Opinions please

[Mary Jo]

I can't believe I'm even considering this but consider it I am. I honestly don't think I'll really carry through with it but have been thinking about it.

As you know from reading my signature, I have had both breasts removed. I am very comfortable being "boobless" and have been from day 1. Lately however I've been thinking about it and wondering if maybe it's time or if it will ever be time.

I've been talking it over with my husband and he and I talk about the pros and cons of it. I often hear women talk about pain, having to have this surgery or that surgery because of problems and that is a HUGE turn off to me. Having the initial surgery would be plenty of surgery for me.

So, we decided that I would start a thread for those of you who have had reconstruction. How many of you had it at a later date, like I might? Can I still have the reconstruction where they take fat from my abdomin to "make" breasts?

Well, I'll be anxious to hear what those of you who can share have to say.

Mary Jo

[Mary Anne in TX]

I'll be the mouse in the corner listening right along with you! thanks for the question. ma

[Becky]

There is a good site www.breastreconstruction.org (http://www.breastreconstruction.org) that describes the different ways of getting new girls.

I am looking at it too even though I still have both my breasts and had a lengthy discussion with my surgeon on Thursday about it (ie: removal of breasts with immediate reconstruction - she said no - not yet and only to alleviate my fears of a new cancer in the future but...)


Its a good site and really tells you the "you are a good candidate, you are not a good candidate" for each type of reconstruction.

I hope this helps

[Audrey]

Thanks for sharing that website, Becky. I, too, have been considering some more reconstruction (switching from saline to silicone implants and finally adding some nipples) and found those personal stories & pictures really helpful. It's great that we have more options now, even though it makes our decision-making process that much harder.

[Margerie]

I was going to recommend the same site as Becky. I am happy to share my reconstruction story- for people who are considering delayed recon or prophylactic mast. When I was first diagnosed and found out I needed a mastectomy- reconstruction was not on my radar at all. A year after my mastectomy, I had prophylactic mast on other side and then both breasts reconstructed with DIEP surgery. My reconstructed breasts feel and look very natural- with some assorted scars of course.

I tested negative for BRCA 1 and 2, but decided to go ahead with the other mastectomy for several reasons: DIEP is a one time only surgery (one or two breasts), I had enough tissue to do both (LOL no question there), right breast was deemed "no evidence of malignancy" but I had dense, fibrocystic breasts that are destined for lumps and mammos and biopsies and worries, I would have had to have major surgery (lift) to the right breast to get it to match the reconstructed left. I thought my onc or plastic surgeon may have a problem with me deciding to do both breasts- but they didn't hesitate to support my decision. I was 38 at dx- so I had many mammos in my future with a natural breast. And a mammo missed my cancer the year before anyway, so I didn't have a lot of confidence in catching another cancer "early."

The surgery was long (10.5 hours) and there was at least a month of recovery. I had minor (required another surgery) complications. But the results are just fabulous. To be honest, I would tell women not to expect everything to go smoothly. You know like childbirth- doesn't happen exactly as planned, hurts, but is worth it. I would do it again in a heartbeat. (Not the natural childbirth- what was I thinking?)

I didn't realize how much I missed having two breasts until I had them again. I didn't mind the prosthesis too much. But I am very acticve and was self-conscious about it showing. Now I do not have to wear a bra (joy) and I have not regretted doing both breasts at all. I am relieved. And yes, I know there will always remain some tissue/risk, But no more mammos for me. The side with immediate recon still has skin sensation on everything but the "nipple/areola".

After you consider your options, you have to decide of the risk, pain and suffering are worth the end result. I will never forget I had breast cancer. But I feel more like me now, like less was taken away.

[mimiflower07]

hi.. just wanted to say that almost everything Margerie shared is very similar to myself...i do not regret doing both. I had no complication however my back was stiff from walking slightly haunched related to abd surgery. I also have to agree, i really am happy that i have breast again. I really did not think it would matter...but it did.
good luck...its nice to have something to put in my clothes..lol
suzanne

[Mary Jo]

Hello,

Becky thank you for the link to the reconstruction site. It was helpful and I enjoyed the personal stories and especially the pictures to see what might be. My husband enjoyed seeing them as well - also as a way to better understand what might be.

