Younger women who chose no reconstruction
Hi ladies, I'm 33 years old and was diagnosed with triple negative breast cancer back in January of this year. I'm also BRCA2+. I've combed these boards along with many others, trying to decide if I want reconstruction or not. I'll be having a BMX and prophylactic tube and ovary removal in the fall. I'm seriously considering not doing reconstruction. I just can't imagine opting for more surgery and running the risks. I feel like, just get me through this treatment with the least amount of surgery as possible and let me get on with my life. Plus, I'm not all that impressed with any pics I see of implant reconstruction, which is my only option.
I've seen a lot of older women mention that if they were younger, say in their 30's or 40's, they would have considered getting recon and not gone flat. So I thought I'd ask the younger women specifically, do you regret your decision? Was your family supportive? My husband is very supportive no matter what I decide, but I've already had family ask, "Will you wake up with implants? Meaning, "You won't have to ever be flat will you?" So this makes me nervous, even though ultimately I know I shouldn't care what they think. Mostly, I'm just wondering if you regret your decision. Thanks so much for any thoughts you could pass along. Wishing you all the very best.
Comments
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So, I am not in a position where I can say if I did or did not regret my decision as my surgery is scheduled for May. But I am also young (27) and choosing to not have reconstruction. My surgeon was curious as to that decision as I was the first in my age group to not want it so do know that it is not a common decision (from what I have gathered) and usually comes with lots of questions.... so know why you don't want to! But I just wanted to put out there that you would not be the only one. My husband is very supportive as well but my family... well, it is just assumed you will have reconstruction. It is assumed that you would want to have that and I don't so, I would not say family is supportive. I feel like my mom is backing off because I am firm and confident in my decision. An excellent article I read put it very eloquently how they cannot give me back what I have now - they will not be the same and there will still be grieving involved. For me, I do not want to deal with the pain and extra recovery involved; my mom had a very difficult time with them and I never want to bother with this again. To me, the complication list / follow-up needed / extra surgery is not worth it. Now this is all my opinion.
This is also the opinion of someone BRCA-1+ with strong family history and doing this as a preventative measure. If I had cancer, I would feel even more strongly about not having them. The article I am talking about is here:http://nofnpinkribbons.blogspot.com/2010/12/missing-my-missing-breasts-and-why-i.html
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I was in my 40s (barely) at dx, but happily married for many years, so maybe not the same situation as someone who is young and single. But I'm sure my decision would have been no different regardless. My main thought was, why on earth would I choose to have an implant stuck into my body, when I could just stick it into my bra and take it off at the end of the day or whenever it's uncomfortable?
Maybe someone who is single, still looking for Mr. Right, would worry.... When to tell? At some point he's gonna find out it's fake. But recon only puts that moment off a teeny bit longer. They don't look or feel real, and you have no sensation in them.
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Hi Allydp,
I'm a little older, but still young here - 41 at dx - and with a significant family history, but BRCA negative. I had a bilateral mx in November without reconstruction. My husband is fully supportive (and actually I think was more horrified than me at the prospect of implants or the surgery to do a flap -- I'm too thin for a DIEP and wasn't thrilled at the prospect of that surgery and the damage elsewhere)
I'm happy so far being flat. I wasn't huge to begin with (small
and I'm thin, so it's not a huge change. I'm completely flat at the moment due to rads and damaged skin, but I was able to wear a bra and prosthesis in the interim between surgery and rads, and while it wasn't comfortable, it wasn't much more uncomfortable than a real bra is, and I don't have my fancy protheses yet. I've gotten some "you can always reconstruct later" comments from friends and family, who were a little surprised when I didn't - - and it's true - I can change my mind in the future. Although cosmetically best to do it when doing the BMX - esp if they can spare your nipple on your unaffected side, the road isn't closed if you later decide you want recon.
Best of luck --
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I'm 44, and had a BMX nine weeks ago. I was sure before surgery that I wouldn't want to reconstruct for a while, if at all, but my surgeon asked me to see a plastic surgeon so I would know what my options were. He didn't want me to go through with surgery and regret not having at least checked it out. I saw the PS and reluctantly decided to reconstruct. Since surgery I have decided not to have the surgery after all (latissimus dorsi flap with tissue expanders). I am happy with my flatness, and don't want to undergo a surgery of the magnitude of the LD flap for a result I'm not at all sure I'd be happy with. I have bras and breast forms I can wear if I need them, but prefer not to; I only wear them if needed to fill out a certain shirt. I just couldn't reach a point of feeling at peace about taking on the next surgery, but feel very peaceful and relieved with the decision not to. I am excited about having the summer to enjoy and spend time with my (seven-year-old) son and do fun things instead of recover from surgery.
