Stage 0 DCIS Double Mastectomy

I am going in for surgery in March for a double mastectomy (one by choice). I will have the tissue expanders and then proceed in time with the reconstruction to have the implants put in.

How bad is this whole procedure? I am so nervous about the pain afterwards. I have two small kids and its killing me that i will not be able to do anything. How long did it take to start feeling up to getting out of the house and to actually put the implant in. I do not require chemo or Radiation

13 Replies

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  • Hi Jade. I also had a double mastectomy removing one healthy breast. It was three years ago but from what I remember I was given pain medication that was very effective. I took it faithfully as prescribed and there was very little pain. There was a little discomfort and some swelling. I found ice packs to be the most helpful. I actually bought bags of frozen peas because they contoured to my body better than ice. It takes a while before you get your strength back in your arms but they will give you exercises to do which will help. You will not be able to lift for about six weeks. If you have small children that need to be lifted then you are going to need some help. There is no pain involved with the fills of your expanders. However as your skin stretches there may be a little discomfort. Your doctor can prescribe medication for that if you feel you need it. You will have another surgery to replace the expanders with your implants. Timing depends on how big you want to be and how long it takes to fill. There is some swelling after this surgery and a bit of discomfort. Again you will have medication to help with this and again I've packs are wonderful in bringing some relief. This surgery takes less time to recover from but with small children you will still need some help. I hope this all helps. I know it's frightening because you ate going into the unknown. My beset advice is to take medication prescribed. Don't wait to see if you have pain or not. It's tajes it every four hours or every six depending on what it says cot do. Also get some tops which button down the front and extra pillows to prop yourself up in bed. This will really help. Good luck to you. Denise Z

  • Thank you so much for this! Your message was comforting and has eased my mind a little. :)

  • Hi Jade. I had a bi-lateral mastectomy in my 30's. Although there was some initial pain right after surgery, it dissipated within a couple of days. Like Denise said, taking the pain medication made a huge difference and I only had to take it for 2-3 days. Drains are usually placed during the surgery that stay in place for a week or two depending on how quickly fluid drains. These can be a bit uncomfortable and not nice to look at. You will need some help if you have young kids that need to be lifted or carried. Initially it is not recommended that you raise your arms above your head so reaching for anything or drying your hair is out. Bathing and even using the bathroom can be a challenge and you may require some assistance.

    It's been a number of years since I've had the surgery (17) but if I recall correctly, I was swimming in the ocean two weeks after. At least that's what I've been telling people and I'm sticking to it.

    Good Luck!

  • Thank you! I just want to get this surgery over with. I am 33 and found out last week and now in two weeks i am having the surgery.

  • Hello,

    I road my bicycle 2 weeks later. Had the operation on a Wednesday, back to work 1 week later. I only took the pain medication for a few days afterwards when I was recovery at home. Gradually moving to Tylenol. A bit discomfort towards the end as the skin is expanded to the max, but that only last a few days until the skin adjusts.

    Don't lift heavy objects after surgery.

  • From a Share Helpline Volunteer

    Hi Jade,

    I too was very scared before the surgery​. And I found that the surgery and recovery is nowhere near as bad as I had thought. In fact, since then, I've talked with dozens of women who've had mastectomies, and visited about 7 in the hospital the day after. They were all sitting up, smiling, chatting, and in no pain. All said the same thing I did - nowhere near as bad as I'd been expecting. For me, the only time it hurt was for 2 minutes within the first 2 hours after I woke up after surgery, I pressed the pain pump, and was fine again. Spent that night in the hospital and went home early the next afternoon. That first 24 hours at home, I took the pain pills max dose every 4 hours around the clock, then started to wean off them. By 3 days at home, I was totally off them, taking just Extra Strength Tylenol. The first night at home, it was nice to have someone cater to me as I just rested in the recliner and dozed off and on. By the next afternoon, I sent my sister and brother-in-law, who had come to 'take care of me' back home - I didn't need them as I could do everything for myself. I started walking longer and longer distances, was driving at 4 days out (as soon as I was off the narcotics), and went on a job interview dressed in a suit (yes with drains still in) at 2 weeks. By 4 weeks I was back to jogging on the treadmill as usual. All that said, I didn't have little ones at home. Based on how I felt those first few weeks after, I would think I would want help full-time at home with the little ones for the first week if I could​, definitely for the first 2 days at home, maybe just for a few hours a day the other days that first week if that was all I could get. Then I think I'd have been able to watch them by myself fulltime. No pain with it (excepting I assume if I didn't take those pain pills the first few days it would've hurt)...and it was very sore after I got off the pain pills every time I had to do those arm stretching exercises they made me do, but I learned to take tylenol 20 min before and that helped. The biggest problem I would think with little ones would be the weight restriction - that you can't be lifting more than X amount of pounds for like 4 weeks. So you need to find other ways to take care of the kids that don't involve picking them up - like changing diapers on a changing pad on the floor, having them crawl into your lap instead of you picking them up, etc. I've visited several young moms who've had mastectomies during the first two weeks after their surgery, and they made it work and were watching their young toddlers fulltime by themselves. Consider asking for a peer match to someone who had a mastectomy and had young kids at home - would help ease your mind to talk with them

