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Having mastectomy and can't decide what option to choose

Gudo25
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I am new here. On tge last Thursday, 9th January 2025, I was diagnosed with high grade DCIS in left breast. Mastectomy is the only option presented to me. It is very overwhelming I am trying to be positive but this week on Friday, at work, I had a panic attack. I am not sleeping well. I wake up around 3am every day. I feel quite tearful but wanting to be strong and haven't cried yet. 

I am so confused about whether to have reconstruction or not? I am worried about the length of surgery time as it increases with different options of reconstruction. I am also worried about the chance of infections and healing time depending on the reconstruction option. Due to this fear I am leaning towards no reconstruction but I am not 100% sure I'd like the way it feels/looks. 

Any experiences/advice would be welcome. 

Thank you.

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    Hi, Sorry to hear you’re going through this. It’s a big decision and I’m guessing you don’t have much time to decide so it’s very stressful too. 

    I was diagnosed with DCIS on Christmas Eve but as they are still doing further tests, I don’t know my treatment plan yet other than it will be an op and I may need reconstruction. Because of the not knowing and waiting, I’ve been reading up on it all and have just found a table on the macmillan website about the types of reconstruction. It’s not letting me post a link.

    Hopefuliy, someone else will reply who has already been through this. 
    Take care of yourself

  • Offline in reply to N1ck

    Thank you N1ck. I literally just received an appointment letter via email, for Wednesday 22nd Jan, for a consultation with Plastic team. I hope that they are not requiring me to take decisions on what type reconstruction I would like. As I said earlier I don't even know if I want the reconstruction yet. I am very worried about the healing time and possible complications with each of the options. I know complications can happen with any surgery so it's not a very rational fear.

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    Hi, 

    I have inflammatory breast cancer and I am going through a similar thing in my head, the only option presented is full mastectomy of my right breast, I am struggling to comprehend that there is no scanner to ascertain healthy and unhealthy cells and skin margins, and the only way is to remove the breast then look at it under a microscope to see if treatment has been successful in terms of chemo and radiation, this seems counter intuitive to me and I wanted to avoid surgery at all costs. 

    What I am going to do is speak to my oncology team to find out options if I decide not to have a mastectomy and weigh up in my head the risks etc but also I plan to look at photos of mastectomy and reconstruction, think about the risks, and also see if I can do a meet and greet with previous patients to see their mastectomies and reconstructions.  For me personally, if I opt for mastectomy I have ruled out reconstruction from the stomach as I don't want a big scar across my stomach and I think it is too risky, which would leave the option of reconstruction from my thigh (my preferred option) as people less likely to see my inner thigh or from my buttocks. 

    If I go for surgery despite the complications risks and hassle of reconstruction I think I would opt for reconstruction as without breasts if I opt for mastectomy I wouldn't feel like a woman and it would rob me of sexual identity, and also I do not want just a flat scar, but I am 44 but still very youthful and I have always had big breasts 40D that I have always liked, however, if I was a lot older or a smaller cup size a or b then I personally wouldn't bother with reconstruction.  So my advice would be to look at photos of mastectomies, speak to people that have had it, try to visualise it if you can to try and cope prior to the surgery so it is not a shock, speak to your surgical team and ask lots of questions that you may have, and then seek out people/opportunities to talk to people that have had mastectomies and reconstructions, look at photos, and then weigh up pros/cons, risks but also think about psychologically what might be best for you.

    In terms of being strong it can be a roller coaster of emotions so my advice is if you feel like crying have a cry, if you need to talk to someone talk to someone, etc.

  • Offline in reply to Gudo25

    Good luck for your appointment. I read that the DIEP flat from the stomach is the gold standard. I’ve got a B cup and 3cm DCIS and another area being investigated so I’m hoping that can do a lumpectomy but if it’s reconstruction, I’d also consider an implant. Let us know what they say. 

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    Hi Gudo,

    A very warm welcome to our forum.

    Having read your post, I thought that you might find it helpful to hear from someone, who has had a double mastectomy and remained flat. I have had 2 bouts of breast cancer within a year of each other. First time I had a lumpectomy, then I had a double mastectomy for the second bout. Unfortunately, I was not a suitable candidate for reconstruction, due to previous, non cancer related surgery. My lumpectomy left me with a messy looking breast. I changed surgeon for the second procedure and my surgeon did his best to improve the appearance, when he did my mastectomies. I manage fairly well with an assortment of prostheses for different activities. It has now been 15 years since I had my last operation and I feel happy with the outcome.

    It does take a little time to get used to being flat. I was formerly a size 44D and I found that the first silicone prostheses were very heavy, but these have become lighter and lighter over the years. I have now found a lovely lightweight foam breast form in M&S, which is more comfortable for everyday wear. It doesn't give as good a shape as the silicone one, which I still wear when I am dressed up. I did have a few embarrassing incidents, when I first went back to swimming. The swimsuits that are filled with polystyrene beads, floated in the water and came up to my neck when swimming. Some of the silicone ones were so heavy that they pulled my breasts down to my waist. Other materials absorbed so much water, that I was dripping all over the place, when I got out of the water. This meant that I needed to squeeze the water out of my breasts, before I came out of the water - trying to do this surreptitiously was never easy! I'm pleased to say that I've now found better solutions.

    I do find that I sometimes have to use a modesty panel at the front of certain clothes, as I can no longer wear a low  "V" neck garment, without showing some of the post-surgical scarring. I am now 75 years of age and find that I often go flat these days. I tend to mask this somewhat by wearing a chunky necklace and layering my clothing, which combats the totally flat appearance. One advantage that has come from the surgery is that I can wear any size of prostheses now. One disadvantage is that I can no longer have a mammogram to check for recurrence, but I can overcome that with other scans.

    The two most common donor sites for reconstruction tend to be from the abdomen and the back, but they do involve lengthier operations.

    If you have any further questions, I am happy to answer them.

    Please keep in touch and let us know what you decide to do. We are always here for you.

    I hope that all goes well with the plastics team tomorrow. You will find it helpful to draw up a list of any questions you may have before your consultation. Bring this with you, to ensure that you don't forget anything important.

    Kind regards,

    Jolamine xx

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