OK, I did it. Called the PS office and said, no thanks
The past 3+ weeks have been a horrible roller coaster ride for me. Uni or bi? Recon or not. What kind of recon. Decided on bilateral a few weeks back and feel that is the right decision. Whittled it down to implants or no recon and have decided on no recon. I'm pretty sure its the right decision for me but not 100% sure yet. Maybe I'll know by tomorrow.
Thanks to all of you who post here about your experiences. Its been very helpful to me in assessing my choices. My bmx is 12/2. I'll be back posting here at some point - probably in January when I'm feeling better. I'll probably be spending more time in the surgery section in the next couple of weeks.
This is the hardest decision I've ever made. I know everyone says you can choose to recon later but because I've had rads previously the PS said immediate or not if I'm doing implants. Of the flap surgeries, I'd only do a diep and I really don't want a long involved surgery with possibilty of fat necrosis causing alarms and I don't want any other body sections without sensation. Maybe fat grafting will be a possibility someday.
DH said the sweetest thing to me this afternoon after I told him I called the PS office. "You know you aren't like most other people in our image focused culture. That's one reason why I love you. I think you'll be okay with this."
Take care everyone,
Annie
Comments
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Dear Annie62, I am just a few days out from a uni-mx with immediate DIEP recon. The one thing I can say is, no one can make this decision for anyone else. Everyone is different. Probably the only thing we all have in common is that it's a tough decision, deciding what will be right for us. And the other thing that is universally helpful is an understanding and supportive DH (or whatever partner). Sounds like you have that in spades, and I am very happy for you.
I went back and forth on fat grafting and DIEP, finally went with DIEP, not entirely convinced it was the bestest thing ever. You will be "missing out" on hours and hours of anethesia time and exhausting recovery!
I wish you best best wishes in making your decision. I have a good feeling you'll make the right one for you.
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Annie, I am glad you are at peace with your decision.
I had a Uni Mx, and no-recon. While I would quite like to be able to "magic" a new boob on, I don't regret my decision at all. Actually, I hardly even notice that I have only one boob. I sometimes miss having cleavage, but that is not a big thing.And naked I look totally fine - it is just different, not horrible.
One thing I did do which (for me) was one of the best things I did - the bra place I go to sewed a "cookie" into the bra area of a regular swimsuit. It is wonderful - I just pull it on, and I look like I have a boob on that side. I don't have to worry about swim prosthesis, things falling out, etc. I never though I would feel confident in the water again but I do.
Anyhow, all the best for your surgery. It was in December two years ago that I had mine. Let us know how you get on.
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Wow, that's beautiful and true beauty!
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Edited to redact a post with personal information.
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I had a BMX without recon too. I actually thought I'd have done recon by now, but keep putting it off because I just don't want to go through such a big surgery and be down again. Last month I finally made the decision to not do anything at least for another year, give myself time. I have no regrets. My DH has been wonderful! I think he's made me feel more beautiful in the last year than our whole marriage.
Good luck with the surgery and feel free to PM me if you have any questions or want to talk.
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KerryMac,
What's a cookie? Never heard of it, and it sounds interesting. (Not meaning to hijack the thread)
Dawn
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Hi Annie-
I am also in NJ and made the same decision you made, although I did the uni. I have never regretted opting out of recon. I don't know how old you are but I was 40 at the time. My husband sounds like yours. He told me that I have always been sort of non-conventional and why stop at that decision. I just could not see going through more surgery than I had to-the risk/reward was not worth it for me.
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Annie,
I can so relate to that call to your PS. I went through the same experience and felt at peace afterward. Having a wonderful and supportive DH helped, too. So glad yours clearly loves you for who you are.
Please let us know how you're doing after your surgery. Best wishes.
Barbara
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I had BMX on Oct 18th. Chosen no recon. But I did take the picture of breasts, just want to show them to my daugther when she grows up
. My DH has helped with the drains and undress the bundle. He thought the new chest looked good~ -
Thanks everyone for your replies,
Kitchenwitch - I wish you a speedy recovery from your surgery and all your treatments. I've read your other posts.
I think it is right for me. I'm 48 (in a few weeks) and married for 13 years. If I was much younger or single I think I would have gone for recon and possibly a uni. Meglove - funny on the pics of your daughter. I have a 19 yr old stepdaughter who i've known since she was 4 - I think she'd faint if she saw by boobs! :)I think I'll have DH take some pics for me - even with my lopsided leftie from my previous lumpectomey, re-excision, surgical biopsy and rads.