  • Wow thank you so much for this information. You have given me hope and relaxed me. I have not stopped thinking about how I am going to feel or do things. I am spending my weekend getting my house in order and making sure things aren't so high up for me to reach and that all the kids stuff is accessible. Thank you again

  • I too had a double mastectomy, once in 1990, with reconstruction 5 years after. I just wan''t ready for immediate reconstruction. When I had reconstruction was surprised by the lack of pain. I was able to use Adviil and other OTC products. I was absolutely floored when I had to have my second mastectomy in 2012, but with immediate reconstruction, The pain was a little bit more intense but I managed with Advil and other over the counter medications. I also remember the exercises that I had to do, and I found them to be quite helpful i recovery.

  • I had a double mastectomy, one by choice and then had immediate reconstruction. I chose the gummy bear implants. That has not been bad and I'm very pleased with the results. I just didn't want to do the expanders as I didn't want to keep going back in for fills. A friend of mine did the expanders and said if she had it to do over with she would have gone with immediate reconstruction. Bless your heart no matter what Way you go I'm four days out of my first Chemo and just starting to feel like I have the flu

  • Hi Jade - I had the same diagnosis. DCIS left breast. I had a double mastectomy nipple/skin sparing May 2016 with expanders and exchange to implants September 2016. My procedure was done over the muscle, a newer technique. I'm 58 and in pretty good shape to begin with and no little ones at home. That being said I know you will need some extra help if you can. The dmx was painful, but manageable. I assume you will have drains. Those are a pain and uncomfortable. There's no way to sugar coat that. Almost every woman will say the same. It depends on the dr and fluid, but most stay in at least two weeks or longer. Each dr is different as to allowing showering or not. Your range of motion will be limited and you really need to rest during this time. The expanders can be uncomfortable and hard, but you somehow get used to them. The fills usually start 1-2 weeks after the drains are removed. Sleeping can be an issue. Expanders are usually in for 3-4 months sometimes as long as 9 after your dmx. Hope that's not the case for you. 😀 I was back in the gym with expanders about 4-6 weeks after surgery. The exchange surgery is much easier and recovery quicker. I was back in the gym after 2 weeks on the treadmill. My range of motion has been good. I'm just now getting some more strength back. So with being a mom with little ones, see if you can get some assistance in the beginning. You will need it. It gets better with time. I know you are scared but you are doing the right thing. It's a hard decision. I'm glad I did what I did. A lumpectomy and radiation would have left me with nothing anyway. I was small and petite. And after all the pathology came back I had tumors in the good breast, benign, but there could have been issues down the road. Good luck to you my pink sister💕 I'm also in another online support group for mastectomy and breast reconstruction only. It's a closed group. A lot of caring women there who have helped me. In case you are interested it's called Sisters in Scars. It was started 9 yrs ago by the founder Michele Martineau. You can learn more about her journey on YouTube also. I believe it's Strength in Courage. I will pray for you. There's a sisterhood in all this. We understand what you are going through. 💕😘

  • Hi Jade,

    I had a 2nd mastectomy and double reconstruction in my 30s when my son was 2 (2nd was w/DCIS and stage 1 breast cancer, after 1st mastectomy for stage 3c) . Agree with the other commenters - you will definitely need some help. The lifting issue is to try to prevent lymphedema - I got it in one arm, but not the other.

    It sounds like you've made a final decision, and I wish the best for you. Have to ask, though, were you given options and time to think about it? Depends on the kind of DCIS, and how doctors discuss things. A new website explains some of this (dcisoptions.org) and SHARE is having a DCIS webinar on 3/22 at noon ET, if this fits your timeline (http://linkis.com/org/cpAI3).

    I can't tell if you've had your surgery yet. Either way, I wish you a speedy recovery with loving support from family and friends. Also, please know that about 8 out of 10 women with DCIS (80%) of women will never have another DCIS or get breast cancer! We're all in this together, so if you'd like to talk, just let me know.

  • hi Jade,

    I also had DCIS and had a nipple spearing double mastectomy 4 weeks ago today. I had implants put in at the time. I believe this is the reason it has been more painful for me. I had and still have muscle spasms. I believe this is because of the muscle being stretched out and all the nerves regrowing and acting crazy. I started going for short walks on week two, and now I am hiking. I do have to say that the days I overdo it, I notice for sure.

    Yow will definitely need help with the little ones. I was cleared to hike, and move around. I still have weight restrictions until week 6th. I am going to start physical therapy to make sure I start doing chest exercises the right way.

    Good luck to you and let me know if you would like to talk. It is not an easy process and having support really makes a difference,

    Hugs!

  • Hi everyone thank you all for your messages. I had the surgery March 9th and it was not as bad as I thought it would be. I was driving by the second week and up and about taking my kids places. My pathology came back as stage 1a triple positive so unfortunately chemo was in the plan. I am on Taxol weekly for 12 weeks then herceptin for a year every three weeks. Right now I am 7 treatments in and finish June 30. I am yet looking forward to my exchange surgery when the chemo is over

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