Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Weighing my options

Comments

  • moderators
    moderators Posts: 7,683

    Welcome, @sedonadreaming! We're so sorry you find yourself here grappling with this significant decision. You are most definitely not alone! This is a decision that many, many of our members have been faced with, and just as your doctor said, there are no wrong answers. The only right answer is the one that you can live with, comfortably and happily. Because that is the goal! It's crucial take into consideration the impact of the different procedures on overall outcomes and recurrence risk, but it is by and large a very personal decision.

    We recommend reading through some of the many threads in the Surgery forum that have posts from others who were/are in your position (you can search the forums using keywords like lumpectomy vs mastectomy, surgery decision, or surgery choice to pull up specific threads and posts). But ultimately, the only person who has to live with it is you. You've come to the right place to talk through it with support, whatever you decide.

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 117

    Hi @sedonadreaming. Beautiful name by the way. I think most of us do agonize over how to make these decisions. I’m sorry for your diagnosis. It’s not easy to hear that you have cancer, then while you are in a state of shock, with everything feeling surreal, having to make such an important decision!!

    I know I had never carefully contemplated what I would do if I got breast cancer. I had previously thought I wasn’t that attached to my breasts and of course I’d just have them removed if I ever got cancer. Isn’t that what we all say? I’ve learned it’s much easier to say that when you don’t have cancer. All of a sudden, it’s not a simple decision.

    And you know more than most, with your job … you are aware of things that can and do go wrong. That probably makes this a lot harder! Ignorance helped me make my decisions, I must admit.

    For whatever it’s worth, I will say, I miss my own natural breast (even though it wasn’t very pretty). I miss having sensation. The total absence of sensation is so weird. I still have one natural breast which in a way is a comfort to still feel half familiar and at least have feeling on one side. Yet I see the potential with my new reconstructed (not quite finished yet) breast. But I’d go back to having my old breast back in a heartbeat if I could, without cancer. Nothing is like our original body parts!! That being said, having cancer is no joke, and if my remaining breast ever shows any signs of cancer, it will probably go too. It’s sobering to think of the potential for recurrence.

    I’m sorry you are needing to be here but I’m glad you came here!! I don’t know how you feel about speaking to others who have gone through breast cancer, to hear what they think of what they chose, but that might help. My surgeon was able to connect me with a local support person who had a similar situation to mine and she was great! There is also an online support group here that is pretty wonderful. I hope you can sort through your feelings about your options and gain clarity!!!

  • pinkrules
    pinkrules Member Posts: 91

    Hi, I'm so sorry your mind is racing like it is. Maybe wait until your MRI and genetic tests come back and then go forward with decisions? I know it's harder than said though. My first thought was to remove my breast but results came back that it was not necessary. I had a lumpectomy and radiation. Both were a breeze for me thankfully. The radiation did not make my breasts look lopsided and the sunburn was minor. I wish you well and please keep us updated on what you decide!

  • gardengurl
    gardengurl Member Posts: 23

    Hi there, I’m sorry that you are going through this. These decisions are agonizing. I had a very similar diagnosis 3/21 . My tumor was grade 1 ++- 1.1cm and at 6 o’clock. I wanted a dmx because it because of extremely dense breasts. Nothing showed up on mammo or us. I requested mri, and had to go through 2 biopsies. I wanted to be done. Breast surgeon told me mastectomy wasn’t necessary and was not best choice., even though I told him I had scanxiety . I didn’t want to delay getting the cancer out since it took 4 1/2 mos to dx.
    So I did lumpectomy followed by partial rads with boosts. Wasn’t happy with the asymmetry it left, not to mention the hardness. In October, I had a bilateral lift and reduction in right healthy breast to balance thing out. LCIS was found in healthy breast. They do not do a mastectomy for LCIS, but in retrospect I definitely wished I listened to my inner voice. Good luck to you.

