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Jenny in Florida

UPDATE with Decision - New Breast Cancer Treatment WWYD Question

Mastectomy: What would you do (or have you done)?  

29 members have voted

  1. 1. If you needed a unilateral mastectomy, would you:

    • Stick with the unilateral, keep the other breast and have reconstruction to replace the removed breast?
      4
    • Opt for bilateral (remove the second, healthy breast, too) and have reconstruction on both sides?
      8
    • Have the unilateral mastectomy and not have reconstruction?
      8
    • Have the bilateral mastectomy with no reconstruction?
      9


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UPDATE: 

Because I know I get frustrated when people ask for help making a decision and then never share the outcome . . .

Thank you all again for helping me to talk and think through this dilemma. After much deliberation, I've decided to proceed with the bilateral mastectomy. The tipping point for me was learning that, because I have had breast cancer once, I will be considered high risk for as long as I still have breast tissue. That would have meant scans -- likely alternating mammograms and MRIs -- every six months for the rest of my life. Given than I have been told I have dense or cystic breasts, I feel like the odds of finding "something" periodically on those frequent scans and needing to do the whole biopsy thing again in the future are just too high to make it attractive to hang onto that breast. If I have to go through this at all, I would prefer to do it and be done.

For the moment, I am leaving open the possibility of reconstruction. I did meet with the plastic surgeon, who agreed that implants would not be a great option for me. I have no desire to go through the expander stage of weekly visits, the additional risk of infection and the potential need for maintenance or replacement in the future. The DIEP flap procedure, while more intense and invasive up front, is then "done." (Some women apparently do go back for a "touch up" of the abdomen incision and/or to even up breasts if things get unbalanced once they "settle," but that is entirely discretionary.) I saw pictures of the results, and I feel it would be a good option for me. 

Apparently, because there is still the possibility I will need radiation, we could not proceed with immediate reconstruction even if I were sure I wanted to do so. The plan is for me to touch base with the plastic surgeon in two or three weeks once I know for sure what the post-mastectomy plan is and whether I want to do the reconstruction.

 

ORIGINAL POST:

As I've shared elsewhere, I was diagnosed with breast cancer a couple of months ago but had been operating under the assumption that I would be doing lumpectomy + radiation. This week, I learned that the additional mass I had biopsied last week is also cancerous, and I am now looking at mastectomy. 

Although there is no medical reason to do so, my surgeon has offered me the option to remove the other, healthy breast at the same time. I also need to decide whether I want to have reconstructive surgery, whether that winds up being for one breast or both.

My initial reaction when the PA asked me during the phone call when we discussed the biopsy results was to say no to removing the second breast, because it goes against my nature to do anything more invasive or complicated than is actually, medically required. 

I also had a knee-jerk reaction against doing reconstructive surgery, because I don't like the idea of implants. And I feel even more strongly about that after chatting with my nurse coordinator about the process and the fact that implants need to be replaced every decade or so. 

I was briefly attracted to the idea of the DIEP flap reconstruction, but the more I read the less appealing I find what sounds like a pretty extensive process.

All of which seems to bring me back around to unilateral mastectomy without reconstruction . . . except that, when I actually picture that, I am not sure how I'll feel about it.

So, what would you do, if it were you? 

Or, if you have faced a similar situation, what did you choose? And are you content with your decision?

Edited by Jenny in Florida

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Obviously we never know for sure until we are in the moment, but all things equal and from a hypothetical standpoint, I'd not remove the other breast unless there was some evidence to support the recommendation. And I would do reconstruction, because for good or bad having my body look like what my mental image of my body is would be important to me. Not to mention how clothes fit etc. 

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Bilateral without reconstruction. Implants can block some imaging. I would probably have medical tattooing, iykwim. 

My BFF had DIEP flap; she traveled to New Orleans for a specialty clinic that specializes in the procedure.

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My maternal cousin had breast cancer in only one breast. She opted to have both removed. That was a good choice on her part because during the surgery, they discovered a second, more aggressive form of cancer that hadn't been imaged prior to surgery in both breasts. So, based on her situation, I would opt for bilateral. It would also eliminate future worry about breast cancer in the other breast.

