Robot-assisted Nipple Sparing Mastectomy (NSM): My recovery journey
I underwent a preventative mastectomy at the Mayo clinic in Rochester. I participated in the DaVinci clinical trial. I didn't find a lot of information on the recovery aspect of this surgery online. I thought I would start a post in case others are on the fence.
I'm a week out of surgery and all in all I feel overall better than I expected.
The advantage to this surgery is hidden scars, easier faster recovery and possible retention of nipple sensation. I haven't come up with many disadvantages other then the Fda has concerns of the method and if its able to remove adequate breast tissue to achieve cancer prevention, and there is a lack of information from patient perspective.
I qualified for Direct to Implant reconstruction and elected for that option. I will have to say that the only personal negative experience I had here was with the plastic surgery team. I had to really push back with them that I waited direct to implant. They are very against it and it is generally not performed there in Rochester. I'm really glad I was able to go with that option.
My whole team was really excellent. I am very grateful I was able to participate in the trial. I have from what I can see so far, (still wrapped up like I head to a bdsm nightclub) really, really good cosmetic results.
I struggled with anesthesia in prior surgeries and the anesthesiologist made a huge deal out of making sure I didn't get sick. It worked, I actually felt more rested than I have in years. I woke up like a (dishevelled) Disney princess. Getting up was pretty rough but not unbearable. My aftercare nurse undid my bra and said its time to look are you ready. I said no and looked anyway. I think I said I have boobs. My surgeon Dr Piltin held my hand as I was put under and was the second person to check on me when I woke up. The aftercare team let me take my time and assured that I wasn't felling nausea before they let me leave when I felt ready.
I traveled from Springfield Missouri to Rochester, Minnesota for the surgery. They require you to stay 24 hours after surgery in the area. My surgery was Wednesday and I left for home Friday morning around 10 am to drive home.
From the Surgery through Saturday I felt really pretty good all things considered, much better than expected. The Experale begain to wear off on the drive home Sunday. You have to get up and walk every two hours so we broke our drive up over two days.
The era of the post surgical Disney Princess died in Kcmo leaving a parking lot that had some kind of weird drainage ditch/speed control across the exit drive. I screamed and cried and had a panic attack. Worst pain of the whole experience.
Made the rest of the trip home tearfully but uneventfully.
Monday I felt pretty good. The pain isnt unbearable and mostly felt like someone had beaten on my collarbone and breastbone. Occasionally i expirence a ripping, tearing pain under my breast in the fold when I have to reach across my body. Mainly wiping after the bathroom or adjusting drains. I am not able to strip my drains myself. Partly pain, partly my boobs are in the way and the bra plus padding and tagaderm make them immobile.
Tuesday and Wednesday were pretty bad probably the worst days of recovery so far. We had a severe storm system roll through that probably contributed. I had full body muscle spasms and nightmares I was being squeezed.
I have felt alot better yesterday and today.
I have zero bruising and discoloration on my breast. I had small bruises on my arms from being moved and on my back ( probably from lying on the surgery table.
I did have some broken veins on the tops of my thighs but they are fading.
My overall impression is that its its mostly discomfort with some spots if sharp pain that's mostly bearable. From a comparative standpoint my discectomy recovery was overall more difficult. I would argue that Tylenol and Ibuprofen pain management only is unrealistic. I could have used an extra day of Oxycodone. I have a persciption for muscle relaxers because of my back and that really helped.
I'm currently rotating through feelings of sandblasted nipples, brusied feeling collarbone and breastbone, itching every where, heaviness and burning in my chest.
My implants kind of feel like dense bean bags sitting underneath my skin. I definitely have retained sensation in the skin if my breast. I can feel hot, cold, itch, and the tape. It may be duller then before surgery but definitely there. I think I have nipple sensation (could be post op Phantom pain) but my nipples are respond to stimulation. I took a cool/cold shower to help with the itching and got nerps.(yeah) I was undecided as to which camp I would be in perma hard nipples or camp flat.
Mentally I feel much much better. I had realized how much the high risk surveillance had amplified my anxiety. I woke up surgery and felt relief. Even though I'm bouncing between sleeping like the dead and insomnia I feel better rested then I have in four or five years. Since my mom died of cancer and I began my own screening journey (which was extremely traumatic) I pretty much thought of cancer and dying of cancer daily. Most days it was the last thing I thought about before bed and the first thing on my mind when I woke up. That weight has been lifted and replaced with a sense of release and peace.
I'm not as sad about loosing my breasts as I thought I would be. I think my breast might actually look better. Because of swelling can't be certain but I think I may have got a slight size upgrade. I've taken before and after photos that I can edit to make less NSFW and plan on taking more after they remove the dressing.
I still have my drains and hoping I can remove them this weekend. They are uncomfortable but not quite as terrible as I thought. They are annoying and people look at you weird in public. Very difficult to hide no matter how big the shirt is.
Thanks for reading I hope this can be helpful to someone.
