Reconstruction - would you do it the same way again?

I also had DCIS, although without previous diagnosis. I always knew that if breast cancer came knocking at my door, I would be aggressive. I am also 44. By the time my mother was my age, she had several recurrences of Br. Ca. She died at 49.

I remember looking at all the options and thinking that somehow I would be rescued when the obvious "best" one would be presented to me. It never was. I had genetic testing and while I was waiting for the results, my breast surgeon had me visit the PS. She knew I was considering BMX and wanted me to get all the info I could about all options while I was waiting.

He presented all of the options in their entirety and then asked what I was thinking, questions, etc. I said, "I think these are horrible choices, but honestly it doesn't matter if you had told me you were going to do the surgery with a rusty machete and no anesthesia. I'd still have to do it." (Can you tell I was feeling a little bitter?!!)

My surgery was 6 weeks ago. I had a BMX and TE placed in preparation for an exchange surgery in a couple of months. It was a lot more difficult than I thought it would be. I am not sure why....so many people do just great with this surgery. I actually did, too....surgery went well, healing has gone well, no infections, etc. Thank goodness! But, I have had a lot of pain. PT has helped tremendously with that, but it took a little more than 4 weeks to figure that out.

Would I do it again? Yes....for the same reason I did it initially. I didn't feel I had another choice. I am grateful that breast cancer will not haunt me like it did before. But, I am still sad....and I still wish it had never happened. I am still really struggling with this new body under construction. I am REALLY struggling with the lack of feeling in my breasts. Nobody else seems to have a problem with that. I haven't found it mentioned as an issue for anyone throughout this entire discussion board. I suppose that will get better with time. It sounds like we may have some things in common....except I am a couple of weeks ahead of you. This forum has been a huge support to me. Good luck in your decision!! It's one we all surely never wanted to face!!

I had initial BMX w/TEs place over 3 years ago, then exchange with saline implants several months later. There were a few issues/problems along the way. Needed a revision on each side. I downsized and am loving the fact that I do not have to wear a bra unless I want to (haven't worn one in over a year now) and have more options with clothing.

I do miss the feeling when I am intimate with my DH, but we find other things to do to make up for it

Would I do it again? Yes, for me this was the best type of reconstruction so I really don't think about other types of reconstruction. I believe an important factor in my experience was feeling very comfortable and confident with my PS, and when issues did arise we talked about it and came up with an action plan on what to do to address them. I had some PT which helped me to get movement back while also teaching me about LE, and then started doing Yoga when it was approved which really helped with flexibility and getting strength back into my arms.

Now that that time has passed I have honestly forgotten sometimes that I even have implants.

There is a wealth of information you can search for on these discussion boards. The support and advise I received here really made a difference on how I approached my decisions and addressed the issues which did arise.

Ask your PS what options are available to you, and don't hesitate to get another opinion from another PS.

I had a staged DIEP - a skin sparing BMX with TE to get me through active treatment, then a DIEP once active treatment was done. I went smaller - from droopy DD to perky Bs. I skipped surgical nip recon and got 3D tats from Vinnie Myers. I'm very pleased with the results (the tummy tuck was a nice bonus), and like so many others I honestly forget most of the time they are not the original "girls".

Like so many others have said, you need to have a great relationship with your BS and PS. When I was dx, I went to Hopkins, an NCI-designated cancer center. I met with the BS and PS the same day. My BS reviewed me case and presented me with all my surgical treatment options (lumpectomy, UMX and BMX) with the pros and cons of each, then I met with the PS who presented me with the full range of recon options - no recon, immediate implants or DIEP, delayed implants, or staged DIEP - and the pros and cons of each of those. I felt that I was given full information before making my decision. If you feel rushed or your surgeons seem to be pushing you one way or another and not listening to your concerns, then absolutely get a second or even a third opinion. You're the decision maker for your medical team, not your doctors.

cjc, my implant is anything but bouncy! It's not as hard as the expander, but it's just as locked in place. No movement at all. I'm small breasted and have a small implant; maybe something larger would have more movement but I still don't think you should expect anything like the bounce and movement of a natural breast.

jmb, I had implant reconstruction for a number of reasons. First, the only autologous breast reconstruction I could have had was the I-Gap with tissue taken from the bottom of my butt. I didn't have enough body fat anywhere else. Since I was having a single MX, I didn't want to end up with an uneven butt - one side that had some fat removed, and the other side with all the fat there. Frankly I also didn't want surgery on both my front side and my back side. And when I really thought about it, I didn't want to mess up and scar any other part of my body - I wanted to leave the surgery to my breasts only.

I also went into reconstruction not looking to recreate as perfect a breast as possible; I just wanted something to fill my bra so that I wouldn't have to deal with a prosthesis every day. I knew that whatever I did, I would lose all natural sensation and it would never be a 'real' breast, so I wasn't willing to go through a major operation and impact other parts of my body just to create a better looking fake breast. An implant was fine for my needs.