I can't speak to reconstruction. I *think* I would choose not to have reconstruction.

I'm so sorry Jenny (and those who have personally experienced cancer) that you're having to travel this path.

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I was actually offered mastectomy or to try neoadjuvant chemo and then hope the tumor shrink enough for lumpectomy. For mastectomy, I had decided on unilateral with no reconstruction. However I was already flatter than A cup so I didn’t see a need for reconstruction if I had to go for a mastectomy. My oncologist did mentioned that women with bigger cup size do tend to opt for reconstruction if they go for unilateral because of the mental/emotional discomfort with the unevenness. 

Your second and fourth option are the same? I do see people in the waiting room with me who had opt for bilateral with no reconstruction. They are all on the petite side though. 

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If genetic test showed BRCA I'd do bilateral.  If not, unilateral.  

No reconstruction, especially if it was unilateral and involved a reduction.

People I know who did bilateral with no reconstruction were either A or D cups. The Ds kinda liked the idea of not having any more back pain, and no one wanted any more surgery.

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I would only have a bilateral removal if I was BRCA1 positive. Even with BRCA2, I think I would keep the healthy breast based on what I've seen with research. If I knew my tumor type was really aggressive, I might think about bilateral I guess. It would be hard for me to do that without clear benefit.

I think I would not reconstruct immediately. My understanding is that a person can later, even much later, reconstruct if they choose. I would make sure my surgeon knew that I wanted to leave that option open later in case it would change the way the mastectomy is done.  I'm a relatively small cup size. I might feel differently if I were larger. 

 

Edited by sbgrace

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7 minutes ago, HeighHo said:

If genetic test showed BRCA I'd do bilateral.  If not, unilateral.  

No reconstruction, especially if it was unilateral and involved a reduction.

People I know who did bilateral with no reconstruction were either A or D cups. The Ds kinda liked the idea of not having any more back pain, and no one wanted any more surgery.

 

I'm on the D end of that and yes, bilateral with no reconstruction is what I think I'd go for. (I don't like implants. I don't like having to replace every 10 years. And I wouldn't want the worry that something was missed in the other breast)

Edited by vonfirmath

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27 minutes ago, Arcadia said:

Your second and fourth option are the same? I do see people in the waiting room with me who had opt for bilateral with no reconstruction. They are all on the petite side though. 

 

Oops, you are correct. Thanks for pointing that out. That's what happens when you are trying to talk and type at the same time.

The fourth option was supposed to be bilateral with no reconstruction. I fixed it.

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I’m not comfortable voting because this is a really big and personal decision. I haven’t done the research that you have, so my hypothetical opinion about my own choices is really uneducated. That said, my knee jerk is to do the bilateral with reconstruction, almost completely [because it would be important to me to return my body to how it looked prior to treatment].

 

Edited by sassenach
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I've seen some beautiful tattoos covering scarring where women chose not to undergo reconstruction. 

I don't know if that is something you would be interested in, but choosing to forgo reconstruction is a valid choice, and one that doesn't make women any 'less'.

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Hi there,

I don’t post very often but I’ve been a member/lurker for many years. I’ve had cancer twice— as a child and as an adult. That certainly colors my advice. 

In 2016 I was dx with stage 3 endometrial and stage 4 ovarian cancers. I was treated at Sloan Kettering in NYC. Sloan has a reputation for being aggressive and I chose the most aggressive treatment offered. I had no choice on the surgery, it was an automatic tah-bso but with chemo I chose the most aggressive treatment (dose dense chemotherapy versus standard protocol).

In your shoes I would go for a bi-lateral mastectomy and reconstruction. Given the extent of disease in one breast I would be concerned that there is already imperceptible disease in your other breast. I believe you mentioned there may be bone mets as well, that would only strengthen my decision to have a bilateral mastectomy.  

Have you had your tumors genetically mapped yet? I would discuss this with your surgeon and medical oncologist. Are you estrogen or progesterone positive? HER2 negative or positive? 

