the mess if I had had reconstruction.

So all up I have been lucky with my choices and I agree, people just think I am small. I wear a Lorna Jane pamy top that has small soft inserts. Even when I was dealing with negative pressure bandages I could still wear that to give me a little shape.

I agree it is a very personal choice. There is no right or wrong, except in your own mind.

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Mar 6, 2020 07:30PM stokerfan wrote:

I only had my right breast removed and plan on not having it reconstructed. So half of me will be flat. I don't regret it. After reading about the types of surgeries that can be done that is when I made my decision not to do it.

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Mar 7, 2020 05:46PM ckrm wrote:

I have decided to have prophylactic bilateral mastectomy at the end of the month. I am also struggling with my decision to go flat. My plastic surgeon told me that I do not have enough tissue on my abdomen or legs to take for flap surgery. I was devastated because that was what I had decided to do and now I'm going to be stuck with nothing there. I have read some of your posts and agree that it isn't worth the risk of implant illness. I'm definitely in mourning already and am concerned about regrets. I want to thank all of you for your inspirational posts. I'm finding much comfort in knowing there are so many others out there who are experiencing this with me.

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Mar 7, 2020 06:28PM - edited Mar 10, 2020 04:51PM by Moderators

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Mar 7, 2020 09:09PM alto wrote:

ckrm, I'm sorry there isn't a good reconstruction option. I remember how much it sucked to come to that conclusion for myself, but you just have to do what's right for you, and not blame yourself for or regret things that aren't within your control. Getting/staying healthy is the most important thing.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Mar 7, 2020 11:14PM ckrm wrote:

Dear alto, thank you so much for your support. I'm really struggling. I know they have to come off because my mother and older sister died of breast cancer and I have the ATM gene mutation, so it's only a matter of time. I want so much to be in a happy place with going flat. Hope I'll get there before the surgery. Putting my trust in the Lord and praying for peace and acceptance. Thanks again and God bless you

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Mar 8, 2020 07:43AM helenlouise wrote:

Ckrm, it is devastating losing your breasts. The day of my BMX I cried but once done that was it. Done. I had already decided to go flat so I didn’t not have to deal with disappointment of no reconstruction. That must be hard. I don’t like having no breasts but am ok with being flat now. I wear a pammy bra by Lorna Jane and it has small inserts that give me a little shape. I am concave on my affected side but feel quite ok as long as that doesn’t show. Girlfriends have said but you weren’t big before. I was actually double D so I wasn’t as flat as I am now. Not sure of your age or stage in life but for me at 60 it is not a big issue in the scheme of things. More important that I’m healthy. Bonus was I have had recurrence so recon or UMX would have been more difficult. I hope you can come to terms and that your BMX and recovery go well. Thinking of you.

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Mar 8, 2020 08:37AM Spookiesmom wrote:

I’m not sorry I went flat. Told BS at first consult both had to go. So they did. No more surgeries, risk of infection, pain, copays etc. Done. Didn’t prevent recurrence in nodes on other side, again, less surgeries involved.

My only gripe is, I get called sir a lot. My hair is extremely thin, and short. I’ll probably be bald in a year, thanks to ibrance and letrozole. Too hot most of the year for a wig.

But that’s my only gripe, thankful I’m alive to complain about it.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Mar 11, 2020 12:34AM Kat333 wrote:

ckrm When diagnosed, left breast, I thought about options and felt bilateral mastectomy, to achieve symmetry, was the right decision for me. It has been six months, since surgery, and all has healed well with no issues. I have no regrets going flat, do not wear a prosthesis, and feel comfortable out and about. You're in my thoughts and will make a decision that is right for you.


Dx 9/27/2019, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery Mastectomy: Left, Right Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 14, 2020 03:09PM - edited Mar 14, 2020 03:10PM by alto

ckrm, I don't know if you will feel happy going into the surgery. I hope you will, but if you don't, that's probably normal - the feeling I had was more resignation and a little bit of fear. In spite of that fear, I told myself I would muster my courage and get my damn self in the car that morning, and get it done because it was what I had to do. And I did it, and it turned out okay. The healing and acceptance comes. I remember being impressed with my body's ability to heal and adjust.

Afterward, I got used to my new body and I love it just as much, maybe more now. This stuff shifted my priorities in a good way. A year out, I feel badass and pretty.

(Please pardon my cursing, if it offends. Cancer makes me sassy sometimes.)

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Mar 26, 2020 11:23AM Lezza13 wrote:

I'm going on 7 years and have never regretted my decision. It's a personal choice, but I have enjoyed the freedom.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/16/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 27, 2020 03:22PM rljes wrote:

Me Too Lezza13. Although I might look into some tattoo'ing in the future.

