To recon or not to recon? Overwhelmed!

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hellosara
hellosara Member Posts: 8
edited March 2019 in Breast Reconstruction

Hi all,

Been lurking & reading since my dx last month but this is my first time posting. Long post ahead!

I'm 34 years old. In October I was diagnosed with multifocal grade 3 DCIS in left breast. The mass is 6-7cm in the upper outer quadrant and MRI showed the nipple is involved, and there were "enhancements" (cancer showing up) in the upper inner quadrant too. My surgeon thinks invasive cancer may be present as well as DCIS because of the size of the mass. My breasts are a small A cup so BS is recommending mastectomy, which makes sense to me. I'm getting a 2nd opinion just to cover my bases, but after removing the top half of my breast and the nipple, there would be very little left. I won't know if I will need chemo or radiation or anything about the treatment timeline until after the surgery pathology reveals exactly what is in there. I think delayed recon is not a great option for me since I could need radiation. I'm not a candidate for any of the flap surgeries because I'm thin - no extra fat or tissue anywhere. I'm still waiting for genetic test results. I know the cancer is ER/PR 10%+ which I guess is the same thing as being negative? I don't know what that means exactly re: risk of recurrence or aggression.

I am totally conflicted about reconstruction. Initially, I started reading about recon and was horrified by people's experiences with complications, so I was heavily leaning towards no recon, just staying half-flat and thinking to get a big tattoo on the mx site at some point in the future.

Yesterday I met with my PS for our first consult. He was very thoughtful & respectful, took a lot of time to answer our questions, and photos of his work looked very natural. The photos looked great and made me question my idea of going half-flat. If I choose recon, he recommends tissue expanders followed by silicone implants. He said I can do delayed recon, but the skin would be tighter so the implant-breast would look a bit flatter and less natural. He made it sound like the risk of complications is negligible and recovery is no big deal. But that's not what I'm seeing on boards/forums.

I'm a pretty active person so range of movement and minimizing long-term nerve pain, etc is really important to me. But I still also want to have two breasts, when it comes down to it. I'm realizing that breasts ARE an important part of my current identity (even though at first I was like, screw it, I'll just get a cool tattoo and embrace it - now my feelings are shifting as things sink in). And having two breasts seems like it would make daily life easier (buying clothes, not dealing with a prosthetic - I'm lazy). I just can't tell if it's worth the risks. Or the future surgeries as I'd have to get the implant replaced every 10 years or so.

Specific questions I have:
Do my age or size of breasts put me at lower risk of complications from recon surgeries? I've seen the 33% risk of complications statistic, but do younger women heal faster?

If I get a tattoo and have a recurrence, could the tattoo be destroyed by another surgery?

If I get recon and have a recurrence... what happens then? Do they take the implant out to do more surgery?

Does recon increase risk of developing lymphedema? (PS made it sound like I was not really at risk for lymphedema. BS said she will probably take sentinel nodes. I'm terrified of lymphedema)

Are there any 50+ people on here who got mx & implants as a younger person? What is replacing the implants like?

I know no one can make this decision for me but I'm really struggling with the info available… everyone seems biased in one direction or the other, and I'm feeling totally overwhelmed by the complexity of the different possible choices and outcomes. I've also been blessed to be very healthy up until now, so I have never had surgery before, or even much interaction with doctors - so all of this is uncharted territory for me and very scary.

Thank you so much! Everyone on here is amazing. <3



Comments

  • Dani444
    Dani444 Member Posts: 522
    edited November 2018

    Hello there, so sorry for your diagnosis. I am not sure I can answer some of your questions but I can share my experience, for what it is worth. I am 46 and recently had a UMX with direct to implant. I had a skin sparing mastectomy but was unable to keep my nipple. I am pleased with my implant so far, I am slightly uneven but look fine in clothes. At some point I will probably get a small form to make up the difference. I did get unexpected news that I will need radiation due to positive nodes so I do worry about implant failure. My PS never mentioned that the recon could change my risk for lymphedema and I had 3 sentinel nodes taken at time of UMX. Recovery has not been that bad and this was the first surgery I had ever had. I will say that my plastic surgeon has said that fat grafting to fill in any places could be an option after I finish healing and that insurance would cover anything needed for symmetry in my other breast. She said I could get a lift or a small implant to match the roundness of the implant. I wish you the best as you make this decision, and you will make the right decision for you. The early stages of diagnosis were the most scary for me but things do get better. There is no doubt this is a crappy situation to be in but it sounds likes you have a caring team. Just be cautious where you get your information and that it is a reputable source. This site has a lot of great information and always ask as many questions as you need. This forum has been a lifesaver for me.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    I am also very active, weight training, kayaking ,stand up paddle board etc. I had mastectomy one side, with immediate t.e. placement. I'm about a C cup. I had radiation with the t.e.,came out fine, The exchange surgery was no big deal, also had small implant in good breast to lift it up a little. The symmetry in size and shape was pretty good, and I was happy. The only thing that affected my range of motion was getting axillary web syndrome from having so many nodes removed. Tight cords developed from armpit to wrist, takes a lot of stretching. Able to resume my activities, no problem. But after a year my radiated skin tightened up and made my breast rise up on my chest, so I had the lat flap surgery, and now I have a really good match, and am back to all my activities, and getting back to my weight training. Like you I didn't have any fat, especially since I had chemo first. But I'm very happy with my reconstruction, and didn't have any problems, even the scars are a lit less that I expected.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2018

    I think that one of the best options for "lazy" is a direct to implant reconstruction. That's what I had and one of the reasons was that I could just get everything done at once. I was able to save my skin and nipples and the implant is under the skin instead of under the muscle. That's an important consideration for someone who is very active.