I am so sorry you’re dealing with this. I know only too well the emotions that follow a cancer diagnosis. 

My best,

Ryan

 

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Completely uneducated on this topic, tho both my cousin and my aunt (same family) had breast cancer. I voted reconstruction, one breast removed, but people are making really good points about imperceptible cancer in the "healthy" breast--

Whatever your decision, I wish you the best. ❤️

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Personally, I would go with bilateral, because otherwise the sensation of "ticking time bomb" would cause me a lot of anxiety.  And I would do reconstruction because I think it would be important to me to look as much as possible like I did before.  

 

But there is no right or wrong answer!

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I would go with bilateral mastectomy with reconstruction. I would not want to go through chemo, surgery, and potentially radiation more than once if I could help it.

The nurse was wrong to tell you that implants need to be replaced every 10 years. That was the case in the 1960s and some of the 1970s. The current implants have a rate of approximately 6% to 12% rupture in 10 years based on clinical studies and depending on manufacturer. The article quoted below has failure rates for multiple manufactures, this is just a sample:

"A 9-year average core study of Sientra cohesive gel implants published in 2016 consisted of 1,788 patients with an MRI cohort of 571 patients. The 8 years MRI cohort rupture rates were: 6.4% for primary augmentation, 5.2% for revision augmentation, 2.8% for primary reconstruction and revision reconstruction data is not currently available. Additionally, rupture rates in the 10 years MRI cohort for primary augmentation was 9.0% "

source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5409893/

There are no issues with imaging of the implants themselves. They do not impede MRI or other scans. They are imaged on a regular schedule to check for integrity. 

If you were to choose a flap-type reconstruction, it can be easier to recover if the tissue is taken from the back rather than the abdomen according to an acquaintance who's had both types of flap surgery done. Please note, however, that the flap surgery may need to be done twice to achieve the desired look because cells tend to die at rather high rate.

 

 

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I haven't dealt with these decisions personally but my mother and her four sisters all had breast cancer within a two year period and I helped my  mom decide how to proceed.  Each sister did something a little different.

Mom mom who was 68 at the time just did unilateral mastectomy with no reconstruction.  We ultimately decided to go this direction because she couldn't do the less invasive reconstruction option that her sisters did due to having breast cancer at 45  with lumpectomy and radiation as the treatment then.  So that only left the much more invasive approach with the more extensive healing times.  My dad didn't want her to go through all that so his vote was no.  It sounded like it really added to the amount of time healing and she didn't want to spend any more time than necessary.  She wanted to heal and move forward and not dread the future surgeries required and longer healing time.  We found that each time she had breast cancer that it took about two years to fully get back to "normal".  Removing a healthy breast didn't sound necessary.  I will say though that dealing with a prosthetic breast is a pain at times.  My mother(and her sisters) is very small an A/B cup and so  it always seems a bit bigger and sometimes swimming it doesn't stay in place.  She isn't comfortable going with out and being lopsided though.  Make sure you do physical therapy after your mastectomy heals though to get full range of motion back.  That is something we didn't realize at first and she struggled until we did that as she's was/is a very active person who plays tennis, walks, does curves, etc.

My aunts who did reconstruction are happy with it but the process wasn't pleasant and one continually seemed to deal with infection and things that would delay her, the other breezed through it.  One aunt did bilateral mastectomy in hopes she wouldn't have a re occurrence since watching my mom she felt it was definitely a possibility. ( my mom had it in the same breast twice, the other breast is still fine) Some did chemo and others did not.  My mom was fortunate that she never did chemo.

I'm sorry you're having to go through this, it is a lot of information and decisions all at once and they want you to decide so quickly.  

Edited by Splash1
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49 minutes ago, RosemaryAndThyme said:

 

There are no issues with imaging of the implants themselves. They do not impede MRI or other scans. They are imaged on a regular schedule to check for integrity. 

 

This is not correct. 

https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/mammograms-for-women-with-breast-implants.html

https://www.appliedradiology.com/articles/mr-imaging-of-breast-implants-useful-information-for-the-interpreting-radiologist

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Wanted to add--the imaging clinic I use will always require ultrasounds in patients with implants and if a MRI is done, it's usually done with contrast.