Finished Chemo March 2018, No reconstruction "Going Flat" Dx 6/26/2017, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+ Dx 8/22/2017, 1/7 nodes, HER2+ Surgery 8/22/2017 Mastectomy: Left, Right Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy
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Mar 29, 2020 09:22AM Lezza13 wrote:

riles If the tatoo works for you, then go for it. There might be a thread for that. I am now thinking of donating all of my forms and bras as well. Haven't worn them for years. Best of luck.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/16/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 29, 2020 09:23AM Lezza13 wrote:

alto I love your attitude BTW. I thinks it's great! You could not have said it any better. I totally agree.

Dx 12/30/2011, IDC, <1cm, Stage IIA, Grade 2, 2/23 nodes, ER+/PR+, HER2- Surgery 2/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/16/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 30, 2020 11:23AM windingshores wrote:

I went flat 5 years ago and don't wear prostheses. For those of us who are older (and single) I don't think there are many issues. I had a little trouble finding a bathing suit that was comfortable (Lands End makes one for those of us who had BMX with no reconstruction). I feel fine with my flatness.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Mar 30, 2020 03:00PM BlueGirlRedState wrote:

ckrm - I do not regret not having reconstruction. The decision is very personal, and each woman will think/feel differently. The bilateral was 3 years ago. When I was showing another survivor how cap rotation worked with cold capping, I told her I was nearing 60, and did not feel the need to. She replied that she was 65, and was definitely having reconstruction. That said, I went the full circle. I met a woman, who went through this in her late 20's/ early 30's, and she was very happy with her DIEP. After consulting with a local surgeon, I was not excited about the plastic option. She said the DIEP Flap was not available where I lived, and gave me several referals where it was availalbe. The surgeon I saw ,thought that I was not a good candidate for DIEP (not enough of the right kind of fat in the right places). I also found out that the surgery was more extensive with a longer recovery time than plastic. So Iopted to go flat. I am still shy in the locker room, and usually change in a bathroom stall. Wishing you well during these very difficult times.

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Mar 31, 2020 11:40PM msphil wrote:

hello sweetie I was diagnosed while planning our wedding so I decided on reconstruction at time of surgery But my body rejected the expander after just one filling had high temp and expander in my chest very hard felt couldn't breathe. Decided to stay flat and been wearing prothesis in bras and swimsuits so glad I did. Praise God I'm a 26 yr Survivor this yr. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast cytoxin adriamycin and 5fu then got married and then 7wks rads and 5yrs on Tamoxifen. Take care

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Apr 10, 2020 10:51PM CCGirl wrote:

I love the tattoo picture! What a great idea! I, too, have gone flat. Still healing from the BMX a little more than two weeks ago. Not doing reconstruction was an easy decision for me. My sister went through three rounds of surgery to try to reconstruct her breasts. Each time, it failed. During the last one, she almost died from sepsis. When I was diagnosed again last month, I talked to a plastic surgeon, but opted to skip the reconstruction. I’d rather have a tattoo :)

Dx 11/22/1998, IDC, Left, 1cm, Stage IA, Grade 1, ER+ Surgery 11/22/1998 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 2/1/1999 Whole-breast: Breast Hormonal Therapy 3/1/1999 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/11/2020, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/25/2020 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 5/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 21, 2020 02:40PM StAuggie wrote:

I appreciate all of the insight and responses given. Thank you so much. It is such a personal, individual process. It's been a long time since I posted here--a lot has happened, and I wasn't really ready to talk about it.

So I opted for bmx, with immediate reconstruction, and had the surgery Oct 29. Tissue expanders were placed; it was an uneventful surgery and recovery started off well. I was on celebrex and a prophylactic antibiotic.

About 10 days later, I had chills that I couldn't get rid of, and I was very out of it and confused. My husband took my temp--it was over 103. He looked at my incisions, and the right incision was infected. My PS directed me to the ER, and I was admitted with Sepsis. It was Pseudomonas, but thank God it was a strain that responded to an antibiotic. Infectious diseases visited me--what!! They recommended that the tissue expander be removed, because bacteria can hide behind it and not show up in bloodwork, and then re-appear after the antibiotics are stopped. Back into surgery and had the right expander removed. The sepsis really knocked me off my feet. I have no idea how I contracted it.

Fast forward two weeks, and my left incision is not healing and turning necrotic. My body is just having a difficult time healing. Back into surgery, left expander removed to avoid infection, necrotic tissue removed.