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I think you'll find your "target audience" for this question at the Young Survival Coalition - it's a fabulous group of YOUNG women with bc.
Also, a valuable, valuable source of the most up to date information on 3Negative is
http://www.tnbcfoundation.org/
All best wishes, and TRUST YOUR GUT to do what's best for you.
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Thank you so, so, so much, everyone! Your responses have reassured me that my thoughts are valid and I should trust my instincts. My husband and I had a very long conversation last night. He is supportive of me no matter what and agreed that he thinks I would hate reconstruction. We talked through a lot of things and I'm feeling so much better and almost ready to make a final decision. As far as not so supportive family and friends, well, I'm just going to have to stand tall, smile, and reiterate that this is the best decision…for me. Thanks again, ladies.
Sunflowers - thanks so much for the links! I'm already on TNBC Foundation, but will definitely check out the other one.
Wishing you all peace and strength.
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Ally I am in the same boat...I'm still in the throes of chemo, but have been told that I need radiation next OR a mastectomy. Since my diagnosis at the beginning of January I have maintained the same idea - that I wanted a BMX with no recon, but you're right, people tend to be taken aback by that choice when you are younger (I'm 35, BRCA neg). I've also heard the "well, you can always reconstruct later", but I honestly don't think I will ever want to. Despite my own feelings not having wavered, I feel like I'm maybe missing something that everyone else sees?? I'm hoping that once the final decision is set in stone and the surgery date is set I will feel less anxious about this, and it really helps to see someone else in a similar position feeling the same way I am
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Belleb, I will say that I did struggle with it once surgery was scheduled--I grieved the anticipated loss of my breasts and thought, well, maybe they knew something I didn't, and I thought for a time that I wanted to reconstruct. Once I had the BMX, though, it was completely different for me. I was surprised at how OK I was with how I looked and felt about it, and was so glad to get back to my life that I realized I didn't want anything to interfere with my enjoyment of it, even temporarily. If I decide later, I can always see if it's still an option, and if not, I'm ok with taking that chance. For me, it came down to deciding whether I wanted something breast-like attached to me (that sounds so strange to type!), but realizing that even if I did reconstruct, they wouldn't be the ones I lost. That was a turning point for me.
Do what feels right for you (or don't do what doesn't), and don't feel like you have to make all the decisions now. You know yourself best, and it's fine to take your time and see where you are with it after surgery.
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hey there - i'm flat and darn happy with it. as a very active mom, professor, and so on, being flat is great. i am an athlete, and i was an rather well endowed athlete before bc. anyway... i am very happy with flatness.
one direction i'll also point you - if you are on Facebook, consider checking out "flat and fabulous" - amazing group... diverse group of people struggling with these very decisions...
things i love about being flat? i can jump up and jump around with my kid, without regard for my boobs. i can roll over in bed, without squashing my boobs... i can roll over a pothole on my bike... and there's no boob-quake... and more. what's surprised me is how little it seems people even notice. there are a handful of shirts i no longer wear... but there are a handful of my shirts that i think actually look BETTER without boobs!
i won't lie - i do miss my nipples, but recon doesn't change that.... i had fabulous nipples...
my family has been very supportive.
anyway - good luck! i hope you are able to come to a decision around which you feel a deep sense of peace. flat was the decision that gave me that sense of peace... so flat i am!
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Thank you so much, ladies, for all of your perspective. It is extremely helpful. I am truly agonizing over this. One day I wake up so sure I don't want reconstruction, then the next day, I'm wavering, and think maybe I do want it. I truly see both sides. UGH. I'll figure it out eventually.
BikerLee - I just recently found that group and posted recently! It's awesome! Having such a supportive community makes the possible decision not to reconstruct much easier. Our journey's sound like they're very similar...triple negative, same stage, same chemo regimen…I hope I follow you with the pCR! Thanks so much for your comment. I'm so happy to hear you're happy with going flat!
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Have you checked out the scarproject.org website
http://www.thescarproject.org/gallery/
It shows some women who chose not to reconstruct & some who chose to. Good luck in your decision making process. I never really considered recon but understand your struggle.