Plus, if you know that you tend to scar from previous surgeries, your body may form tissue around the implant as it heals post-op. That tissue can also complicate imaging. This is a point definitely worth discussing with your local radiology group as part of your reconstruction planning.  The advice I was given was that if I felt in my gut that I needed implants to feel whole---go for it---that was priority #1, but if I had mixed feelings, this was additional information I should consider. 

(My biopsy was benign, but it was a convo I had during imaging and biopsy.)

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Are there any breast cancer boards you've found where you could ask people who chose not to do reconstruction how they felt after the fact and how people felt who did and if anyone had any regrets or recommendations?  I guess I wouldn't take anyone's thoughts about they would do too seriously unless they've actually walked this road personally or with a close family member.  

Is there decent data on choosing bilateral mastectomy over single breast for your type of cancer and odds of reoccurance?  Has the doctor made a clear recommendation?  

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I'd definitely ask the surgeon what their experience is, are they seeing women with your type of cancer and presentation come back with the other breast having cancer? Is there research on that? If not, I would look at the choice as a mental health one. Would removal give you more peace of mind or more trauma? If there IS evidence on that, then I would of course consider that above all. 

Also, as someone who would absolutely do reconstruction (again, for mental health reasons that I am not at all ashamed of - I think sometimes we shame women who want reconstruction as "vain" and that's crazy talk) if implants impede imaging would it be riskier to remove the healthy breast and put in an implant or riskier to keep it but have better imaging? I don't know that answer,r but I'd want to discuss it with the doctor.

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26 minutes ago, Ktgrok said:

I'd definitely ask the surgeon what their experience is, are they seeing women with your type of cancer and presentation come back with the other breast having cancer? Is there research on that? If not, I would look at the choice as a mental health one. Would removal give you more peace of mind or more trauma? If there IS evidence on that, then I would of course consider that above all. 

Also, as someone who would absolutely do reconstruction (again, for mental health reasons that I am not at all ashamed of - I think sometimes we shame women who want reconstruction as "vain" and that's crazy talk) if implants impede imaging would it be riskier to remove the healthy breast and put in an implant or riskier to keep it but have better imaging? I don't know that answer,r but I'd want to discuss it with the doctor.

Ooh, maybe that was a bad word choice on my part above? It’s easy to throw that word around when thinking of myself but it certainly sounds ugly when applied to anyone else!

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My sister had bc at 31 and had a lumpectomy. She got cancer again with metastatic cancer in her brain, lung, bones, liver, and same breast after chemo, radiation, and Tamoxifen for 4 years.  The new immunotherapy drugs kept her alive and pretty well for almost two years. If I get cancer I want them to take them both off even they are an integral part of my being. I couldn't live with a ticking time bomb. I/we don't have any identifiable mutations.

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When I spoke to the surgeon's PA about the test results and the change from lumpectomy to mastectomy, she said right up front that there is no medical reason to remove the second breast. The cancer I have is not especially aggressive; the surgeon suspects that what is there has likely been brewing for some time. The tumors are estrogen and progesterone receptive. HER-2 negative. Both breasts have been scanned with by mammogram, ultrasound and MRI, and there is no indication of any issue in the second breast . 

Implants are an absolute non-starter for me. I would feel much more "weird," for lack of a more precise term, about having a foreign object in my body than I would wearing a prosthetic or just "going flat."

At this point, I think the default position is to do the unilateral, no reconstruction. If I try to look at myself from the outside, in the context of other decisions i have made about my life and body, that feels like the one that is most consistent with my personality. It's the least invasive, most conservative option that will address the medical need and get me back on my feet and into my life with the least possible amount of trauma and fuss.

Plus, I am weirdly attracted to the DIY aspect of being able to knit or crochet prosthetics ( https://www.knittedknockers.org/ ) to match the season and/or my mood.

However, I have asked for an appointment with the surgeons who do the DIEP flap just to be sure I have done my due diligence.