Three surgeries in six weeks, and sepsis. Uff da. You sign all the paperwork that warns you about the complications, but you don't really expect that you'll be the one having those complications. November and December were pretty tough emotionally.

My incisions did not heal and fully close until the third week of January. My PS recommended that we wait a bit on reconstruction until my body got stronger. I was scheduled for some fat grafting at the end of March, to begin the process rather than jump into tissue expanders. Canceled due to Covid.

I mourn my breasts. I know that I made the best decision for me, for what I felt was best for avoiding future breast tumors forming and dealing with breast cancer again--Triple Neg grade 3. I did have the option of lumpectomy or single mastectomy. I didn't want to take a chance of it coming back. But I miss my breasts. I hate my concave chest. I miss having nipple sensation. Well, any sensation through the whole area; it's pretty numb. I am so sad that they are gone, even though I have peace with my choice.

I had planned to be done with reconstruction by now. Figuring out what to do about swimming seems like an overwhelming thing. I have a pair of knitted knockers that I wear, and right now being home most of the time I go braless. But it seems like a terrible idea to swim without breasts, so I have to figure that out. It appears as though I am a bit of a mess right now. :)

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/9/2019 AC + T (Taxol) Surgery 10/29/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 22, 2020 09:18AM helenlouise wrote:

Oh St Auggie, you have been through the mill! No wonder you haven’t been posting. Too much surgery and trying to recover! I am glad you have been able to let us know what has happened.

I agree we sign the forms but never really expect that things will go wrong and in your case several things. I went flat with no plan of reconstruction and like you miss my breasts the same reasons. It is a grieving process. Your sadness is amplified because you thought you would have your reconstruction by now.

I am not a big person and was a D cup prior to BMX. I now wear a Lorna Jane Pamy bra which has a little insert that gives just a bit of shape (totally hides the concave). I couldn’t get the knitted knickers or other soft forms to stay where I wanted them and felt very obvious. Something like the pamy bra might help you for swimming for now.

Hang in there and post again to let us know how your traveling. X
Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Apr 22, 2020 10:24AM StAuggie wrote:

Thank you helenlouise! It has been a most unexpected journey, for sure.

I used to fight with the knitted knockers-- they kept rising up in my bra. It was terrible. But then I took some safety pins, and anchored them where I wanted them to stay, and I don't have to deal with them moving up any more. It's a pain to switch bras, but really only takes a minute or two to get them fastened. It's a huge relief not to have to worry about them coming out my neckline!

I still don't know what to do about swimming. I don't like to buy clothes online...I need try them on. We have a big above ground pool, and I put one of my suits on-- they all have the formed cup-- and it just looked terrible. I put a t shirt on over my suit. I know there are many women who just go flat and don't care, but that's not me. I was terribly self conscious and I was alone in the pool. Yes, I obviously have body issues lol. I just don't even know where to begin to get swimming inserts, especially with everything closed up. Gah. I hate this.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/9/2019 AC + T (Taxol) Surgery 10/29/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 22, 2020 10:49AM Spookiesmom wrote:

The beaches in your area are open, stupid govenor, but they are. Do you feel comfortable enough to go, see what maybe other women are wearing, doing?

I’m flat, have been 8 years. Was going to do Silver Sneakers pool exercise class. Was told I could just wear a tshirt. I think as time goes by, you’ll find ppl don’t notice much if you don’t have boobs. And if they do, that’s pretty rude.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Apr 26, 2020 05:04PM StAuggie wrote:

People in our area--we live on the East coast of FL-- are behaving well on our beaches. Our county has maintained low rates from the beginning.

This isn't really about how other people will see me. I know when I go, I don't pay attention to how other people look. We are busy living life.

This is about how I see myself. I have a few suits, and two of them don't come high enough to hide my concave lumpy chest. The one that does, looks very misshapen but has ruffles to sort of look ok with a uv shirt on over my suit.

I tried bath poufs in my suit but the ones I have are too big. It was an interesting sight! 😂😂

I ordered a pair of swim knitted knockers-- to try and see if they will work for me.

I got the call yesterday that our hospital is opening up outpatient surgery, so I am scheduled soon to go in for fat grafting. That will help some, I hope. I know these are my own body image issues. It bothers me terribly even in our own, privacy fenced in back yard pool. I never had large breasts-- just a B cup. And I was fine with that, but they're gone. I didn't even know that swimsuits were going to be such an emotional issue for me, until it was. :)


Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/9/2019 AC + T (Taxol) Surgery 10/29/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 26, 2020 05:16PM Spookiesmom wrote:

Just a heads up, there will be a space shot May 27. Brevard officials are asking ppl not to come. It’s a manned shot.

