BS is pushing me toward recon after BMX though I don't want it

OptimisticbyNature · May 2016

I'm planning to have a BMX to treat DCIS. My BS is in agreement with the BMX but does not agree with my desire to go flat (I'm currently a D cup). She thinks I will become depressed and regret my decision because she sees a lot of patients who identify with their breasts. She admitted she is pushing me toward recon for that reason. While I do like my breasts, and will grieve their loss, my gut feeling is that reconstruction will not help with that grief. I've read a lot about multiple procedures, complications and pain involved with implants or DIEP. I'm not really interested in breasts that look attractive but don't have any feeling. My BS and PS are both pushing me toward reconstruction. They both say that I am "too young" (55) and my BS says I will have unsightly "side boob" or "dog ears" due to excess tissue (she calls them 'love handles'). I am 5'4" 160 lbs. BMI 27.5 so I'm overweight but not obese. I just think this is something they should be able to fix. I can insist on no recon but since they are resistant I am concerned about the outcome. Has anyone else gotten push back on wanting no recon? Has anyone had an unsightly result with no recon? I can't find any pictures online of what it would look like. All the "no recon" photos I find are of thin people (who look great!).

dtad · May 2016

Hi there. So many decisions involved with this horrid disease! I totally respect you wanting not to have reconstruction. However I am concerned about what the docs are saying about a bad outcome. Dealing with no breasts is one thing. Thats something only you can decide. Maybe you could get a second opinion. Preferably at a university based teaching hospital. Good luck and keep us posted....

AmyQ · May 2016

Just my two cents, there are no guarantees of a totally fabulous and pain-free reconstruction. I wish I never went down that road. I had five surgeries in one year and in the end went flat. I love my prosthetics and can be whatever size I want to be depending on my day, clothing, etc.

If I didn't have Truncal lymphedema, I'd have had a beautiful colorful tattoo to make me feel better about the scars but oh well, I'm happy to be living a good life.

My PS really pushed me to recon, saying none of my clothes will ever fit right...what a bunch of crap. Whether I have boobs in or not my clothes fit just fine. I wish I had awakened to his financial interest in my recon a lot earlier. It would have saved me a lot of time, money and pain.

Please understand, I'm not trying to convince you, I'm merely giving you my experience. Good luck

Amy

PS I think a second opinion is in order. I believe a doctors role is to provide options but not strong arm you into their way of thinking. Seems all too self-serving in my opinion to state otherwise

debiann · May 2016

I was 53 at dx. I almost went flat. I feared surgery and all the possible complications. I thought I would be fine with it, but one day while waiting at a counter in an office I found myself staring at all the women's breasts. Noticing the cleavage and the way clothes hang on them and imagining what it would be like when I had none. I felt very jealous.

After that experience I knew was going to always feel a loss if I didn't try reconstruction. After thinking it through one more time I came to the conclusion that I work hard to have a job with good insurance that would pay for it all, I am fortunate to live in an area with access to excellent doctors and hospitals. In my case, the only thing holding me back was fear. I realized I will always feel I lost part of me because I was afraid.

So I went for it. I knew I would hate the feeling of implants, so DIEP was the best choice for me. It's not easy. I had two revision sx. There are risks. BUT I love my new breasts. They are pretty. I look good in clothes. I look good naked, even though I don't have nipples yet. Surprisingly, more and more feeling keeps coming back. They are still "useful" in the bedroom. I can feel touches and kisses on them (although the belly area is still pretty numb, but it's so nice to no longer have a pouch I don't care.)

But that's just my story. Many women are very happy being flat and there is nothing wrong with that choice.

If you think your want to leave the door open for future recon, they can do an mx now and leave some extra skin. If you definitely want no recon a PS can improve the area, even do some fat grafting to the hollow areas so that you don't have divots.

I think a second opinion would benefit you. I saw two different PS and it was very helpful.

Moderators · May 2016

Hi OptimisticbyNature, and welcome!

Sorry you find yourself in this situation. We hope you find our discussion boards helpful and hope we can all help you make the best decision. If you finally go for a second opinion, here's more information on how to do that, from the main Breastcancer.org site.