Keep the votes and replies coming, please. I'm finding the discussion extremely helpful!

Edited by Jenny in Florida
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1 hour ago, sassenach said:

Ooh, maybe that was a bad word choice on my part above? It’s easy to throw that word around when thinking of myself but it certainly sounds ugly when applied to anyone else!

I should have clarified - I absolutely didn't mean anyone here, in this thread, was making it seem vain to have reconstruction. Just society at large, not here. I think it's a very personal choice with a multitude of factors, probably including at MINIMUM age, breast size, body type, personal history, etc etc etc etc. 

 

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I don’t know for sure, but I lean bilateral and no reconstruction. I am an A cup now, at 54, and I purposefully design my wardrobe to be able to go bra less as often as I can. Being flat with no bra sounds really good to me. I would probably still get something for t shirts and such, but I would certainly accelerate my bra less wardrobe choices. 

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43 minutes ago, livetoread said:

 I would probably still get something for t shirts and such, but I would certainly accelerate my bra less wardrobe choices. 

 

I wear boys size 8/10 for T-shirts and dress shirts, I am that flat. The reason I go for boys tops instead of girls top (besides not liking pink) is that the sleeves tend to be longer for the boys sizes and I like long sleeve tops. I could use my kids outgrown polo shirts and outerwear.

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If I was faced with the decision I would choose to go ahead with bilateral, no reconstruction.  I know several people who had one side removed and then a year or two later it appeared in the other side. Even if mine wasn’t an aggressive kind, I’d just remove it for peace of mind.  Also, for me, I think having both removed would simplify my life- as in, I could choose to not wear a bra under my shirt around the house or wherever, and if I wanted to I could wear a bra and two prosthetics.  That info came to me via my mil, who had one removed and then lost the other breast a couple of years later. She said most people thought it was awful when she lost the second one but it made her life easier, dressing wise. 

But I can see where any of your options is a reasonable choice- it’s hard to make those decisions! 

Hugs, Jenny. 

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1 hour ago, Annie G said:

If I was faced with the decision I would choose to go ahead with bilateral, no reconstruction.  I know several people who had one side removed and then a year or two later it appeared in the other side. Even if mine wasn’t an aggressive kind, I’d just remove it for peace of mind.  Also, for me, I think having both removed would simplify my life- as in, I could choose to not wear a bra under my shirt around the house or wherever, and if I wanted to I could wear a bra and two prosthetics.  That info came to me via my mil, who had one removed and then lost the other breast a couple of years later. She said most people thought it was awful when she lost the second one but it made her life easier, dressing wise. 

But I can see where any of your options is a reasonable choice- it’s hard to make those decisions! 

Hugs, Jenny. 

That actually makes a ton of sense. And on the flip side, for someone doing reconstruction, getting the new breast to match the old one would be impossible, if only by feel. But I bet it would be easier to get two matching reconstructed breasts, if that makes sense. So really, with or without reconstruction, it does seem simpler to have the same on both sides. 

This may have steered me to change my answer. Given this line of thought I'd want the double mastectomy with reconstruction, I think. Or be sorely tempted. 

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I'd probably go for bilateral for all the reasons already mentioned.

Reconstruction on the other hand, I'm just not sure about.  I think I probably would get it done if I felt up to the additional surgeries, but if after everything else I was just feeling tired and done with it all, I might go without.    

I'm 50, a B cup since I'm obese, but an A cup if I were to lose a few pounds even if I were to still be overweight.   I go without a bra as often as I can, and in my opinion I can pretty often.  I wear them when teaching or dressing up and that's about it.  I have no qualms about going out shopping or to dinner or just about anything where I'm not in a professional capacity without wearing one.   I never wear one at home.   

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1 minute ago, Ktgrok said:

That actually makes a ton of sense. And on the flip side, for someone doing reconstruction, getting the new breast to match the old one would be impossible, if only by feel. But I bet it would be easier to get two matching reconstructed breasts, if that makes sense. So really, with or without reconstruction, it does seem simpler to have the same on both sides. 