Sherry - thanks for your reply. I don't think I realize that you did no recon. When I'm on the Stage III thread, we don't talk the surgery so much. BTW, I think I still 'qualify' as Stage III this go round LOL, so I'll be around there too.
Kerry - my wonderful DH said to me - so you'll spend a lot of money on tailoring and getting things sewn into your favorite things so you don't need to think about it instead of money on co-pays and other surgery related expenses. He knows I'm the type to not spend the money on myself/clothes! Its funny - the suit is probably one of the first things I'll do.
Carol - I like that non-conventional. I've read some of your other posts and know you run. I've done a few mini-tris (Danskin, Jerseygirl) but I'm still outta shape! Whenever I see your log in I think of you as living in Clark, NJ.
Jenn - thanks for your note. Sometimes it feels like the ladies who choose not to do recon always knew how they felt or maybe had a bad reconstruction experience. Its good to hear about folks who were really on the fence and are at peace with their decisions (at least so far.
) NMI and Badger and Barbara- thanks for your kinds words.
Night all,
Annie
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Annie-nope-not in Clark. I'm in Lawrenceville. See you on the stage III board. Oh, and I am also out of shape.
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Annie, Carol -- Please tell me what caused you to decide one way or the other. How did you know you'd be happy with your decision? I'm struggling with this right now and feeling pressure (maybe self-imposed) to decide NOW! I have a 12/1 surgery date, and with Thanksgiving coming up, not a lot of time to decide without moving the date -- which I really don't want to do.
I'm not a candidate for autologous recon (too thin, they say -- I can hardly believe it, haha!). I need an mx in only one breast, but the thought of going through the long, uncomfortable TE + implant process only to end up with a breast that doesn't really match the "good" one is not very appealing. If I do no recon, I'd be even more lopsided, yet somehow it seems like an "honest" end -- meaning no disrespect to the majority who choose reconstruction. But how do you deal with the prosthesis ALL the time? I'm a runner, and I wonder if it would be really awkward and uncomfortable?
That said, I long most of all for symmetry (and a quick process)....so a BMX without recon does not seem so farfetched. It would be a little weird for me at first; I have somewhat of an hourglass figure (though just your average B cup), so losing the top half would be a significant change. For a lot of reasons, though, being without breasts sounds a little bit freeing.
Carol, I too am sometimes a little unconventional. In fact, I'm more worried about making the wrong choice just because it would be the unconventional one -- instead of doing it for the right reasons.
Thoughts, your experiences??
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Annie; your story is deja vu for me. Just this past September I abruplty changed my mind from no recon to doing recon (after consulting with a very persuasive PS; who knew I would not be able to use him b/c he is out of network). then, after broadcasting my decision to family and friends; I totally changed back to no recon. I was very much at peace with this decision; tho heads were spinning d/t my extreme about-face in just a few days. I have lived with an unrelated congenital deformity and have had a total of 30 surgeries in my life. I had dealt with necrosis in those post-op courses and I NEVER EVER want to put myself thru any of that again.
I had my Bil MX on 10-12 and I am just so relieved that I don't have any extra pain or hassle. I feel inner peace on this. DH supports me totally. Of course, I honor any woman's decision to do what is right for her. But I was glad that I knew myself well enuf that I knew how to best take care of me. that is honoring myself and that is one of the highest achievements in life. I feel this ability will serve me well in all the future life decisions I will face.
I was very pro-active with BS; told him I appreciated that he did his professional job of presenting me with state of the art PS. His RN told me that I am only the second person in his practice to have declined recon. I was firm in my resolution, and we just went ahead to plan the MX. Best wishes to you. PM me with any post-op ?s. I learned so much new info those first few wks postop!
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Eileen - I was the same way but fortunately DH was the only one privvy to my decisions. I have gotten some extremely strong encouragement from family and docs to do recon, but I feel it is because they think that I am young and will regret this in the end - say 1-2 years out. I finally realized that a large part of me thought I might be making a big mistake. That did it.
Carla - I hear ya on the feeling about having to make a quick decision. Everyone says you can do it later if you want and that's true for most. Since I had rads before, implants are out for me unless I do it now and I don't want to do the other more intense surgical procedures. Worst case if I do decide later on recon I could do a DIEP and deal with additional scars. So I really felt I needed to make a quick decision. I was dx 10/4 so this has been dragging. Thinking about PS delayed my surgery 2-3 weeks but that's okay since I feel like I had time to think about things more.