Interested in more discussions like this? Go to the Breast Cancer Support Group.
I had my two week follow up Wednesday. The hardest part was traveling. That took a lot out of me. Since my pathology was clear I have graduated from Oncology and have been turned over solely to plastics. The worst of the pain was week two outside of travel. I have developed a hatred of I 35 north of KcMo both directions suck. Probably just avoid Missouri in general after any type of surgery. I'm pretty sure some of our roads haven't been updated since the Roman empire.
The tagaderm dressing was removed at my appointment. It left some marks on the skin surface that are fading. It felt so amazing to have that removed.
The pain has subsided to more like discomfort. It's a tight, burning pulled muscle sensation. I can start gentle range of motion exercises, otherwise no activity more strenuous than watching tv or reading and two walks a day around the block.
I have sensation in my breast. Its very faint in the nipple area limited to pressure and movement. The rest of the breast skin I can feel hot and cold and touch.
Nerve damage feels like what I experienced in the past with broken foot and sciatica. It feels like i have a string tied around both breast. There is a feeling of a gap between the skin and the body. Im at the point where touch causes discomfort. It feels almost like electricity, vibration. I learned from my broken foot you have to keep working at tolerating touch after nerve damage. I try and touch them while I'm showering. I have found salonpas herbal pain relief patches very helpful. I put them on the front of my shoulders before bed. I tried lidocaine patches but they irritated the skin.
I still have some swelling that needs to go down. I can transition to a sports bra with light compression. Unfortunately only one of my current bras fit. The compression bras they sent home don't prevent jiggling. I'm sure I will appreciate the natural look of some breast jiggle later. It's definitely not fun right now. I'm going to attempt a trip to Vs/pink to try on sports bras.
I love my surgery team at Mayo. My breast look amazing. My oncology nurse said they looked like textbook examples of reconstruction. Its funny the difference between the disciplines. Oncology is like this is amazing we are so thrilled and plastic is like meh we see how they look in 3 months.
Initially I thought I would need fat grafting to balance differences in shape and size between my right and left. Unless one drops significantly more then tje other or nipples cave in I'm pretty happy with my results. I really liked my breast before surgery and was super worried they wouldn't look nice. Totally not the case. I think they look better than prior to surgery.
If you can have your surgery at the Mayo clinic do it.
@ambermcc, thank you for documenting your recovery journey. I updated the title of your discussion to reflect the intent of your helpful posts to "Robot-assisted Nipple Sparing Mastectomy (NSM): My recovery journey".
Is there anything that you wished you had known before surgery? What is your top tip for women preparing for this surgery?
Hi @ambermcc,
I'm considering an elective lateral mastectomy (had nipple sparing mastectomy on the right in 2019).
My surgeon then, Dr. Jakub is now at Mayo in Jacksonville. Can you tell me who your mastectomy surgeon was? Were you happy with him or her and with your results?
Thanks for your thoughts.
Hi, The mastectomy was performed by Dr. Mara Piltin and Dr Vijayasekaran
performed the reconstruction. The results were amazing. I couldn't be
happier. Every aspect of care at the hospital was really great. I would
recommend anyone to use them.
Thank you @ambermcc for all of this detail. I’m scheduled for a nipple sparing mastectomy and reconstruction next week. However, I will not be going direct to implants. All of your details were appreciated. I live in Missouri and agree on your assessment of the roads. 🙂 Thanks again for your brave and candid details. I’m hoping my experience and KU will be as good as yours at Mayo.
Thank you so much for shating your experience! I’m recently diagnosed w/ BC and having bilateral mastectomy…still have to have my consult with plastics.
Did you have the fixed volume implants? I’m interested in learning more about them and I definitely want the direct to implant if I qualify!
How long was your surgery? TIA! Wishing you the very best in your continued recovery….your post has been much appreciated!
Hi,
I didn't know going in what size or even which density of implant I was giting. Prior to my surgery I wore a 38 B bra. I measured a 36 c at fittings, but the cups were always too large. My surgeon picked my implant. At Mayo they only have Mentor. I told them I wanted more projection and to not have flat round boobs in my arm pits. She used the memory gel moderate plus boost. And 370 cc size. If you do direct to implant they will probably tell that you will have to go the same size you are or smaller although i wound up with either larger or at least fuller looking breast. I'm afraid they are a little firmer than I wanted but they may soften a bit more as my chest muscles continue to relax. Otherwise I'm really pretty happy with how they turned out. Not knowing what kind of implant and size I was going to receive was pretty nerve wracking but it turned out alright in the end. Good luck with everything!Xx!
Thanks again for taking the time to answer and help a BC sister navigate this journey. Do you know how long the surgery took?
❤️🤟
I had a robotic mastectomy. I dont really remember but it was a long surgery due to having to set up and then move and remove the robot, it was like 5 or 6 hours could have been longer. I was the first case and it was getting dark by the time the had me going home.
Sorry I fibed my implants are 470 cc.