Boob gone at 42? Mastectomy needed for DCIS

krissy, there are some women who upon hearing the word "cancer", immediately know that they want to have a mastectomy or a bilateral mastectomy.  This is true even of some who have 'just DCIS'.

And then there are those of us who, although happy to know that our cancer was caught early, are totally shocked to hear that we need to have a mastectomy.  I know exactly how you are feeling.  I was there. I was a bit older than you at the time - 49 - but I had pretty much the exact same thoughts.

What got me off the ledge was a discussion with a friend of a friend, someone who'd had a mastectomy about 7 years earlier, when she was in her late 30s. She was fine.  She'd had TRAM reconstruction (they weren't doing DIEP at the time) and she loved her reconstructed breast.  She was off living a normal life, with breast cancer not playing any role in her life.  Requiring a MX is crap if it's not what you want, and it will change some elements of your life, but it won't change your life. I'm now 7 years out, and that's what I've found too. Most of the people in my life today have no idea that I had breast cancer, and very few know that I had a MX.  There are different types of reconstruction, including some that can provide very natural looking and feeling breasts.  I decided to go with implant reconstruction, which is not as natural in feeling or appearance, but in clothes you would never know the difference.  I'm small breasted so I decided to go just a little bit larger, and had an implant added to on my natural side; I actually look better now (in clothes) than I ever did before. My breasts are finally proportional to my body.  That's the lemonade I made from the lemon.

Having a better figure doesn't make up for the loss of my natural breast.  That is still crap. But it happened, I made the best of it, and I moved on.  You will be okay.  You will get over this initial shock.  You will figure out your way to deal with this. That doesn't mean that you won't have any problems or any bad days, but it means that overall, it's not going to have the OMG impact that you fear.  I remember the shock and my own OMG thoughts. When I think about it now, I still shake my head and think "really, I had a mastectomy??"  But honestly, it's okay.

((((Hugs))))

krissy I was 43 when I was diagnosed, I was not expecting what was about to happen. A MX was not on my to-do list And I so did not want to here how lucky I was the cancer was caught early. Don't get me wrong I do feel fortunate that I didn't ned radiation or chemo, but I didn't want to lose my breast.

You will get used to the new you, the new aspects of your life. It will get better, it's just going to take time. Hang in there take it one day at a time.

This resonates with me. I am 49 and went in for a regular mammogram. They could see nothing on the mammo but the nurse felt a lump. Biopsy said it was benign. But a great surgeon said let's do an MRI - found another spot but also tested benign. But the same great surgeon said "you know I think we have to take this out." And thank God he did. It came back as DCIS stage 0.

I had four surgeries in four weeks, the first one I already told you about, the second one they took a little bit more around the cancerous area, the third one they took even more around the cancerous area and by the time we got to the fourth one I had no choice and had to have a mastectomy on right side as it was all over. I am 'cancer free' now and grateful.

But I'm also boob free and recovering from four surgeries. Glad they caught it early, yes. Glad I had to have a mastectomy, no way!

I also don't like it when people say, "wow you're so lucky." Don't feel lucky. Family and friends mean well, but unless you go through this I just don't think most get it.

Still hurting at 3 weeks post. Not real sure how much to do and not do to recover. Find I'm almost ashamed because I'm still in so much pain and my fatigue is still strong (Should say here, that I do have chronic fatigue syndrome which is probably contributing). But I work full time, am active and have a full life.

Perhaps I just needed to talk (type) to people I thought might understand.

Thanks for reading. Love the feedback about everything. Meeting with a geneticist and a plastic surgeon in about a week.

Shawna, age 49 and rockin' the prothesis camisole and knitted boob my friend made me (very lightweight)

Krissy, just checking in to see how you are doing.

farley, like Krissy (and me and many others) do you also have a large area of DCIS that requires the mastectomy?  And what drove you to the decision to have a bilateral mastectomy?  As someone who really didn't want to have a MX in the first place (yes, it does suck), when I had an MRI that showed my other breast to be completely clear, I was relieved that I could feel comfortable making the decision to have a single MX only. I think for women who choose to have a MX when they could have a lumpectomy, it's easier to choose to have a BMX, but I've noticed that those of us who are forced into a MX when it's really not what we want tend more often to stick with a single MX.  The way I looked at it, if I didn't want one MX, I wasn't going to volunteer for two!  But of course it all depends on what's going on with the other breast and other risk factors one might have.