Please keep us updated on how you're doing!

Best,

The Mods

farmerlucy · May 2016

Hi optimistic - Welcome to BCO!. Recon or no is a hard decision. No option is perfect. I was thinking no recon but was convinced to do it. My PS and others had strong opinions about it as did my family. Me, I just wanted the easiest option. In the end I did it, more to please others, I think. My PS did a great job, and they look great. I have 3D nipples from Vinnie Myer. That was fun!!Still, when it come times to replace the implants, I'll think seriously about taking them out. I just want to experience the freedom of no breasts. However, with that said, I go bra less much of the time and that is awesome. I'd say look n your heart and go with your gut. Also be sure to check out breastfree.org.

ksusan · May 2016

I was 52 when I went flat. My BMI was higher than yours and my surgeon said I would not have dog ears, which was correct. I am very happy with my decision, even as I sometimes grieve the loss of my breasts.

I suggest that you

Seek a second opinion with a surgeon. If I don't have dog ears, they need to explain why you would, or use a different technique.
Document what you want in writing, give it to your surgeon and oncologist, and request that it be placed in your chart. Be explicit that you don't want tissue left "in case you change your mind."
If you can't get their agreement on this, get a new team. Your body, your choice.

By the way, my clothes fit well.

Here's me flat with a BMI of 30.1. I have protruding ribs, but no dog ears or "love handles":

Here's me in those awful ill-fitting clothes:

By the way, has your team never heard of prosthetics? If I wanted to wear a blouse that draped better with breasts, I would add foobs to that outfit.

Best of luck!

mustlovepoodles · May 2016

ksusan, you look great. I am working on getting that confident look that you have in your clothes. It's coming together slowly but surely.

I initially wanted to go flat but my breast surgeon really insisted that I see a plastic surgeon before I made a decision. They were both convinced that I needed reconstruction. So, I agreed to something called Goldilocks reconstruction. It's a non-traditional One Step reconstruction that uses your own tissue to make little breast mounds.

Unfortunately my recovery has been excessively long and my wounds are still not healed after three months. I won't go into all the details but it was truly terrible. I am very grateful that I did not have regular reconstruction because I would have lost it all.

At this point comma I am actually getting more and more comfortable with being flat. For one thing, I find that most people don't even notice. I'm 59 years old so it's not like guys are checking out the boobage. I have really enjoyed going bra-free.

I guess this is my way of saying take your time I very nearly got myself talked into more involved reconstruction and I'm so sooooo glad that I didn't. At this point I don't know whether I will ever have reconstruction. After all the trouble I've had healing I am not inclined to sign up for more surgery. I have decided not to make any decisions about it until after January 1st

OptimisticbyNature · May 2016

@dtad Thanks for your encouragement. I'm going to try and get some more clarification from my BS this week. And I'm going to get a second opinion on Wednesday.

@AmyQ Thanks for sharing your story and the encouragement. I am still on the fence but I need to make a decision next week.

@debiann Thanks for your story. The surgeon I'm seeing on Wednesday is a DIEP specialist. It's especially encouraging to hear that you have gotten some sensation back. Have you had any problems with the abdominal incision? Or are there any limitations on exercise? I have had previous abdominal surgery so I am not sure I am a candidate.

@farmerlucy Thanks for sharing that. It's interesting how other people have opinions about our bodies, isn't it? I am finding I am surprised that they do. I will definitely check out breastfree.org.

@ksusan You look great - with and without clothes! And in those clothes you can't tell, can you? That's an eye opener. I'm fascinated that they told you you wouldn't have dog ears. Of course my surgeon didn't use that term but I think she meant the same thing. She said that without the weight of the breast to pull it forward the fat on the side would form rolls on the side under the arm. That's the same thing, right? I asked what if it was lipo'd out and she said there'd be loose skin...IDK...she's not the PS. I asked the PS and he didn't really seem to address it - too busy trying to convince me to have a partial mastectomy instead. It just seems like everyone has their own agenda and wants to achieve their own goal without looking at it holistically. But, I guess that's what they are paid to do.