I did give myself a little treat - I also had a small implant added on my good side, so I ended up just a little bit bigger than before (but still small - a full "B" instead of a small "B" or large "A").

I knew that implant reconstruction wouldn't feel natural, but I underestimated how unnatural it is. Eight years out, I'm certainly used to it, but in hindsight I think that if I could have talked myself into no reconstruction, that might have been a better choice. But at that time, I couldn't deal with the idea of being flat, and since I had a single MX, even now I don't know that I would go for it - flat on both sides would be fine but for me, not on one side only. And I wouldn't remove a healthy natural-feeling breast just for the sake of symmetry. So I probably would make the same decision again.

Mnmbeck,

Hi. Did you have your nodes checked? I am scheduled to have a pbmx inbjanuary due to a diagnosis of ADH, lcis and dcis... I am concerned that even though the bs feels she got it all if I don't check the nodes I will always wonder. At our consultation she seemed reluctant because of the chance of lymphedema (my mom had that with her surgery....) she had invasive. I just don't know if I should push it, it's for peace of mind but do I want to deal with lymphedema... There's always that chance. But then again lymphedema is better than missing invasive... Ugh!!!!

Mommyathome, mnmbeck's signature line indicates that she had 4 nodes removed. Most women who have a MX for DCIS do have an SNB - but that's because they have not already had surgery in which the DCIS was removed (and no invasive cancer found). Most women who have a MX for DCIS go into the MX surgery either straight from a stereotactic biopsy, or after a lumpectomy in which they did not have clear margins. Both of those situations present a greater risk (than your situation) that invasive cancer might be found in the breast. Your situation is different because your DCIS was removed during an excisional biopsy, and you had clear margins. In many ways your situation is more similar to that of someone who is having a prophylactic BMX. By the way, the risk in not having an SNB is not that some invasive cancer will be missed. All your removed breast tissue will still be checked for invasive cancer. If none is found, then there is no reason to check the nodes. But if any invasive cancer is found in your breast, then you can still have your nodes checked afterwards, however you will need to have more nodes removed than just an SNB. So nothing will be missed by not having the SNB - you just run the risk of possibly needing to remove more nodes later. However, to the suggestions in response to your questions in the DCIS forum, have you given consideration to the possibility of having your sentinel nodes marked prior to surgery but not removed unless invasive cancer is found? If your doctor can do that, it seems to be the ideal solution. Check back at that thread.... there's some good discussion about that option.

jmb5, sorry for moving your thread off topic.

Thanks Beesie,

There is so much to think about!! Obviously I want to educate myself and I feel I'm doing that through the website! I also want to trust my doctors, and I do, I just don't want to miss anything. I seriously lay in bed thinking and thinking... I've been averaging 0-3 hours of sleep a night. It got to the point that the doctor prescribed Valium so I can sleep. I'm just scared!!!! I saw my aunt deteriorate quickly and I want to make sure I do everything I can to make sure I'm healthy and here for my four kids.

I had a bmx with tes and basically had problems with pain while the tes were in. I finally had my exchange surgery and was happy until 6 months later when I was hospitalized for cellulitjs.  After another 3 months I got it again cellulitis/lymphangitis and this past Wednesday the rigbt implant was removed.  The first time i looked at it I was extremely shocked and upset. It looks really deformed and caved in and I really dont care anymore if I ever getanother implant. As I reflect on the past year and a half I wish I would have just had the bmx with no reconstruction.  My experience is not the norm. However I wish i would have known that thes things could have occurred. Because my first bout of cellulitis was so long after surgery it isnt from the imant and the doctor said it could continue to happen even after the implant is removed.  I had radiation to the breast and alnd and im not sure if they are the cause.  Oh im also 43. Please dont let my story scare you because it is rare but i wish someone had made clear to me that problems do sometimes occur. Healing hugs to you.

jmb, I had a single MX so my situation was different. I was in hospital for one night but was sent home the next morning, feeling just great. I had virtually no pain beyond that one night.

Getting in and out of bed was a challenge - and I would imagine it will be much more of a challenge for someone who has a BMX - often it's suggested that women who have a BMX sleep in a recliner for a while. I also wasn't able to drive for about 2 weeks; the issue was turning my head to see what was beside the car or behind the car - backing up was really difficult. That type of head movement pulls and strains the chest muscle, and that's a no-no. After 2 weeks I did start driving but I made sure I always pulled into parking spaces where I could drive straight out, rather than back up.

Other than that, I could do just about anything right from when I got home. My mobility - including my arm mobility - was great. I did however have to follow the standard 6 week rule of "no stretching, no reaching, no heavy lifting, no pulling, no pushing, etc", and that's what restricted me more than anything. The reason for that rule is simply that it takes 6 weeks for an incision to heal enough to regain approx. 90% of it's original strength; after a MX, you have both internal and external incisions. Even if you are feeling great, the last thing you want to do is separate or compromise any of your incisions, especially the internal ones that you can't see. So prior to surgery I set up at home so that everything was stocked up and within easy reach (a few dishes on the counter, pots and pans on the stove, heavy items like detergent transferred into smaller, lighter containers, etc..). My PS was very clear that vacuuming was off limits (the pulling and pushing motion isn't good) and I couldn't do much cleaning because that involves reaching and stretching... but honestly, not cleaning the house for a few weeks wasn't too much of a hardship.