Hope you resolve your suit issues, it can be rough. I’m on the west coast.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Apr 27, 2020 12:06AM Doggielover73 wrote:

St. Auggie, I was searching for a post like yours because I have a very similar story with very similar feelings. I had a lumpectomy with bilateral oncoplastic reduction in prep for a nipple sparing mastectomy on 3/11, delayed healing pushed surgery to 3/18. Had mastectomy on Wednesday 3/18, home health nurse saw some necrosis by Friday morning, fluid leaking from incisions by Saturday and expanders removed on 3/27. PS thought he was performing surgery because of necrosis but found bilateral infections when he went in and had to remove the expanders. This was NEVER an option we had discussed because he never mentioned the possibility of infection, only the necrosis so the options were to clean up and leave the expanders as is (which is what I was hoping) or having to remove from above the muscle and put them under the muscle. When I woke up from surgery, I kept asking which had been done and no one would tell me, I swear I asked what felt like a million times! Of course, because of COVID, I was alone and my husband wasn't with me to give any info. You can imagine my shock and surprise when the surgeon walked in and told me what had happened... and that I now had nothing, i was completely flat and in pain from the surgery, infection and drains which my body hated and was desperately trying to kick out.

Fast forward to today... I had a whole host of other "issues" while I was healing and now I dont know what to do. Much like you, I had planned to be completely finished with the reconstructive process by the beginning of summer and instead am left with serious PTSD from 3 surgeries in 8 weeks with many complications along the way. I fear having another surgery that will require drains/expanders again and the possibility of winding up in the same situation! I was never overly attached to my breasts, but now that they are gone, I'm not sure I can live without them forever. I went back to work early last week, but luckily, haven't been confronted with wearing work clothes since we are all working from home. I started looking at bathing suits online and it only makes me sad because they dont look like anything that I'd ever wear. I feel your confusion and pain.

Dx 12/13/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 1/27/2020 Lumpectomy; Reconstruction (left); Reconstruction (right) Surgery 3/18/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 28, 2020 05:24PM alto wrote:

Just wanted to share one swim hack I read about online: using bath puffs to fill out the pocket-bra. I would expect they would take on some water, and you'd want to rise slowly from the water to let it drain out without being noticed. But I must confess, I haven't been a big swimmer since my teenage years, so I haven't tried it.

Sending you love and good vibes - going through cancer, surgery, complications and a pandemic... well, just one of those is tough enough.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right
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Apr 29, 2020 12:55PM Angelanotangie wrote:

Hi everyone, so glad I found this topic. I am relating to so many things. I was/am a B cup before and had been told most of my life that if only I had bigger breasts my body would be perfect. I was first diagnosed with only DCIS, so when I read up on it I expected to only have a lumpectomy and radiation. Plus, I never felt any lump so how big could it be?? (I have very dense breasts.) 2 weeks later, at my first BS appointment, I found out that I not only had DCIS, but also a 3x4 cm mass that was IDC. Lumpectomy was no longer an option, and although they kept saying it's slow growing/nonaggressive it was already in my lymph nodes. Had UMX and ALND almost a month ago.

At first, I thought I could never live without breasts. I met with the PS and when he told me all the possible complications with implants and radiation, I chose to do delayed reconstruction (and with the Covid now I would have had to wait anyway). Again, at first I was devastated. But then, as I read more about the DIEP (he won't do implants for delayed reconstruction, plus I didn’t really want implants anyway), I started thinking that it's just not worth it. I had decided early on to remove the left breast at the time of reconstruction, and now I'm thinking I will just get the right side "cleaned up" and stay flat. It's obviously early in the process for me and with chemo through 9/15 and radiation to follow, I have plenty of time to think about it.

I want to give a little advice about swimming and padding in general. There's a company called Handful that makes sports bras and workout clothes. Their motto is "designed to flatter, not flatten" and I have been a fan for about 12 years (when they only had 2 colors and one style). I'm an even bigger fan now. They offer a lifetime 30% off ALL items, (not just bras) and free extra pads for any BC survivors. Cary Kim is a double flat survivor and has a great video on how to use their lightweight foam pads as prosthetics. Their bras are safe for swimming and provide good coverage without looking old fashioned. I can't use a pullover style bra yet but I am using their pads in my cheapy front hook sports bras that I'm using right now. I was also dreading swimming (my husband has been trying to cheer me up with plans for a beach vacation after all this, plus we have a pool). I don't know why I didn't think of it before. They have a shelf bra cami that would be great for that.

Good luck to everyone and thanks for walking this road before me.

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy

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