    Answers to a few of your questions or comments:

    Implants don't have to be replaced every 10 years. Most are warranted for that amount of time but expected to last much longer these days.

    People who are younger and healthy generally recover much more quickly from surgeries and with less complications. It's helpful to be at a good weight and not smoke.

    I would think that any possible further surgery could mess up a tattoo. However - many tattoo artists are very good at camouflaging problem areas and could perhaps fix something like that.

    If you have a recurrence after recon, it probably depends on where the recurrence is as to what they do for the surgery and how an implant is impacted.

    I'm not aware of an increase in lymphedema risk with recon vs without. It seems to mostly be related to disruption of the lymph drainage system and can actually be independent of how many nodes are removed.

    I'm sorry that you have to make this hard decision. I would definitely recommend seeing at least two BS's and two PS's for their input. And keeping reading! But in the end - you know yourself the best.

  • hellosara
    hellosara Member Posts: 8
    edited November 2018

    Thanks so much for much for your responses! It is good to see some positives re: implants. I keep trying to remind myself that people who are on threads to share info & support are often there because they are having issues, and that people who are experiencing smooth sailing probably don't post as often about their implant experiences. But it's hard to remember!

    CaliKelly, what was the lat flap surgery like? How was your recovery?

    Thank you!!!

  • Mominator
    Mominator Member Posts: 1,575
    edited November 2018

    hellosara,

    I was about to write a long response to answer your questions, but NotVeryBrave already did!  I agree with her answers. Also, please note that past statistics about implant replacements may not apply to newer implants, which are designed to last longer. 

    There are members here who have had their implants replaced, including myself. My implant was replaced because of capsular contraction, which is when scar tissue forms in the capsule, or pocket, and moves the implant out of place. No one knows why the scar tissue forms. In my case, it formed around the left implant, and pushed the implant up. The correction for that is removal of the implant, removal of the scar tissue, and replacement of the implant. The surgeon usually uses the same scar to make the incision. My implants were placed Jan 2016, the left was replaced June 2017. My breasts look as similar now as before replacement. . 

    Best wishes on your decision,

    Madelyn 

  • swg
    swg Member Posts: 461
    edited February 2019

    hey, just wondering what you decided, and how your MX went!

  • conscorner
    conscorner Member Posts: 23
    edited February 2019

    I'm sorry that you are going through this. So many questions and emotions, aren't there? I can only comment on my experience which was 11 years ago. I used by lats and silicone implants. I was also quite thin and actually didn't realize that they take out the lats completely and put them in the front. I wouldn't recommend that at all and if I could do it over again, I would have chosen the tissue expanders. My back is forever changed. Anyway, I enjoy having breasts, even though they have no feeling. I look good in clothes and most people I'm sure have no idea that they aren't real. I think I made my decision too quickly and it's good that you are really investigating and researching. Good for you. I hope all goes well. The important thing is to be here and continue enjoying our family and friends. By the way, I haven't changed the implants and don't plan on, unless I absolutely have to.

  • BrinkOfEternity
    BrinkOfEternity Member Posts: 207
    edited February 2019

    Just wanted to mention that my tumor was also only 10% ER+ from biopsy but after neoadjuvant treatment of 12 weekly Taxol it shrank and is now 30% ER+ from surgery pathology. This would make endocrine therapy worthwhile. Just keep that in mind as things may change. My MO and I both believe the chemo probably killed off the “more aggressive” tumor cells leaving behind more of the ER+ cells.

    I opted for UMX with immediate TE placement and DIEP flap later on. My reasoning is primarily about low long-term maintenance. I don’t want to worry about implant leakage or replacement and would rather have a bigger surgery now while I’m younger. If I were getting BMX I probably would go flat, but being half-flat just seems too difficult to adjust, especially when I’m in a swimsuit..

  • Kathyt865
    Kathyt865 Member Posts: 8
    edited March 2019

    Wow! Thank you to NotVeryBrave! Excellent answers. Just to add my 2 cents....I had a bilateral mastectomy in July 2018. I had read a lot about straight to implant surgery and thought that was what I wanted. I learned that basically because your breast skin isn't expanded as it is when tissue expanders are inserted - the max size implant would be an approximate B cup. That may be perfect for you, it wasn't for me to look my normal. I would ask if a skin sparing mastectomy is an option...then straight to implants if that is your choice. Alternatively, I have seen some absolutely beautiful tattoos. Don't stress too much. Though we are all different I can tell you I took a couple Tylenol after my mastectomy....nothing needed after my exchange. My ONLY issue was the tissue expanders. The very best to you.

  • Kathyt865
    Kathyt865 Member Posts: 8
    edited March 2019

    Wow! Thank you to NotVeryBrave! Excellent answers. Just to add my 2 cents....I had a bilateral mastectomy in July 2018. I had read a lot about straight to implant surgery and thought that was what I wanted. I learned that basically because your breast skin isn't expanded as it is when tissue expanders are inserted - the max size implant would be an approximate B cup. That may be perfect for you, it wasn't for me to look my normal. I would ask if a skin sparing mastectomy is an option...then straight to implants if that is your choice. Alternatively, I have seen some absolutely beautiful tattoos. Don't stress too much. Though we are all different I can tell you I took a couple Tylenol after my mastectomy....nothing needed after my exchange. My ONLY issue was the tissue expanders. The very best to you.

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