This may have steered me to change my answer. Given this line of thought I'd want the double mastectomy with reconstruction, I think. Or be sorely tempted. 

I'll admit that this weighed into my decision a bit.  I don't think reconstruction of one side would ever match the saggy, post breastfeeding, peri-menopausal breast I have on the other side.

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1 minute ago, Where's Toto? said:

I'd probably go for bilateral for all the reasons already mentioned.

Reconstruction on the other hand, I'm just not sure about.  I think I probably would get it done if I felt up to the additional surgeries, but if after everything else I was just feeling tired and done with it all, I might go without.    

I'm 50, a B cup since I'm obese, but an A cup if I were to lose a few pounds even if I were to still be overweight.   I go without a bra as often as I can, and in my opinion I can pretty often.  I wear them when teaching or dressing up and that's about it.  I have no qualms about going out shopping or to dinner or just about anything where I'm not in a professional capacity without wearing one.   I never wear one at home.   

Yeah, I really think that makes a difference, just in how you picture yourself, you know? I've been at least a C cup my whole adult life, and up to a DD at least, sometimes higher. My mental image of myself includes breasts that are a certain way. They are a large part of my self image, my sexuality, my life. So it would be really weird for me to not have that. Now..if I was 70 years old, whatever. But for me, I think i'd be more comfortable with myself after all the rest of it if my body matched my mental image of myself as much as possible. 

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1 minute ago, Where's Toto? said:

I'll admit that this weighed into my decision a bit.  I don't think reconstruction of one side would ever match the saggy, post breastfeeding, peri-menopausal breast I have on the other side.

Yeah, at that point I might want cosmetic surgery on the other one, to try to match them, lol. Might as well do the mastectomy at that point!

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I'm so sorry you are having to make these kinds of decisions. I have wondered about this a bit--the "what would I do?" question. I like to have some preliminary scenarios in the back of my mind of things like this. I'm pretty large up top, and late 50s. I know I wouldn't do implants, because my system is pretty sensitive. I fear I would react badly to a foreign anything in my body, and would end up having to have it removed. As to the flap surgery--i'd have to talk a good bit to the surgeon to see what they say. I lean toward bilateral no reconstruction, but I'm not sure. Bilateral due to considerations mentioned above. I do not react well to stitches even, so having any more surgical intervention (reconstruction) than necessary doesn't sound appealing. It's such a personal decision about such a personal part of your body. Hugs to you, Jenny.

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I would definitely do double and reconstruction, because so many women on my mother's side of the family had it come back in the other breast later.   I would most likely opt for one of the flap reconstructions, but I don't know enough about them to suggest which kind.  I've also long planned on having a Mommy makeover (tummy tuck and breast lift) when I'm sure I'm done having biological kids, so how extensive the flap surgery would be wouldn't bother me.

In my case I might opt for a hysterectomy too, but both breast and ovarian cancer run in my mom's side of the family, and it isn't BRCA related. 

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It’s hard to be sure, since I was able to get lumpectomy, but I think in your shoes, I would do bilateral mastectomy with reconstruction. My understanding of unilateral reconstruction is that it’s pretty difficult to achieve symmetry if one is reconstructed and one is natural. I think that might displease me enough that I would rather do both. (Although who am I kidding, actually, because lumpectomy and radiation also created asymmetry and I find I can’t seem to care...) 

I think the choice I would be least likely to pick would be unilateral with no reconstruction, because psychologically, I think I would worry inordinately much about people noticing asymmetry (outside my clothes) and viewing myself might bother me a lot. 

Hugs to you, Jenny. I hate this illness. 

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1 minute ago, Quill said:

Hugs to you, Jenny. I hate this illness. 

 

Hugs in your direction, too.

I was telling my husband that I find myself being much more angry about needing to make this decision than I am about having cancer in the first place. I think I feel like cancer is just a quirk. Twelve out of every 100 or so women are going to get it, so I happen to be one of those 12. 

This needing to choose which parts of my body to have hacked off, though? That's something being imposed on me by people. What I want is for some competent authority to provide me with relevant and meaningful information that makes the "right" decision clear to me. Instead, I get all of these professionals telling me it's up to me. 