@mustlovepoodles Thanks - I had never heard of Goldilocks before. I checked it out after you mentioned it. I'm not sure I'd be a candidate but I can ask about it. Then again, you said it wasn't terribly successful for you. Just no easy answers, eh?

Optimist52 · May 2016

Hi Optimistic, I had mastectomy last July and my BS is also pressuring me somewhat to do DIEP reconstruction. Initially I was planning to do this with bilateral mastectomy as a first surgery, but it didn't happen that way. So now I've been living with one side flat for 10 months and for me it honestly has been ok. I use a silicone prosthesis and in clothing it's very comfortable and looks fine. I certainly get hot flushes (care of letrozole, thanks) but don't find the prosthesis makes me feel hotter at all. Now I have to decide what to do with the other breast, gradually leaning towards prophylactic mastectomy in the near future and no recon.

BlueHeron · May 2016

I'm half flat (UMX) and I have absolutely no desire to go through more surgeries, more recovery, more exposure to risks and complications. I'm 47, and my mx was in January, and I am SO happy I did not reconstruct. Sometimes I camouflage with clothes, sometimes I wear my prosthesis, its all just fine. I'm back to tennis and kayaking and work and life. There is a Facebook pagecalled Flat and Fabulous for those considering or living without recon. It's worth a look! It's a closed group, need to request membership. Lots of women post pictures there.

debiann · May 2016

Optimistic,

The absolute WORST part of the surgery is the DRAINS!!!!!! The breast and abdominal incisions were no problem at all for me. They did need to take a small piece of muscle from my tummy, postage size stamp size, and repair the area with mesh. This doesn't always happen, but it can. My stomach area felt weird and swollen for awhile, but its good now, just numb around the navel area. My left boob still swells from time to time, but the PS keeps reminding me its only been a few months since my last revision and healing takes time. Losing the belly pouch REALLY made me fell so much better. I lost a pant size and I'm no longer wearing baggy tops that hide my belly. I even joined a yoga class.

Previously I had an abdominal hysterectomy and I could still do DIEP.

I'm happy that I went through with the surgery, but I only cautiously recommend it because choosing to do this type of reconstruction takes a lot of commitment. You may need more than one surgery. There is more recovery time involved. Its a much longer surgery. Its the right option for some, but not right for others. You need to base your decision on what is right for you and your circumstances.

On the other hand, there is nothing wrong with going flat if that idea appeals to you. Being flat can be beautiful, I was originally all prepared to go flat, but then I had months to think about it because I did mx after chemo. So I sat on my couch, miserable, bald and feeling sorry for myself for 4 months of chemo looking into all my options. Till I finished my chemo, I felt like so much had been taken away from me, my hair, my taste buds, my strength. I had hot flashes, neuropathy in my feet, chemo brain, and had to keep my port to finish a year of Herceptin. I felt like I'd been through the wringer. At that point, losing my breast felt like just one more thing cancer was taking away. I needed to get back to feeling and looking like me. An extensive surgery with a long recovery actually appealed to me, I looked forward to an excuse to miss work to recover some more. If I had not gone through chemo, I may have just had the mx, went flat and moved on as quickly as possible with my life.

good luck to you. the decisions are the hardest part.

OptimisticbyNature · May 2016

@optimist52 Thanks for your comments. It is very reassuring to hear your experience. I had heard some comments that the prosthesis was hot and uncomfortable so it is good to hear otherwise. Good luck with your decision about the next step.

@BlueHeron Thanks for the referral to flat and fabulous! I sent a request to join the group. I am also encouraged to hear that you are kayaking. I love to kayak and have been concerned about losing that.

@debiann I'm glad your reconstruction experience has been so positive, especially after all you had to go through beforehand. Yay for yoga class! I am meeting with a DIEP surgeon tomorrow so I will ask lots of questions, and also about the possibility of doing it with a delay if I want to try going flat for a while. I realize it would be more involved because of the need for extra skin but it might also be better psychologically to space them. It's encouraging to know you were qualified even after having had previous abdominal surgery.

debiann · May 2016

Good luck at your appointment. I asked about doing a delayed DIEP but my PS preferred not to do it that way. He said I would get a better cosmetic result if it was done right away. If you look at DIEP pictures you will see the ones with football shaped scars in the middle are the delayed recon. My scar is round and will be completely covered by the nipple tattoo. The scars do fade a lot over time. It will be interesting to see what you PS says.