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Ally et al,
I'm 42 and have decided not to reconstruct. I might someday feel differently -- and I can look into reconstruction if and when I do. But I really can't imagine changing my mind. I am small-breasted, and because I am thin the plastic surgeon said I would need a tissue expander and implants AND a lat flap to make a big enough boob. NO WAY! I am a runner and value mobility and function over a little mound on my chest. I'm very happy with the falsie from Nordstrom, which saved my insurance a bundle of money and saved me months and possibly years of procedures, risk, discomfort and possible diminution of arm/shoulder function. That said, I don't judge anyone for deciding differently! It's very personal and if I were large-breasted I might feel differently.
I wrote a blog post about this very issue called, "Breasts, real and otherwise." It was inspired by a thread on BCO. I feel there is tacit pressure to reconstruct (especially if you're young), so I am grateful for the support I found here for going flat and happy! Best wishes with your decision. Remember, you can change your mind later -- don't rush into anything.
http://alaskamamaruns.blogspot.com/2013/09/breasts...
(I'll add that I'm widowed... that doesn't change anything for me as I wouldn't be interested in a guy who couldn't Deal With It!)
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Allydp, I can really relate to you. I'm 37, married, mother to a boy nearly 3 and after testing brca2 positive 3 years ago I'm really considering having the prophalytic bilateral mastectomy. Breast cancer hasn't skipped a generation in the last 3 we know of. I don't want to wait to get it though I do all the mammogram MRI and ultrasound testing now. I'd rather beat it before it happens. But it's true that many people seem to push young women toward reconstruction. I know that's the best choice for some so I won't be critical of that choice. But I know it's not right for me for so many reasons. I've been looking into the going flat option and it's tricky finding information. My BS is very understanding and supportive of this choice. I did see a PS who was great. But I'm not comfortable with fake boobs under my skin. If I chose to wear prosthetics they'll be on top of my skin. But I'm thin and only a B now so I might be able to get away with being flat too. I'm a stomach sleeper and I hear it's hard to sleep on "rocks". I want to have only the one surgery and recover quickly because I want to be able to pick up and squeeze my son as soon as possible after. Due to my managing a small department at an office I don't want to take off extra sick time. And It would upset me if any reconstruction had a set back or too much pain. I honestly don't deal well with either of those. I'm trying to decide if I move ahead with this choice this July 2014 while my mom is still young enough at 71 to help me with my home and son and while my husband is off of teaching school or do I wait another year. I do the same thing deciding to do it one day and the next not as sure. I'm very blessed to have the knowledge I have the gene mutation so I can make certain decisions. And I'm blessed that for now it's my decision and not one cancer is making for me. But I wonder what my husband will think of me flat. I know he'll still love me but it could affect his attraction. I know I shouldn't care what other people think but I worry that especially if I dress flat the people who will notice and broach the topic might we weirded out that I did it even though I did not yet have cancer. They might think it extreme. But I don't. Why wait to be shot? Wouldn't you avoid the bullet if you knew it would hit would eventually? I really like these boards and the supportive women. Someone wrote "I'm sorry your uncomfortable with my lack of breasts. I'm uncomfortable with getting cancer." I think I'll use that line if and when I need to!
It is really nice to know there are other young women choosing no reconstruction. It makes moving ahead with this choice easier. I just need to be brave enough to schedule the surgery and DO it. I made a list of all he reasons why I have to. But if I had cancer, this would be a no brainer. Double mastectomy. No reconstruction. Sorry for the opus. I wish you all the best with your choices.
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I was diagnosed at age 38, had a 19 month old and a 5 year old and did not have reconstruction. Initially I wasn't a good candidate because I was going to have radiation, etc Then I just couldn't see the point of putting my family and myself through more surgery. Ironically, I had recently been thinking about going for a consult and instead, recurrence...grrrrr
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Bikerlee, I love all your posts and so admire your courage and attitude. Like you, i am an avid athlete that runs, plays golf,, swims, do martial arts and yoga. and you sound like you are really young like late 30s or early 40s? We have almost the same diagnosis and treatment plans - neoadjuvant chemo with AC, taxol and carbowith surgery about 4 weeks later. Congralulations on your PCR and 3 year anniversary coming up. I am not sure if it is counted at the DX date or surgery date? but either way it is coming up SOON for you. A great milestone to chalk up. my surgery date is set on july 15th. I have been very conflicted about having prophylactic left breast removal as well as reconstruction. Well, i have always been 90% sure about having no reconstuction because i do not like the multiple surgeries. complications or possible infections and with chemo making my body a little compromised, i want the simplest and quickest healing surgery there is!