Here are some of the things that helped me decide. First I would pick a day or two and imagine myself having chosen one path. I tried to imagine myself living with a really good outcome on implants and waking up and looking at myself in the mirror, walking round, swimming, laying in bed. Then I would imagine the same with no recon and a slightly less than optimal flat appearance. Dealing with foobs, swimming etc. Wearing summer clothes. That visulization really helped a lot.
DH noted that I (actually both of us) tend to overemphasize negative risks and underemphasize potential benefits. We are both pretty risk averse. So I tended to think that I'll be the one with complications from implants and the one with giant dog ears after no recon! I tried to be as balanced as possible when thinking about this stuff. We mostly hear the negatives on this board and when we do get people happy, they tend to be more recent. The happy campers aren't posting about their recon 5-10 years after for the most part.
Pros for deciding no implants: no followups to track potential ruptures in implant, avoid capsular contraction (sp?), avoid additional surgeries and anesthesia, avoid cutting pectoral muscle. No foreign body in my body.
Pros for deciding for implants: no dealing with prosthesis, not looking at my body flat and scarred from mx, I think I might feel younger with them, daily reminder of what I have given up to cancer.
In the end, I decided that I think about cancer and how it has affected me every day since October 2004 when I was dx the first time. Looking at myself flat wasn't going to change that. As this is a recurrence and I have density in my breasts and there is something small on the other side they can't see and my cancer likes to travel (already in lymph nodes with small cancer), getting bilateral was an easier decision for me - but still not easy! I wish I didn't have to give up sensation but being able to work out with a prosthesis and not worrying about posture problems if I end up not liking prosthesis on a daily basis AND the peace of mind is worth the trade off. My breast were never the main part of my sex life anyway- especially since the first go around.
FWIW, I'm 48, a small b cup and pear shaped too. I was worried about looking totally out of balane top to bottom. Its just another inspiration to lose the last few pounds I've been working on.
I think if I was younger and/or single, I would do recon. If I was much older it would have been an easier decision to say no. But that's for me of course.
In closing - I think its great we have choices despite having to make them in such stressful circumstances. If all people wanted the same things the world would be a boring place. Just wish my life were a little more boring right now!
Annie
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LOL about wishing life were a little more boring right now!!
Please tell me about dog-ears and foobs. I keep seeing these terms and haven't quite figured them out. Are dog-ears skin tags left over from a mx? Are they left intentionally, or are they unintended? And foobs -- are we talking prostheses or recon?? I'm such a confused newbie.
I have been thinking about the visualization even before you mentioned it. I keep trying to imagine how I would look and feel in each set of circumstances. I also am seriously considering the negative consequences. I've had two unrelated surgeries, and I'm not 100% happy with the results in either case, so I can't allow myself to imagine I'll be completely happy with recon, either. (OTOH, I probably won't be completely happy without it, haha!)
This has been dragging for me, too. I found the lump in July and received initial diagnosis in mid-Sep, and I STILL don't know if I'll need chemo or rads. The thought of enduring the whole TE process and gambling on the end result is just -- ugh. In the end I keep thinking that's what I'll do, though, and I'm kind of annoyed at the idea of ending up doing what everyone just assumes you will do.
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Carla-
Check out this link. It tells my story and reasoning behind not reconstructing. I am now almost 5 years out and am still happy with my decision. I still cannot imagine choosing to reconstruct. I understand why people do it but it is not for me. Also, I have no physical limitations, am physically active and just cannot see risking complications.
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I do not have dog ears. My surgeon told me he does not like to leave dog ears behind. I asked him if it is easy to differentiate the breast tissue with other tissues, he said yes very firmly.
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what a sweet DH.
My husband is very comfortable with the fact that i did not reconstruct. Personally I think that is a great decision for later stage gals. We need everything in our arsenal to fight. One nevers knows what might lurk behind those implants.
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Apple - I agree about later stages needing all my health arsenal for fighting. It's always in the back of my mind. If I spent several months recuperating/feeling uncomfortable with post-surgery complicatons or fills and end up fighting another recurrence or mets, I'll be angry with myself for the wasted time I could have spent with my 7 year old feeling better.
Carla - dog ears are tissue at the end of the scars (or under arms). If you are thinking about recon later, I think they may leave skin some to help with future recon. Sometimes I think its just about how you heal and it can be touched up later I think. I was using foobs in my post but you may be right that its mainly used for reconstructed breasts. I was thinking of going flat (boobless) vs. with prosthetic (foob).