You may want to also ask about what can be done if you decide to stay flat, what can he do to give you the best look. My PS suggested some fat grating if I chose flat

Meow13 · May 2016

I had the delayed DIEP, I wish I could have had it done at same time. My skin color is a perfect match though. The line is very faint I guess I am lucky. If I ever find myself faced with mastectomy on the right I will do it all the same time.

OptimisticbyNature · May 2016

Hi Meow,

I'm glad the DIEP worked well for you. It's reassuring to hear stories that turn out well. I hope you don't ever have to have another mastectomy but I'm glad you have a plan for how you will handle reconstruction if you do. BTW - your cats are beautiful!

Take care,

Liz

okbecca · May 2016

If it was me, I'd get another surgeon. The doctor is out of line to be be pushing you, in either direction. I was 225 pounds at 5'6" when I had my bmx. Yes, I have fat pads under my arms where the surgeon didn't take the breasts, but she worked to make it slope away from the flat spot, so no dog ears, and, as I lose weight, the fat pads are slowly melting away. You are MUCH slimmer than me. Your surgeon should have the skill to do at least as well as mine. :-)

There is a lot of money -- for the docs -- involved in your decision; that, plus their almighty egos. The notion that you should undergo extensive surgeries so that you will fit your clothes -- instead of just buying or making new clothes that fit you instead of carving your body to fit them -- is incredibly specious. What garbage bin did they find their values in?

You need a surgeon who will inform you, but not push you. I never saw a ps. Refused. I got a lot of courage from a friend of mine who told her surgeon, "there's no reason for me to see a ps, because I ain't doin' none of that."

It's safe to say that you know more about you that these hired professionals who've only seen you for a few minutes in their offices. You make your own decision, and consider finding a doctor who's more invested in getting a good result than pushing you into surgeries you don't want.

aunt_paula · May 2016

I was 44 when I had BMX, and my BS pushed me to do reconstruction too. I was going to have to have latissimus dorsi flap reconstruction, and the more I read/talked to people who had had it, the more sure I was that I didn't want it (I knew from the beginning I didn't want to do reconstruction, but felt so pushed that I considered it for a while). The BS was concerned that because I was so young I would have difficulty emotionally, it sounds like for the same reasons your BS has given. I met with the plastic surgeon twice and knew it was not for me. I have not regretted it at all. I can wear a bra if I need or want the appearance of breasts, but I am very happy with my decision and am glad I didn't reconstruct. I am also overweight, and have a dog ear on the SNB side, but it doesn't bother me enough to do anything about it. I am in the process of losing weight and may have scar revision done at some point, but am happy either way. I hope your surgery goes well!

AmyQ · May 2016

Optimistic, I've been thinking about you and wondering how you're doing? Any progress with a second opinion? I really feel angry that the BS is pushing you towards their way of thinking. THAT is NOT their job -

Just know that the information offered by the lovely ladies here comes from personal experience. Your BS cannot relate unless she walks in your shoes. So unfair to you...

Hope you're well and able to come to an informed decision. Looking forward to hearing from you again.

Amy

OptimisticbyNature · May 2016

@okbecca - thanks for sharing your experiences, especially the fact that the tissue on the side began to disappear as you lost weight. That's reassuring. And that's what I couldn't understand - I'm not going to lose my ability to lose weight, so why wouldn't it just go away like any other fat I lost? (I do have to admit my surgeon has been extremely supportive. She has spent a total of seven hours talking to me in the past few weeks - 3.5 in two office visits and the rest on several phone calls, answering my many questions and providing encouragement. In fact, she has spent so much time with me, that it prompted my dad to ask "doesn't she have any other patients?" But even so, you're right, she doesn't know me and can't assume what my values and priorities are.

@aunt Paula - In the two weeks since I've been diagnosed I have heard "but you're so young!" more times than I have in the past ten years (I'm 55). I've talked to 4 surgeons (2 breast surgeons, 2 reconstruction surgeons) and they all say the same thing - but you're so young! you're going to want your breasts! Luckily, the more I talk to them, the more confident I become in myself. Their questioning is helping me to explore my own thinking.