Can you share some of your thoughts on this where you based your decision on? The biggest hesitation I have is on the prophylactic breast removal, I go through it many times in my mind during a course of day, the pros and cons of each side... Of course getting it removed means more recovery time, more trauma to the body and in Chines energetic medicine, it also blocks the energy (chi) flow of the body and then there is the worry about aesthetics and considerations for finding a partner - I am single 45 year old; but then on the other hand, the worries and concerns that will linger and stay with that breast down the road especially with our type of TNBC diagnosis. Not to mention the 6 month interval of mammograms, the trepidation and radiation that go along with that. And the many stories of it going to the other breast from our other BC sisters. Can i ask if you had the BRACA gene test and what the results are? Mine are negative. I would truly appreciate if you could share some of your thought processes regarding this decision that you are so happy with. I want to be happy with whatever decision i make and never live in regrets anymore. Just like Louise Hay says, my new life will start on this year of 2014 and after i get the PCR and life will go on with passion -
Hello, I am 34 years old married with 6 children all under 13years old. I am scheduled for BMX on the 15th and actually called the doctors back and told them I did not want to do recontruction. They all think I am crazy but to me it is just not for me. I am going with my gut first off, my gut instinct is the one that told me to check my breast the day I found the lump. Along with many other things it just is not a good "fit" for me. I also understand this may not be the right decision for someone else in a similar situation. This being said you do what you think is right for YOU. Take care!
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As busy as you must be with six children, I can see why you don't want to devote any more time than necessary to this disease. It has already taken too much. You can change your mind later if you want to. You probably won't want to.
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Hi Ally-
I had just turned 40 when diagnosed and I opted for a single mast. without recon. So I am flat on one side. Everyone said the same things to me..."I'm sure you will want to reconstruct".... "How does your husband feel about it?" and my favorite "I don't know how you can live without a breast". NOT kidding on that one.
I have never regretted not reconstructing. I researched it and was not impressed by my options. If you want to see pics or get more info on specific stories check out breastfree.org. It's a site that one of the bc.org members created about not reconstructing.
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Allydp, we are diagnosed around the same time this year. similar DX and chemo regimen. How are you doing? I have 4 more taxol and carbo to go. Had to go for Neupogen shots a couple of rounds so far while on taxol and carbo due to low white blood count. My surgery is scheduled to be July 15th. Like you I am wavering on recon. some days i feel 100% sure i do not want to do it and then the next day I feel about 60% sure i want to go through with it. I just do not know what kind of psychologically negative effects it may have on my self image and self esteem especially relating to future dating etc. but meanwhile I feel strongly not to put my body through more surgery, pain, possible complications of infection or rupture, or how safe the nipple sparing is with respect to grafting cancer cells back to the breast and also how I would be able to detect any lumps if there is all this silicone stuff in there. I do not have big breasts and never liked wearing bras and never been fond of wearing sexy type of clothing to show cleavage type of person and i do not really care what others think. but i do want my partner to feel attracted to me. I have made a couple of PS consults to go next week and will find out more info to make a final decision. Keep me posted on what you are thinking and how you are feeling. Hang in there. One question; if they did not find any positive lymph node, why are they doing radiation after your surgery? Hugs, and take good care
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I just had surgery on 5/15 I am 34 years old I also chose not to do reconstruction. This has been the best descison for me I did not want to take the chance of any extra surgeries and also was not to impressed with outcome. I have not regretted it unlike what others thought. This is your choice no one can make it for you and there will be people who say "you go girl" and others who think you are "crazy" go with your gut .
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Cammychris, how are you doing? Hope you are having a smooth and rather painless recovery. Hugs to you!!
How long was your surgery? are you able to move around the house now or take a shower and take care of yourself? You are an independent courageous woman. I do not want to burden my body with extra surgeries or future complications. do you think you will plan for new wardrobe? most of clothes i have now are quite tight fitting.. I am thinking that if i choose no recon, i will start wearing big loose clothes since I do not fancy wearing those falsies. How many inches are your scars? I sure hope that you are recovering well and send a note to let us know when you can!
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Lettinggo, sorry to butt in but I want to stop you from possibly making a mistake. After my BMX I gave away many tighter tops and bought some big baggy tops. I now regret doing that. I ended up giving away the big baggy tops and buying new t-shirts and such very similar to the ones I gave away in the first place. I found that by wearing scarves or vests or jackets I could wear the clothing that suited my style and still feel confident. You may end up liking big and baggy but if you don't you'll regret getting rid of the clothes you have now. So this is just a caution to hang on to those clothes just in case.