Margerie, thank you so much for your testimony on reconstruction. It was helpful to me and once again, also for my husband.

This is a decision that I'm really trying to pull my husband into. It's been hard for him I think, as he wants to be very careful on what he says or how he responds to the decison making on reconstruction. I know it is very important for him that I know how much he loves me just the way I am because he says it often. From the beginning his words to me were "I don't care about breasts ... I only want to wake up next to you in the morning." However, that being said (and I almost hate to type this as I don't want this misunderstood) but tonight while talking about possible reconstruction I saw a sparkle in my husband's eyes. No matter how much he loves me - and accepts me for me (geez, this is the guy who STILL after 2.5 years has been to every single appointment, scan - whatever - all without one complaint) he is still human. He is a 48 year old man who always loved breasts http://www.her2support.org/vbulletin/images/icons/icon7.gif Well, he still does I suppose but now it's a "look don't touch" kind of love affair. I'm sure the thought of his wife having breasts again must bring a SECRET smile to his heart (not to mention other body parts - sorry - WAYYYYYY more information than needed to be sharedhttp://www.her2support.org/vbulletin/images/icons/icon12.gif) and it's something I do think about when trying to make a decision.

Of course, I wouldn't let that be the determining factor in this decision but my love for him (and his love for me) definitely helps sway me in that direction. It's been 2.5 years of growing and I finally feel that I'm starting to slowly put some of this behind me. It's maybe time to think about "putting me back together again." It's taken me these 2.5 years to mentally put me back together again. It's been a tough journey but a journey (as I've shared before) that I wouldn't give back. It's taught me much - it's helped me face things none of us wants to face i.e. our death and leaving our loved ones - but it's something I've done and feel I am at peace with. I feel I now know my true self - what really makes me tick and am happier and more at peace than ever before. I've take the Lord's Hand and let Him lead me a long the way and He has shown me more than I could ever have imagined.

So, you see - maybe it's time. Maybe I need to feel "put back together again" too. I'm not sure. I appreciate you all letting me ramble and helping me through this with your encouragment, love and support. I'm sure to some of you this may seem vain and inconsequential as your struggles are definitely not vain but about survival but to me it is important and I need to bring it to you in my "little support group" (the only support group I attend) because I believe through major things or little things we are here for each other because in a round about way we are all in the same boat. We all "get it" as others not in our world don't.

So thanks all - thanks for listening and thanks for your support and encouragement.

Mary Jo

[TriciaK]

Dear Mary Jo, my info is not recent, but maybe worth adding: as you may know I had a double mastectomy in 1985 and reconstruction with silicone. Maybe things are different now, but I definitely would not consider silicone again, though I would definitely explore reconstruction as you are. The silicone in my case and also in my daughter's case was a disaster. Hers was purely cosmetic, a year or so before my cancer. She had hers removed several years ago as all the silicone had leaked into her body. She had it replaced with saline and is happy about that , but she strongly believes the silicone leak has caused her serious health problems. My left side is fine, but the right side has leaked and should have been removed but I haven't done it--cowardice, I guess! Probably some of my health problems are due to the silicone. I would recommend saline or the other procedure using body fat. My sister, who had very small breasts, refused any reconstruction, but I really felt like you do, that I couldn't feel whole without reconstruction. Of course at that time there was no hint that the silicone could be a problem of any kind. I enjoy not ever wearing a bra, and even though there is a leak and slight inequality, I don't regret doing reconstruction. I just wish there had been another choice then besides silicone. Maybe there are others who can give you their experience with silicone. I was shocked when it was reinstated after being taken off the market for quite awhile. So my recommendation is to go for the reconstruction, painful as it is, but be careful in exploring what to use for it. Hope that is a little helpful--and best wishes in your decision! Hugs, Tricia

[Louise O'Brien]

Marejo - I can't give you a reconstruction story but I have just made my decision to go ahead with a Diep flap after meeting with a second plastic surgeon last week. In a million years I would never have imagined I would make a decision this soon.