@AmyQ - thanks for thinking of me. I had another biopsy this week that I expected to be ADH but turned out to be more DCIS. It was discouraging and has knocked me for a bit of a loop. Now there are two spots over an inch apart. How much more is there that they can't see? My doctor is still saying that a partial mastectomy and radiation is an option but she has softened on her discouragement of a mastectomy without recon. So progress, but not for a great reason. I am still debating. I am scared of radiation (partial mastectomy) and of lymphedema (full mastectomy) risk. There are just no easy answers, are there?

glennie19 · May 2016

Go with what you want. If your surgeons are not in agreement with you, consider another opinion and tell your current surgeon why you are going elsewhere. They should give you what you want. No one should be forced to have recon if they don't want it. Sometimes "dog-ears" are left cuz it is sometimes hard to tell how much skin to take off. It can be trimmed off later in a relatively minor surgery. I got the "You're so young also", and I was 54 at diagnosis. I never discussed recon with my surgeon, as I knew I didn't want it, and thus didn't think it was necessary to mention it. He never brought it up. He left excess skin cuz he assumed I would have it. Was completely shocked 6 weeks postop when I said I didn't want it and when could he take it off? He'd never removed excess skin before. If I'm going to do that, I'll need to find someone else. If I ever go thru this again, I will be very definite with my new surgeon about what I want. There are a lot of women on here who have had excess skin left cuz the surgeon overrode what they wanted. You may want to consider getting it in writing, so everyone is very clear. I had not regretted for one second not having recon. Just because we are "young", doesn't mean we want to go thru with it. The important thing is that IT IS YOUR CHOICE.

I am scared of radiation (partial mastectomy) and of lymphedema (full mastectomy) risk.

BTW: radiation is a risk factor for lymphedema. They may not mention that. Removal of lymph nodes, even one, and radiation treatment are risk factors. Not everyone gets LE and there are things you can do after surgery to reduce your risk.

OptimisticbyNature · May 2016

Hi Glennie

Thanks for the information about LE and radiation. (sigh) I think I need to stop borrowing trouble worrying about all the things that could go wrong and just focus on the current situation. I'll make myself crazy otherwise. To your other points, I will definitely be sure we are clear on expectations and outcomes before any surgery. I don't want any assumptions. Thanks!

glennie19 · May 2016

ObN; you gave yourself good advice. Focus on what needs to be done, and/or decided on, now. Make your list of pros and cons with your surgical options and go with what seems best for you. Wishing you all the best. Keep us posted.

Smurfette26 · May 2016

I was 51 and overweight when diagnosed and I'm very happy with my surgical outcome. My mastectomy was October 9th last year, so a little over 7 months. I knew from the get go that I didn't want reconstruction. I just didn't want additional surgeries. My surgeon did explain my reconstruction options throughly. He also said you have to realise it is not a breast. Will never be a breast. Will not have feeling and sensation. I haven't regretted my decision at all. I hope you reach a decision that is right for you. Will include a pic of my mastectomy scar. Thinking of you. Hugs Donna.

coraleliz · May 2016

For me, I knew that reconstruction would not make me happy(happier?). I was diagnosed at age 52. I was supposed to go have a talk with a PS before my final decision(BS's order/recommendation). I knew I would never consider the additional alterations of my chest in a positive light. I think they've all been covered in previous posts. I skipped that appt & was prepared to discuss my refusal with my surgeon. I'm not sure she realized that I skipped that step. My attempts to change my appearance(haircuts,makeup,clothes) have failed to make me feel better in the past. So for me, appearance just isn't that important. People just don't notice! I get a "shocked" look from women in yoga or at the gym when I share my BC experience with them. I'm flat as can be & wear tight fitting workout clothes without prostheses. Optimistic-thinking of you & hope everything goes well for you, whatever path you take.

Artista928 · May 2016

I knew at 51 that I wanted recon. Being so overweight esp for me I would feel greater loss and have poorer self image going from a D cup to flat with scars, even if it's just me seeing it. So for me it's worth sitting in TEs until Dec when enough time after rads has elapsed and I get perm implants. Do what's best for you and don't let anyone sway you flat or recon. It's up to you.