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I'm going to second what river rat said. I purchased shirts with buttons. I think they're called blouses during my BMX recovery. I also bought looser shirts. Prior to giving my other clothes to the thrift store, I tried them on as a flat person. I ended up giving almost nothing away. I'm not a scarf or accessory kind of person, so I never tried those. 3 yrs out from my BMX, no problem finding clothes(flat girl clothes).
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So I can only attest to my own experience on this - feel free to message me if you have additional questions regarding my experience
I just had my BMX on Wednesday and was able to shower and wash my hair loosely on my own the day afterwards. I was just fine in my bed with lots of pillows and a blanket to snuggle with on the side - so glad I didn't buy a recliner or anything else special! So like I said I was able to shower the day after - just could not have the water run directly onto the incision just the back. I think I could do pretty well on my own here at the house especially if I had my meals portioned out so they were not so heavy. So far, twist tops are more tricky, I don't think a can opener would be either. I haven't avoided meat so I cannot attest to that, but I think protein is very important either way. Anyway - the biggest thing you will see from all of these comments is they are all different... different women, different circumstances, different surgeons, etc.
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hello surgery was not as bad as I thought it would be. I started moving around right after surgery taking little trips to bathroom and walking the halls as much as I could. I took a lot of pain medication the first 3days I had to sleep I. Recliner, I had drains in for 7days when they pulled them out slight burning sensation but not to bad. Incision is horizontal about 4 inches were each ready was I think there are still steri strips till they fall off. I feel so much better now that the surgery is done I do not regret anything. Hope this helps
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Hi ladies, sorry I haven't been back in a while. Thank you so much for all the great feedback! I truly appreciate it!
Lettinggo, wow, we do have very similar dx's and treatment paths! How did your PS consults go? Have you made a decision yet? You should have only 1 more chemo left, right? That is awesome! The Carbo really kicks my butt. I have 7 more weeks to go, with only 2 being Carbo since I get that as dose dense every 3 weeks. I cannot wait to be done.
I feel a little sheepish coming back here since I have decided to go forward with reconstruction. It was an excruciating decision for me and I still sometimes question if I'm making the right choice. At the end of the day, I feel like my apprehension is mostly my fight mode talking - that when the dust settles, I will regret not reconstructing. I met with a PS who has a lot of experience with radiated breasts, which also helped my decision. I am going much smaller. I'm currently a 32D and will hopefully reconstruct to a small B. I am just praying that I don't end up a statistic and run into lots of complications. If I do, I will remove the implants and be done with it. Something else that aided in my decision was I ended up joining a few flat and fabulous online groups. One of the things I kept reading is how they missed their breasts, or were self conscience when people stared. I could see myself feeling this way. I didn't want to be envious of women with breasts for the rest of my life, and I think I would be. So, for better or worse, I'm going through with it. I hope I haven't offended anyone here with my thoughts or reasons. Your feedback has been immensely helpful for me as I hashed all this out. I wish you all the very, very best!
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Alicia, I wish you all the best with your reconstruction efforts! I, too, am struggling with this decision. I had expanders placed when I had bilateral mastectomies done in October. I was fully expanded, then deflated for radiation one side and then they tried to re expand. The non radiated side was perfect but the radiated side was excruciatingly painful. The PS has advised that I have a capsular contracture, which is a common complication with radiation. So I was faced with a choice. I can opt to have the expander replaced with the addition of cadaver skin for support, knowing that there is a 40-50% chance f failure/complication. I can get what he really wants to do, which is a LD Flap. Or I can go in and have the expanders removed altogether and move on. I have struggled with back and shoulder issues since surgery I and radiation so the LD Flap is NOT an option I am willing to consider. I am struggling with buy image at the moment so I have chosen to give the expander swap a try but, should it fail, I will just have them removed and move on. The comments on this page have been very helpful in relieving my anxieties about the very real possibility that I will be living my life with a flat chest, so thank you ladies for your input!!
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Hi Alicia,
I'm glad you're at peace with your decision to go ahead with reconstruction. I hope it works out well for you.
For others reading this thread, though, I just wanted to mention that most women on flat and fabulous threads choose to go totally flat -- that is, they don't wear breast forms. So, that may be why they struggle with feeling self-conscious. I personally would feel self-conscious without forms, which is why I wear them. With them, I feel and look in clothes just as I did before.
As for women missing their breasts, most of us certainly miss our breasts, at least at times. But I think that's true for women who have reconstruction as well, since a reconstructed breast doesn't have sensation and (while some results look quite good) doesn't look the same as the original.
That said, I think there are good reasons for choosing reconstruction. Each of us has to figure out what's best for us. Wishing you the best of luck, Alicia.
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