And I know why that is. I know it's because there are far too many variables and that there is no one "right" decision. And, ultimately, I'm the one who has to live with my choice. And if anyone actually swayed my decision and I ended up unhappy, it would then be that person's "fault."

So, yeah, I get it. 

But it still feels ridiculous and unfair that I have to make these choices.

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2 minutes ago, Jenny in Florida said:

But it still feels ridiculous and unfair that I have to make these choices.

I hear ya. 

Someone I am close to had a bad reaction with reconstruction and that was firmly in the back of my mind if they were going to recommend bilateral mastectomy for me. Yet I don’t know if I could go bilateral with no reconstruction, from a psychological standpoint. 

I don’t know...you’re right; it just stinks to try and make these decisions. 

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I am almost positive I would do both because of my need for symmetry. Just the thought of one gone on ME freaks me out.  Not on anyone else though.  I just know how I am about things......I am really torn about the reconstruction.  I honestly think my husband’s feelings would weigh heavily in to that part of the decision. 

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2 hours ago, Scarlett said:

I am almost positive I would do both because of my need for symmetry. Just the thought of one gone on ME freaks me out.  Not on anyone else though.  I just know how I am about things......I am really torn about the reconstruction.  I honestly think my husband’s feelings would weigh heavily in to that part of the decision. 

 

Yes, as a DD, I don't see big DD breast on one side and nothing on the other.  And everyone that looks at me for the rest of my life notices and asks questions. I'd rather deal with the questions all at once from the people who knew me big-breasted and then it becomes the New Me.

 

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1 hour ago, vonfirmath said:

 

Yes, as a DD, I don't see big DD breast on one side and nothing on the other.  And everyone that looks at me for the rest of my life notices and asks questions. I'd rather deal with the questions all at once from the people who knew me big-breasted and then it becomes the New Me.

 

I also think there would be issues with muscle imbalance eventually, with a heavy beast on one side and no breast on the other. Like carrying a purse on one shoulder all the time or whatever. 

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5 minutes ago, Ktgrok said:

I also think there would be issues with muscle imbalance eventually, with a heavy beast on one side and no breast on the other. Like carrying a purse on one shoulder all the time or whatever. 

 

My spinal cord has a slight curvature in 6th grade (11 years old)  well child checkup that got me a referral for scoliosis. My parents were told to get me backpacks for school and that I should only use crossbody or messenger bags for lightweight stuff. 

My left is my dominant side and my left shoulder is noticeably higher than my right, not significant but noticeable. 

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Hugs, Jenny.

I had bc in 2006 at age 41. I opted for the bilateral because my cancer type (lobular) is considered “sneaky.” I also think that a unilateral would have left me feeling unbalanced.

I had reconstruction (tissue expanders plus saline implants). I was pleased with my recon results. I can easily wear tank tops, bathing suits, and camisoles. I did not have nipple reconstruction done since my motivation was to look nice in my clothes. 

I have no regrets with regard to my treatment choices. Of course, there is no right answer here.

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On 9/13/2019 at 9:19 PM, vonfirmath said:

 

Yes, as a DD, I don't see big DD breast on one side and nothing on the other.  And everyone that looks at me for the rest of my life notices and asks questions. I'd rather deal with the questions all at once from the people who knew me big-breasted and then it becomes the New Me.

 

 

If one opts for unilateral,  one may opt to wear a prosthetic.  The prosthesis quality choice include those that are as good as it is for acting, i.e. natural, and its weighted so that one does not get the back or shoulder strain.  At most, the new bra will be different than the old bra -- that may be a blessing for some people as they may not have realized they needed more support.  In my state, its the law that the prosthesis is covered by insurance...and if its obtained the same year as all the medical is done, likely it will be zero oop.

Keep in mind that a reduction is also an option for the contralateral breast.   

Also know that the lymph node removal will affect appearance if any of those on the chest, say under the collarbone, need removed.  The surgeon may not know the extent until in the OR.

One needs to interview plastic surgeons to determine possibilities for one's unique situation.