I_Spy · May 2016

Here is my two cents: We are similar in that I had a BMX for DCIS; they then found LCIS in the left breast that had never shown up on any imaging (Mammograms, ultrasounds, MRI's), so I consider I dodged a bullet: ILC is a silent killer, and it could have been much bigger by the time we eventually found it. So I am SO happy I got the BMX. That is number one.

Number two: I spent my whole life with barely a B cup and I loved it. As I got older and gained weight (I am 52; BMX was when I was 51) my chest and cup size had increased (doesn't it always? sigh). I was a bit droopy and about a 42 C or D (I am 5'11" and weigh about 240). So, I decided to do TE's and then implants, but I wanted to be small and firm. I am very happy with my decision: my foobs are about a 38 C but I'm not sure because I never wear a bra; ever. This might be another option to consider: do the reconstruction, but don't go big. I think it makes me look way younger, I still have cleavage, and I'm getting a killer chest tattoo next November of cherry blossoms over my scars. My bs offered to spare my nipples; however, I did my research and learned that there can be breast cells in the nipples they can't remove, and those can turn into cancer. I was like I am not going through all of this to have two nipple cells rub together and make cancer. I actually miss my nipples, I'm not going to lie to you. I miss them a lot. But I don't dwell on it and I'm happy to be alive.

Coming out of surgery with the TE's filled barely, I could see what life would be like without reconstruction; I can tell you that I didn't mind the way my clothes fit. However, and this is just me -- and you have many other opinions on here -- I felt "maimed"; it made me unhappy. As my foobs have grown, and been replaced by implants, I am happy.

I actually have flaps under my arms because when they remove breast tissue it makes the fat under our arms -- that has always been there -- stand out more. That is all that is happening. So I keep my arms down haha. My ps told me the average number of revisions or surgeries for reconstruction is five; I had just the one and I'm happy. So I think I am a happy median between no reconstruction and perfectly reconstructed foobs with nipples intact that could be in a centerfold: I was like give me some squishies, I'll put a pretty painting on them, and we'll call it a day.

I'd also like to share this with you: I did SO MUCH RESEARCH on reconstruction, how not to get an infection, etc etc etc., and I really liked my ps's protocol: she said there are a number of different ways you can do reconstruction, but TE's and then implants create the *best* outcome for the *most* people. So statistically speaking, you have the best chance of the best outcome with that method. Can you do it other ways? Of course. Can you get great outcomes other ways? Of course. But statistically speaking, that is going to get you the best outcome. Other than moving up my exchange surgery when I got some redness in my foob that my ps didn't like the look of, I have had no problems and everything from beginning to end went as expected (BMX is no picnic; getting TE's filled is no picnic; none of us woke up one day and said "Gosh I'd like to have major surgery and be sent home with four drains coming out of my chest like I'm in a Sci Fi movie").

Finally, after all of my research, the following became my mantra, and you may use it if you like: "It could also, when all is said and done, all work out okay." And mine did.

WifeMomTeacher · May 2016

I'm 29 and chose not to do reconstruction. My surgeon was a bit taken back, but certainly honored my decision in every way. I simply cannot commit to who knows how many future surgeries for a breast that still isn't mine. I know if I should choose to change my mind at some point I can, but I feel confident I made the right decision FOR ME.

azrescue · June 2016

I'm scheduled for a double mastectomy in July. I've opted for no reconstruction. I knew from the beginning that I wouldn't do reconstruction. My reasons are the same as many have mentioned. I'm 47 & both my MO & BS tell me all the time I'm young & have many years ahead of me. My BS asked in the beginning if we'd like to meet with a PS. I told her no & my reasons. She has always respected my decision & is supportive. I have shown her pics of how I'd like to look, she said she can do better then what I've shown her. I would suggest getting a 2nd/3rd opinions. The drs shouldn't be pressuring you into their decision. It's your life. Your body. You need to feel comfortable in your decision. Good luck.

BS is pushing me toward recon after BMX though I don't want it

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