  • kaynotrealname
    kaynotrealname Member Posts: 346

    I think all of any of us can do is tell you what we did and why. I had what they thought was a 1.8 mm tumor with no lymph node involvement or LVI. The total area of concern though was 3.6 mm but the thought at the time it was DCIS. Anyway my surgeon assumed I'd want a lumpectomy and as she was surveying my very large breast thinking I'd still have plenty left when done I corrected her quite definitively that I wanted a double mastectomy. Why? I had watched my mom die of ovarian and had already gone through some gene testing. I knew that if any genes came back for me, I'd get a double mastectomy with a DIEP so when I was actually diagnosed I saw no reason to stray from my plan. The reasoning behind it was to 1. avoid radiation since I knew if my lymph nodes were clear and I had a double mastectomy I could do that 2. I'd never had to get another routine mammogram again and I LOATHED scans 3. my chances of having a local recurrence at least was reduced even as my chances of having a distant recurrence was not. But any chance of a cancer reduction I was going to take. And lastly, although this didn't factor hugely in my decision but it certainly factored in how I felt after surgery, I didn't like my natural breasts. They were ridiculously large for my small frame, incredibly dense, and very hard to monitor appropriately as a result, and in my opinion aesthetically ugly. I had researched pictures of DIEPS and knew they could be pretty damn good so I was willing to take my chances that they could create me something that I liked a good sight better than what I had. And they did! Pathology showed by the way that my cancerous breast and even my non-cancerous breast had benign conditions that were associated with an increased risk of cancer, the lump was 3.2mm and not 1.8m so I was glad they were gone when the results came back and the results of my DIEP gave me new boobs I liked way better than my originals. Granted, they aren't perfect but they're good enough that I didn't go through the second part of the reconstruction surgery. I did a little bit of surface work in the office, slapped on some nipple tattoos and have gone on with my life. Also, for whatever reason, they're not particularly numb. I've got some numb places I think but the feeling is strong enough so that they feel like what I had before. Abdomen is more numb but that's coming back, too. The scars aren't great because scars take forever to go away with me but in clothes and even a bathing suit my profile is freaking fantastic. Better than before that's for sure. So it doesn't have to be awful when all surgeries are done. Sometimes it can even be pretty awesome.

  • bennybear
    bennybear Member Posts: 245

    I had a similar initial, diagnosis after which I had a lumpectomy and rads. The rads left me with serious fatigue, for much longer than I expected. One consideration is which side, as left sided rads is near the heart. In my case 8 years later I needed a mastectomy, and another 5 years another mastectomy.
    One other thing to keep in mind that implants are not usually an option after radiation.
    wishing you luck in making the best decision for you! There is no right or wrong choice.

  • nns121317
    nns121317 Member Posts: 102

    Like others have said, there is no wrong choice. I was 42 at diagnosis with a 2.1cm tumor. My surgeon initially suggested lumpectomy, but given family history, I only felt comfortable with mastectomy, which became BMX because I didn't want to have one real and one fake breast. My initial surgery was during COVID, so if I wanted to keep my skin the only options were expanders or implants (no immediate DIEP/flap). So I got implants, as they weren't expecting radiation in my future. But then I came back with positive nodes, plus DCIS in my "healthy" breast, so did chemo and radiation, then fat grafting to make the radiated breast more symmetrical, and now I'm having DIEP next month because my implants look fantastic but are terribly uncomfortable. I thought I would be happy with larger, Playboy-worthy breasts (not what I had naturally), and I've come to realize that isn't the case.

    All this to say - this is an awful decision that no one should have to make, and the information we have at the start doesn't always correspond with how things turn out. What has made a difference to me is finding providers who are willing to listen and be honest about the benefits and risks of the available options, because then even when my choices don't work out the way I had hoped or planned, I don't dwell on the past coulda/woulda/shoulda and have fantastic resources by my side who want to help make my current situation better.

  • salamandra
    salamandra Member Posts: 723
    edited January 12

    When my surgeon told me that she recommended a lumpectomy, I felt pure relief. Both times. Now that I have now had cancer on both sides, I am sometimes questioning intellectually whether I should go with mastectomy (it's still an option to go back and do it later), but I'm clear that emotionally I knew what I wanted, and I don't actually feel any regret for not doing a bmx the first time even though it would have prevented this new primary.

    Not only are the long term impacts impossible to predict (there are side effects of radiation yes, but also of mastectomy, and also of reconstruction; and also sometimes a person gets a mastectomy and still needs radiation, etc., etc.). But it is really really hard for humans to accurately predict how we'll feel in the future. The ambivalence you are feeling may well be a sign that either decision could work fine for you in the long run, and the important thing is to give you mind/heart/body space to figure what feels right, to you, right now.

  • lillyishere
    lillyishere Member Posts: 769

    Facing a breast cancer diagnosis is a deeply personal journey, and each individual's experience is unique. Most breast cancers, as far as we know, do not have a genetic basis, with around 15% of cases testing positive on genetic tests. In my own case, an MRI detected a small cancer and node-negative. The moment of diagnosis was terrifying, leading to a newfound resentment toward the very source of the cancer – my own breast.

    Despite receiving two different opinions from reputable cancer centers, both recommending lumpectomy and radiation, I opted for a bilateral mastectomy (BMX) to remove both breasts. This decision, though difficult, proved to be the right one for me. The pathology report revealed cancer in both breasts and 2 lymph nodes, reinforcing my choice.

    It's crucial to recognize the limitations of MRI, which may vary based on breast density and the size of the cancer. No screening method is flawless. In my experience, I haven't encountered anyone who regretted opting for a BMX. However, I have met women who initially chose lumpectomy and radiation but later opted for a mastectomy.

    I encourage you to seek a second opinion and contemplating the comfort level with regular MRIs and mammograms, especially if considering lumpectomy. Your decision is personal, and I wish you the best of luck. Feel free to share the decision you make – we're here to support each other.