Those looking down your blouse will deserve what they get if they choose to comment on what they observe.

Also know that if the patient is overweight, chances of recurrence are greater...one should plan on losing weight later, after recovery, if one isn't in the healthy weight zone.

Edited by HeighHo
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I voted unilateral no reconstruction, but after thinking about it for a few days I think I'd do bilateral no reconstruction, because I hate bras and it seems like if I'm going to lose a breast I might as well not have to wear bras anymore.  I'm not tiny.

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I had bc in 2009 at age 35. I am BRCA1+, so double mastectomy was the only option. I had expanders, saline implants, no tattoos. 

Pros of reconstruction: I do not have to wear a bra - the implants are enough to "hold".  I don't have to fuss with purchasing (or making) anything extra - I just get dressed. I don't know if this is normal, but my implants kind of serve as my own personal AC - my breasts are always cool. It was way better for my mental health to have breasts, even if they are fakes, when I was 35 and also going through menopause. 

Cons of reconstruction: I am obese, and my implants were by law only allowed to be so big - so I am a size 18 with only a B cup - it can be hard to find shirts that fit me since most women my weight have large breasts. I have very little sensation in my breasts - like you could jab me with a pin and I might not notice; I don't know if that would've happened if I were flat though. My plastic surgeon warned me that I would have better visual results with silicone implants, but I chose saline since silicone can cause bumps if they burst. He was right: my breasts don't look good nude. I had some real mental health problems with the filling of the expanders every couple of weeks - I think this was a delayed PTSD response to the original surgery. It was hard to get through, and I had to go back so many times. 

This is a BRCA+ site, but it has all sorts of info on mastectomies: https://www.facingourrisk.org/understanding-brca-and-hboc/post-mastectomy-photo-gallery.php

Edited by beckyjo
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Goshh. I really don't know. I think I would want to know more about the tumors, how aggressive they were, hormone receptors, etc. I may very well do both for a peace of mind....but I'm a single Mom to four kids, and I'm doing everything I can to stick around for them as there really is no safety net for them.

ETA: Just saw your other post.  Honestly, I'd ask on the breastcancer.org forums. So many women there with lots of experience. 

 

As to reconstruction, I honestly don't know.  My best friends Mom had the DIEP flap maybe five years ago and has been very happy with it. 

 

Sending prayers for guidance to you.  Tough decision. I'm sorry. 

 

 

Edited by umsami

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I was reading about nipple sparing mastectomies the other night, which I didn't know were even a thing. They are not always a possibility, depending on size/location of the tumor(s), but they do not increase risk of cancer reassurance, and may even retain some sensation. 

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I truly don't know what I would do.  At the moment, I would not choose reconstructive surgery.  I may go ahead with the double not so much for appearance, but because of lopsided weight on my frame.   I'm on the larger side so I would think the more weight and pull on one side of my spine would or could cause some back issues.  It would be something I consider when choosing a unilateral or bilateral surgery.

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Just my story.   About 18 months ago I had a bilateral with the DIEP reconstruction.   Mine was due to family history and genetics (not BRCA but another gene, ATM).   

 The DIEP was much, much harder than I thought it would be, but now on the other side, I would still do it again.  The initial surgery was around 9 hours and I have had one small revision.  I was 'less than' an A before, a B now.   I have never wanted implants, they are just not for me, and without the DIEP option I would have chosen no reconstruction and to 'go flat'.   I would never recommend a DIEP for anyone without a good support system in place.   

My mother underwent a unilateral mastectomy decades ago and chose no reconstruction.   My best guess is she was a DD.   Seeing her being totally comfortable in her own body, one side flat one side most definitely not, obviously impacted me greatly to know that I would be ok, no matter my choice.   

 

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Ok, I just googled the DIEP flap procedure and I'd do that, for both breasts, if it could be combined with the nipple sparing technique for the healthy breast. I'd want to keep one nipple with sensation if possible. 

But a way to finally fix the apron of fat I've had since my first c-section, plus new breasts and no implant to pop seems pretty much the way I'd want to go. 

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