what's it like to have a mastectomy/reconstruction

ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I have invasive intraductal carcinoma with a tumor of 1 cm. Digital mammography also revealed some 'calcifications' contained in the duct behind the 1 cm tumor. My mind is made up to have a mastectomy because of the fear of recurrence, even though I understand it can still recur in the breast wall and there are no guarantees. At least I have made progress in the sense that I made a decision, whereas before I was going back and forth. Can someone tell me what's it like to have a mastectomy - what is the recovery like, do you have pain, feel uncomfortable, etc. How long before you were able to go back to work? Did you have reconstruction and if so, what type? How did it look? I am truly scared of this procedure, but I am more scared of dying. Any feedback would be appreciated. Ohilly Oh, one more thing - can anyone suggest a good website with 'before and after' pictures? Ohilly


  • phoenixrising
    phoenixrising Member Posts: 1,508
    Hi Ohilly, Can't help you out concerning the reconstruction as I haven't had it yet nor do I know if I will but as far as the mastectomy is concerned there is less pain than imagined. I wasn't on anything stronger than tylenol 3's and it was sore but more numb due to the nerves cut during surgery. I can't remember how long the drain was in for but the nurses were pretty happy with how it was healing so I don't think it was too long. Chemobrain!! It can be a bit of a pain sleeping, showering and dressing with the drainage tube but it doesn't last long. For a while anything touching it bothered me so I wore loose clothing and held my seatbelt when driving. It is still numb after about a year and a half but it takes nerves a long time to heal.
    Hope this has helped
  • jackiemanz
    jackiemanz Member Posts: 85
    Hey Ohilly! I had a bilateral mastectomy with reconstruction at the same time last February. The pain was not that bad if I remember correct I only took the pain killer for the first few days. It was hard getting dress for the first few days so you will need help. Also you'll have to sleep sitting up and with me the first few days I had a hard time getting out of bed. Until I learned how to roll out of bed without pulling on the drains. I was out of work for 7 weeks because I had a Hematoma a few weeks after the surgery so I got behind in the healing process.

    At first I had a hard time looking at myself in a mirror. They just didn't look the same, feel the same and seeing myself with no nipples was depressing. Today all is fine I have feeling in the left breast and the right one I still have some numbness but it just takes time.

    Just keep your head up and think postive thoughts. You will be fine.

  • Chris212
    Chris212 Member Posts: 2
    Hi, I had a bilateral mastectomy with reconstruction on Dec 17, 2007. Physically, the surgery and recovery were pretty easy. My plastic surgeon moved to the area 2 years ago after spending the last 13 years teaching at the University of Florida Med School. This had several advantages: First, since he is new to the area, he has fewer patients than most docs and spent a lot of time with me. Second, he is up on the latest techniques. I left the hospital after 24 hours with NO DRAINS, permanent implants (no expanders), and a sports bra. I had little pain but was sore. I highly recommend the no drains option. The doc can drain your breasts in his office if there is fluid buildup. During the draining, you don't feel anything. The second day, I walked to the corner of my street and back. Then, as the anesthesia euphoria wore off, I became slightly sorer. I was able to get through the first week on only the occasional percacet (sp?) at night to help me sleep. I mostly relied on Tylenol or Tylenol PM in the evening. I did have some strange pains: sharp pain in my side due to upset nerve endings and irritation at the incision site. Tylenol helped. By week 4 all pain was gone even though I was still sore and tired. I thought I could go back to work but since I have a high stress job, my doc wanted me to wait 6 weeks before I went back to work. Also by week 4, I was walking 3 miles a day. The immediate reconstruction definitely has advantages: hopefully only one surgery, no expanding. The doc was supposed to install 450cc implants which were going to be smaller than my previously very large (and droopy) breasts. Because my skin was not able to stretch, he was only able to install 360cc implants. Therefore, I have gone from a DD cup to a B cup. This has taken some getting use to (the psychological part). But, I dealt with this by going straight to the store and buying cute spaghetti strap tops. This lifted my spirits because I have never been able to wear this style. My doc has insisted that it is no big deal to go back in later and install larger implants. I have decided to wait and see how I like my new look. It “grows” on me every day. My breasts aren't perfect, but they weren’t before either. I am definitely starting to love my “young, perky” breasts! Good luck with your surgery. The hardest part is making the decision to have the mastectomy which is behind you. You will still have those “I can’t believe this is happening to me” moments. Immediately after surgery you won’t feel great but it is definitely bearable. Every day you will look and feel better. Good luck!

    Feeling Marvelous in Florida

    Ps: How could I forget? My biggest problem was constipation 1 week from surgery (11pm Christmas Day). I thought I would die. Be sure to ask your doc for stool softners!!!
  • KathiM
    KathiM Member Posts: 8,028 Member
    I'm going to be brutal, so skip this if you must. In the final analysis, it truly is your comfort level. BUT, that includes what your comfort is in the outside world. I don't know how old you are, Ohilly, but a mastectomy in today's society WILL cause some extra interest, especially if you don't do reconstruction. Or, like my good friend, if you can't do reconstruction (she had so much trouble with infection with the implants, she had them out). Unfortunately, unless you have one of the 2% of men, this will also make a difference in bed/sexual relations.