Your comment on not being completely happy either way was a thought that helped me make my decision. I told the PS, unless they can get Dr. McCoy's tricorder and wave it at my chest and cure me, I won't be happy. (Star Trek reference for those of you who aren't nerds like me. )
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I am not so sure I would have gone through reconstruction IF I had not been so unhappy with my skin and scar tissue after radiation. A month prior to my bc diagnosis I had shoulder surgery on the same side as my uni. I had a horrible time with my restricted range of motion. That was what drove me to ridding myself of as much tissue as possible that was stiff and stuck to my ribcage and go for a DEIP a year after my mx. It wasn't fun...but I am very happy I gained back mobility. My ps in Boston does more DEIPs than any doc north of NYC. She did an amazing job!
Annie, good for you for not jump to a decision that is not right for you. It's beter to hold off than later having regrets. You can always change your mind down the road and revisit the decision you are making today. It's a little more of a challenge when you decide on a reconstruction that was wrong for you.
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Annie,
another(former but always) Jersey girl here..
I did not reconstruct after bi lateral masts..then 3 years later I changed my mind and did..thats a womans prerogative (sp?) ...
Do what feels best for you now and dont look back!
Gentle admiring hugs,
Marcia
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Kathy - its great to hear you had a good result after removing so much tissue on the affected side. Sounds like you did not do skin sparing - is that correct?
Marcia - Thanks for your post. Did you have rads? What kind of recon did you do? You look awesome in your avatar! I wish I was in sunny Florida right now.
Annie
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Citykitty- I realized I didn't respond to one of your comments ( and I can't seem to figure out how to send a new PM), Re: doing the right thing for the wrong reason for us 'contrarian' ladies. I soo hear you on that. Someone close to me said something in support of recon and I must admit it made me feel the opposite for about 30 secons. If I catch myself feeling like that I make myself really think it through. So far so good.
Annie
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KerryMac, I would like to repeat Boobs-in-a-Box's question: what's a cookie?
Cookie; a large flat biscuit. Cookie, a nasty thing online advertisers put onto your computer to trace what other sites you visit. neither of these is something you can sew into a swimsuit... so what else is a cookie please? I'm wondering because I'm about to buy a swimform soon, after a bad experience when my spongeboob caused an embasrrassing flood of bubbles!
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Correct. I did not do skin sparing recon. It isn't easy making these decisions. I applaud you for taking the route you have taken. You can always change your mind later.
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Thanks Kathy!
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Oh, a "Cookie" is a boob-shaped moulded piece of foam (I think) that they sewed into the lining of the bra part of my swimsuit. It isn't solid, but is quite stiff, and holds its shape. When I pull on my swimsuit, I get the look of a boob, without using a swimform. I am not big on the other side; an A or small B, so it works really well. It is great not having to fuss with a prothesis, I can use a normal swimsuit, and I never have to worry about it falling out. I am thinking of asking if they make me a couple of sports tops as well.
I don't know if I explained it very well!
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Had a left mast. in June. I went 2 days ago to a proper mastectomy prosthesis fitter - I now own a permanent prosthetic that looks PERFECT in a mast. bra - and the bras I bought are the most comfortable I have ever owned!! I'll bet 90% of women are wearing a bra that does not fit them correctly. I could not fathom going thru recon after my mast and rads - options are limited - and I think I can live with this prosthetic, no problem. I look like the old me in the bra, and without, well, who cares? My hubby doesn't, and that's all that matters. No more surgery for me!
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KerryMac, I also am very curious about the "cookie" that was sewn into your bathing suit and hope you can give me/us a little more information. Is the form itself actually sewn in place or is the form placed inside a pocket that was sewn in the swimsuit? Do you know, or can you find out what name brand of form was used? I have a couple different types of foam forms and when I wash them..........they really can absorb a LOT of water. Is this a problem with the one in your swimsuit?
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Annie, along with yourself and others who have posted on this board, I also was faced with making a decision.....unilateral or bilateral? I knew there was no way I could go through with any of the flap type procedures and also was not comfortable with the idea of implants. So 2 years ago I had bilateral masts - no recon. My biggest problem was that I never spoke with more than one "breast" surgeon and didn't fully understand what she would actually do...........or not do as was the case. I was left with large dog ears and grossly irregular chest. Recently I had plastic surgery to tidy it up a bit and I'm much happier with it, but I still feel resentful and angry that it could have been much better in the first place without the need for additional surgery. Other than all that, I'm quite comfortable with my decision and often enjoy the freedom of going form free. (I always did hate bras!)
Best wishes to you!
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