Krissy, your question is unfortunately an impossible one to really answer because no one has ever had both single MX surgery and bilateral MX surgery. So we can each only share our own experience and speculate what it might have been like to have the other surgery. Having had a single MX, I can tell you that I found the recovery to be pretty easy - but then I had implant reconstruction, which is quite different than a DIEP.  From what I've read on this board, my guess is that a bilateral, whatever the type of reconstruction, is considerably more difficult than a single. While I found it difficult to get in and out of bed, I did have one good arm and one side that I could lie on and put pressure on to move around.  So at least I was able to get into and out of bed - I know that a lot of women who have bilaterals end up sleeping in a recliner.  And I had one good arm to dress myself, do the cooking and the day-to-day chores, etc..  With a single MX and with implant reconstruction, I had to be careful about my movements but I was pretty much up and around and able to do most things (except driving) right from the start. I didn't need any assistance at all from the time I left the hospital, less than 24 hours after my surgery. I don't know that I would have been able to do all that if I'd had a bilateral, or even if I'd had a single with DIEP.  

Personally, since I had an easy time with the single MX, if I found that I needed to have a MX again, I'd have no fear of the surgery or the recovery. I still wouldn't want to have another MX, but it wouldn't scare me and I wouldn't be thinking "I should have done them both together so that I wouldn't have to go through this horrible experience again". On the other hand, I've read many times on this board comments from women who've had BMXs who advise other women to do both sides at once because it's so difficult that you only want to go through it one time.  I always wonder if that comment is based on the fact that they did do both sides at once and that's what made the experience so difficult.  On the other hand, everyone's experience is different, so even though I found a single MX to be pretty easy, I know that others do have a much harder time with it.  And no doubt there are some women who will say that they didn't have much difficulty with a BMX.  Until you go through it, there's no way to know what your experience will be like.

You might want to post in the Reconstruction Forum, asking about recovery experiences for those who've had a single DIEP vs. those who've had a bilateral DIEP.

If you are considering a DIEP, something to consider is that this is a surgery that can only be done once.  So if you have a single MX with DIEP reconstruction and at some point in the future decide to remove your remaining breast, you won't be able to have a second DIEP.  I didn't have enough tummy fat for a DIEP but even if a DIEP had been possible for me, since I was planning to have a single MX, I would not have had a DIEP for that reason. With implant reconstruction, or with an I-GAP or S-GAP, you can have a single MX and then have the same type of reconstruction later on the other side, should it be necessary. 

If a DIEP is your preferred type of reconstruction, and considering your LCIS diagnosis, those both could be reasons that push you towards having a BMX.  I'd had 3 previous biopsies (include 2 fibroadenomas) of my 'good' breast in the years before I was diagnosed.  And then, at the time I was diagnosed, I needed yet another biopsy of that breast, this time for suspicious calcifications. The biopsy result was benign with no signs of any high risk conditions.  If the result had been something like ADH or LCIS, I think I might have opted for the bilateral, even though I really didn't want it.  It was the fact that I had the benign biopsy and the clear MRI that made me comfortable with my decision to have the UMX.  It's a tough decision!

Just found out today! I'm 41 and have DCIS. Dr. recommend a mastectomy ( not sure what kind yet) because they are all over the place in breast! Not spread to lymph nodes just more the one;( have to make appt to see surgeon to decide. My dr. said not to leave it. I am also sad, mad, scared!! I thought I had the BEST kind of cancer!! I know that remove the breast and remove the cancer but you can get cancer anywhere;( I feel more scared now that life can be gone in the blink of an eye!

I was diagnosed in 2009 with DCIS and underwent surgery to remove the small area of cancer cells. No further treatment given which did concern me as I always expected it to return if not treated but nurse said it was too small to test.

I had follow up mammogram one year later, July 2010 and in the same breast was more cancer cells but thankfully still very small. I made the decision to have a mastectomy and reconstruction all in one and this was done in September 2010. Results showed cancer had gone but diagnosis was high grade and Her2+ so I went through 6 months chemo and one year herceptin.

Just been for my 3rd mammogram check and all is looking good. I decided not to have both breasts taken off as the Dr advised against it as the return of cancer was only 6% higher than another woman who has not had BC. I have to agree the waiting for results is the worse thing to go through. I am 3 years on and feel good about myself once more but can I ask if a reoccurrence is more likely if the cancer was a high grade?

Thanks everyone, love this discussion board.

Thank you for your reply Beesie.



I meant to say that the cancer was a small tumour second time round, still in the same breast but Dr could not confirm if it had been missed first time round or if it had returned. It was 8mm (about the size of the tip of a little finger) so what you say about my treatment makes sense to me. Some nodes were removed but thankfully all clear. I am 55 and taking tamoxifen.