The day after I got home, I was out taking a walk in the neighbourhood. And because I couldn't carry heavy bags, pretty much every day or two I walked over to a grocery store and bought just a couple of items that I needed - something nice and light that I could carry home. Even on the first day out of the hospital, no one would have had any idea that I'd just had major surgery.

Of course, everyone's experience is different. Some women do experience more pain and do have much more difficulty with mobility. But from what I've read on this board, my experience was not that unusual so hopefully you will find it to be much easier than you expect.

Here's one important thing to understand, however. If you are having a MX or BMX with reconstruction, know that the surgery itself is just the first 5% of the process. I think that's what most women don't appreciate going into it. I read so many posts from women who've just had the surgery, and if they've found it to be easy, they talk about it as though the whole process of an MX or BMX is just a breeze. But the surgery is just the start of the process. There is a lot more than happens over the next months, whether it's with fills (with expanders) or more surgeries, and healing from the surgeries, and the settling of the breast and whether or not the appearance is what you want, getting used to living with the change to your body and the numbness and lack of feeling, etc.. Some women have it easy all the way through, others have it easy at the start and then run into problems months (or even longer) down the road (as happened to melmcbee), others have problems at the start and then everything settles out just fine. There is unfortunately no way to predict what it will be like for any one individual until they go through it themselves.

As for the SNB, the following discussion thread in the DCIS forum might be helpful to you. On the second page of the thread, the most recent 12 or 15 posts are talking about the issue of whether or not to have an SNB after an excisional biopsy found only DCIS and no invasive cancer (which is different than a situation where someone has only a needle biopsy prior to a MX). There is an interesting new option that might help you avoid having the SNB, however I don't know that many doctors are doing this yet.

http://community.breastcancer.org/forum/68/topic/814240?page=2#idx_60

I was diagnosed with DCIS this spring following my baseline mammogram. My choices were to do a lumpectomy with radiation and hormone therapy, or to do a mastectomy. My breast surgeon partners with a plastic surgeon so in that first conversation, he talked to me about the possibility of nipple and skin sparing reconstruction.

I opted for a double mastectomy. I have auto-immune issues so radiation wasn't a good choice for me, and even the birth control pill gives me massive migraines, so hormone therapy did not sound like a good idea. Besides all of that, vanity played a big factor. A double reconstructive mastectomy would give me perfect, perky boobies that matched one another, and I could choose to go a bit bigger than my original A/B cup as well.

I asked for some time between diagnosis and surgery - about 6 months actually. I have young kids and wanted to wait until they started kindergarten and I could line up childcare. DCIS is somewhat controversial; some studies suggest that it may not necessarily ever turn into invasive cancer. I'm glad I took that time to set up my life so that I was more prepared for surgery. That's of course a decision you'd personally have to make but thought I'd share what I did.

My mastectomy was at the end of August. I had much the same experience as Beesie above. It was a tough surgery, but do-able. The DCIS spot was actually much bigger than it had appeared in the ultrasound so it's good that I had a mastectomy. They did a SNB and it was negative.

I only expanded to 400cc. The expansion process was again tough, but do-able. By the time my exchange surgery came around I was very happy to get the expanders out.

My exchange surgery was a week and a half ago. My PS put in Sientra gummies and did fat grafting. This has been an easier process for me than both the mastectomy and the expansion process.

My breasts look great already, even with the swelling and bruising. I never have to worry about breast cancer again. My treatment only consisted of surgery, which for me was relatively easy compared with how I imagined my other options. I'd definitely do this the same way again and am happy I made this choice.

I do think a lot depends on your surgeons. I feel very lucky to have had fantastic surgeons that were well-informed about the latest techniques and did everything possible to make it a comfortable experience with a great result. So I'd say the #1 decision you should make right now is to find the best doctors you can find and take comfort in their advice.

Good luck to you. It's a scary place to be. For me, it all worked out. I'm sure it will for you too.

For anyone who's had or who is planning to have a MX or BMX, it's important to know that you can still develop breast cancer - not just a distant recurrence (for those whose diagnosis was invasive cancer) but even a localized, in the breast-area recurrence or new primary. Of course in most cases the risk is quite low, but this board is full of women who've unfortunately had this experience.

This isn't to discourage anyone from the MX or BMX option, but is just to alert everyone who's had or who will be having this surgery that they need to remain diligent and they need to continue to check their breasts. My breast screening facility has now started to do mammos even on reconstructed breasts (surprisingly not painful or difficult at all, even with an implant reconstructed breast). The last thing you want is to think that you never need to be concerned about getting breast cancer again, stop checking your breasts, and then develop a recurrence or new primary that isn't found until it's become an advanced cancer. I have unfortunately seen that happen to more than one woman on this board.