    Again, if this doesn't bother you, then don't let it. I wear a bikini now, even tho it reveals all of my surgical points (lumpectomy scar on the breast, under the arm...bowel resection scar on my belly from rectal cancer). I get looks, but then I look around and see these 300 pound people in speedos, and, well, I feel beautiful.

    Sorry to bring up the dark, seemier side of society, but it is was it is. As a 2nd-half-of-the-century woman, it seems that it doesn't matter as much to society, but if I were in my 20's, well, who knows....I obviously am not as immune to public attention as the very strong and brave ladies here....

    Just my take, sorry if I upset...

    Hugs, Kathi
  • grandmagail
    grandmagail Member Posts: 28
    I sorry about your cancer. I had invasive ductal carcinoma and my tumor was 2.5 cm. I had a bilateral because spots showed in the other breast which turned out to not be cancer. My nodes were clear and they sent my tumor to Oncotype for recurrence rate. I wound up only having to be on Arimidex for five years so I feel really blessed. As for the surgery, it was not painful at all. I did come home with two drains and they came out after two weeks. That long only because the output was too much after one week. They don't hurt. They are just awkward but you learn to adjust. I needed help with washing my hair and that's about it. I slept in my recliner because only sleeping flat on my back caused me to be uncomfortable. My daughter did stay with me a few days and it was a big help. I have a physical job and took two months off, although I believe I could have gone back after a month or so with some restrictions. I am 64 and did not opt for reconstruction so I don't know about that. I do know that, for me, the operation was a breeze. Good luck to you.
  • survivor51
    survivor51 Member Posts: 276
    I had a bilateral mastectomy and reconstruction at the same time. I did have drains but it wasn't that bad because they are only in about 1 1/2 week. The mastectomy was not a problem at all and I did have the constipation mentioned earlier. I found that it was due to the pain pills. Drank plenty of water and took lots of nice hot showers. I could shower within 24 hours. They took muscle from my back and moved it to the front. Put in expanders and each week filled them slowly until it was the amount of my original breast. After chemo, they took the expanders out and I got the new "girls". I would do it again in a split second. The scaring is almost nonnoticable. I have not had the nipple replacement and not sure I will. I can wear a tshirt and no tiny bumps from a nipple to hide. I can go braless in a white shirt and it looks fantastic. It does take adjusting to the numbness but it is slowly returning. I had my mast March 17. I also sent you an email earlier.
  • seof
    seof Member Posts: 819 Member
    I can't remember the websites I found that had pictures, but some of them do. Just search various sites related to "mastectomy", "breast reconstruction", or related topics. I had double mastectomy with 7 nodes removed on 12/23. I was home for Christmas with my husband, Mother, and 2 pre-teen daughters to help. I took pain meds the first day, and off and on for a few days after that, if I was going out or being more active, but it was not bad. I had drains, but I had been warned ahead of time, so I got 2 post-mastectomy camisoles (1 from ACS catalog called TLC, the other from the hospital gift shop). They are comfortable and have pockets designed to hold drains...I highly recommend them, but get a size larger than your normal t-shirt size. The drains make a lump under clothes, and you may have trouble lifting your arms for a few days, so it is useful to have loose-fitting shirts that fastem in front. A wonderful tip about showering with drains...get a strip of gause to tie around your neck like a necklace to pin the drains to...lets your hands stay free and keeps the weight from pulling on the incision. I slept in a recliner, or with lots of pillows in bed to keep me semi-upright...it made it easier to get up...and I stayed on my back (used to sleep on my side). I want to have reconstruction, so the plastic surgeon put in expanders. The drains were out for me in about 2 weeks. I was off work for 6 weeks. I felt well enough to go back after 5, but they had to get a sub and had to have specific dates, so it was 6. I have been back to work for 4 days (I am a Speech Pathologist in a public school setting) and have been fine. I have to finish chemo and radiation before the reconstruction surgery can be done, probably close to a year from now by the time the effects of radiation are healed up. I prefer the idea of using my own tissue because it rarely has to be redone, whereas implants usually will have to be replaced eventually. Recovery from surgery using your own tissue is generally more difficult, so that's a disadvantage. However, my experience with the expanders is leading me away from implants as well. They are not painful, but after 7 weeks I am still constantly aware of their presence...like I have a plastic bra that is a bit too small.

    Best wishes with all your decisions.
  • manna1qd
    manna1qd Member Posts: 46
    I chose to have a mastectomy with tramflap reconstruction. The other breast had to be reduced. Ha, the surgeon said he couldn't reproduce the sag! I didn't want to put in the four days post op at the hospital or do the six hour surgery but I knew I deserved what was the very best choice for me. I recovered quickly, out of bed and walking post op day one. My pain was well controlled. I remember getting out of the shower and finding that reflection in the mirror beautiful! Afterall, I not only had new breasts (no sag) but a tummy tug. There was scaring of course, and the drains but I felt so beautiful in spite of the rest of it. I have always treasured waking up with two breasts. I never felt I lost a breast in the physical sense. I don't want to minimize that I lost a breast, and feeling in the breast and again, all the hell of the experience generally. I just felt the plastic surgery was a very silver lining in a very dark cloud.
  • manna1qd
    manna1qd Member Posts: 46
    two things to add: it was a tummy tuck of course, not a "tug". Your plastic surgeon should have some before and afters of his work. This greatly reassured me that I was doing the right thing for me and had the right surgeon. I was so encouraged after that consult!