Late last fall, I met another surgeon but left the appointment knowing a) I wasn't ready for surgery and b) even if I was, it wouldn't be done by that man. He came highly recommended but I found him flip and dismissive.

He also didn't do the Diep procedure which I was interested in, but referred me to a surgeon who does. I wanted my husband with me this time because I wanted his "take". I felt it was his decision as well as mine since he was going to have to look after me following the surgery. I also knew he wasn't crazy about my going through any more procedures and I wasn't either. I just thought I'd show up for the appointment, get the information and we'd talk about it and possibly I'd make a decision in a year.

This surgeon didn't try to talk me into it. I found him to be very caring and sensitive and quite thorough in explaining all the procedures. He answered all my questions and I was so impressed by him my gut just said "yes". I knew my husband felt the same way. We didn't even have to discuss it, we were both on the same page.

So it will be done in the fall because I'm still on Herceptin and want a bit of a break when it's over. And four months later I'll go back for a reduction on the right side.

I walked out of that office thrilled and I still am. I could have lived quite happily without any procedure - but perhaps I just needed to meet the right doctor. That might be what you need as well. And perhaps, like me, you'll just know when or if it's the right time.

[Faith in Him]

Dear Mary Jo,

I don't have much to offer as advise as I still have both breasts. I do know that our Lord will lead you in this as He has over the past 2.5 years. I will be praying for you as you go about your decision making.

Hugs
Tonya

[penelope]

I am 2 1/2 yrs out and just finished recon....well I have tatoos left.

It has been a long two years but I am glad that I did it. I had bilateral recon with implants that failed due to infection. Last January I had bilateral diep. It is fantastic. I have a few more scars than most but I am very happy with the results. So much better than implants!!! They feel like I was born with them. I would be willing to share any pictures needed with you or anyone else that needs it as many, many women shared with me. I have a running picture diary from day one to now, including all failed attempts.

It is such a personal decision. I wish you luck in making it.

[Christine MH-UK]

It is so clear and I love the way that they specified who was a good candidate. Also, I have heard alot of obese patients in the UK complain that they can't get the reconstruction they want until they lose weight and how unfair their doctor was being, so it was interesting to see that some procedures are actually not recommended for people with a BMI over 30 (not a problem for me, my problem is more likely to be not having quite enough skin to move around).

I always thought that the easiest thing for me would be to get an implant, but that website made me realize that it would not be appropriate because of all the radiotherapy I have had. I hope I have enough skin for a Latissimus Dorsi flap, since I simply don't have the time to recover from a tram flap. Do you think my four-year old would understand that I wouldn't be able to do everything I normally for a few months? I think not.

I have read that in the long term patients who have implants have high levels of dissatisfaction because the breasts no longer match up after a decade of gravity has had its effects on the normal breast.

[Soccermom]

3 years delayed for me ,marejo. Just completed stage 2 stacked DIEP and glad I did it. I wasn't sure 3 years ago I wanted to reconstruct...it took me awhile to believe that i would live long enough to justify going throught the discomfort of more surgery. I am glad that i did although as Margerie stated, it can be "tough"...but then again none of this stuff is "easy'. Best of luck on whatever you decide!
Marcia

[hutchibk]

I had a rt side mast with immediate recon. "Simple" saline implant. My surgery and recovery went extremely well. Expanders for 7 months and then the implant. For the most part I have had little problem with it (for a foreign object in my body), but there have been many twinges and throbs and itches that I can't control or reach at times over the 4 years. Not only does it not feel natural (not that I expected it to) but it has really started to feel more and more annoying in the last 6 months or so. As time goes on it seems that it bothers me more and more. I am shocked to be saying this outloud, because I have never allowed myself to complain about it before, but I can honestly say that in recent months I have wondered if I wouldn't maybe prefer to have it removed someday and go without. I had capsular contraction within the first year (scar tissue around the bottom of it) and it was pretty painful and had to be removed surgically. It never came back in that area, but I think I have a small amount of it in the upper right quadrant these days too because it just never feels comfortable and when the weather gets too extreme in either direction, I feel it in my reconstruction. Weird, huh?