Robot-assisted Nipple Sparing Mastectomy (NSM): My recovery journey

Posted by ambermcc @ambermcc, Aug 15 8:55am

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.

@ambermcc

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.

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Hi Amber,
I am a 53 year old female and have a CHEK2 gene mutation, extremely dense breasts & I’ve had right breast LCIS lumpectomy in Feb ‘23. This year I’ve had 4 biopsies & 5 3D mammos and MRI’s. The biopsies of suspicious imaging are always on the same right breast—nothing ever in left breast. Biopsy results of right breast keep coming back as ALH since Feb of this year. I have had nipple issues, swelling, pain in right breast which has been of concern since April and is also driving the worry and concern up. I am newly established UTSW (Dallas) patient and was referred to a premiere doc who specializes in the clinical trial robotic mastectomy. I met with her yesterday. I really like her. She was supportive of my imaging and biopsy fatigue and anxiety concerns. She thinks I might be ready to have a double mastectomy with reconstruction. I’m aldo considering going flat? She referred me to a plastic surgeon at UTSW. I’ll meet ASAP with him to discuss all the scary, gory details about double mastectomy with reconstruction. I am told he will go over all the different types of reconstruction possibilities—I know this is about to be a crash course of information.
My concern is the ALH that they keep finding could possibly be accompanying a lurking, still hidden cancer. There is that possibility, or also could be that the dense breast tissue is a hiding place until the next time, or the next time after that.

My question to those fighting their battle is whether their cancer first presented as LCIS or ALH? Did anyone go into an operation without confirmed cancer and wake up to find that there was cancer in the breast tissue after all?
I’m so afraid to just continue with the close surveillance plan and have the possibility of letting cancer grow and spread in my body until we can get a confirmed biopsy sample of it. I have this nagging worry that cancer is there—or should I say I have a STRONG INTUITION about it. Is anyone grappling with these same questions/thoughts/feelings? The total preoccupation and worry is starting to wear me down. Met my internist who suggested an anti depressant called Pristique that has been found to help with slight depression and a desirable decrease in the frequency of murderous HOT FLASHES and night sweats that plague me every night. I’ve been taking 10mg tamoxifen as hormone blocker since Feb ‘23. I’m just out of sorts and not my usual self. Sometimes I’m really angry about my situation and other times, I just want to stay curled up in my robe in bed all day or break down and cry because I don’t know how to pick the right thing for me to do.
Any opinion whether anyone has experienced this or tried these meds and could give me feedback and list any questions I should ask the plastic surgeon with my consult?
I don’t know if it’s rational for me to do double mastectomy—it is such a big surgery that has so many layers and steps. This worries me that I’ll regret doing something and having an awful experience or complications that cause many doctors visits and loads of money. I just want to be healthy and be there for my 17 year old daughter.
Any advice would be greatly appreciated.

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Also, Amber, I really appreciate all the info you gave about your experience. I hope you are going well thank you for contributing to this group. Thinking of you as you valiantly continue of your path of recovery.

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Hi,
So I only had one biopsy and that was enough for me. Very aggressive hereditary metastatic breast cancer in my family. I lost my mom and grandmother and every great aunt except one to breast cancer. My mother's treatment was hell. Tamoxifen and other anti cancer drugs ruined her quality of life.
I started screening for cancer at 45 and it was traumatic for me. The last thing i would think about before bed and the fist thing on waking was cancer, cancer screening. Everytime I would go to my local hospital system, provider would read my notes and point out my mother died of cancer. Real fun during breast cancer screening. They actually used it to try and pressure me to biopsy cysts. Thats how I wound up at Mayo.
I knew I was never going to consent to Tamoxifen after my mothers experience. She told me she woke up every day and wished she were dead. She kept taking it and still died of breast cancer.
Her death was slow and horrible.
I couldn't live with screening every six months waiting to be told I had cancer that was going to kill me. I dont want to ever experience chemo and honestly If I get cancer I'm not sure I would treat it.
It wasn't an easy decision to decide to remove perfectly healthy breast.
I can tell you mentally post mastectomy I feel so much better. I'm sleeping better and the intrusive thoughts of death are mostly gone.
I totally think the surgery was worth it.
Mentally it will take a while to get better. My anxiety at Doctor visits has improved.
Physically I feel pretty good.
I'm a little over 3 months post surgery and starting to return to normal activity.
Also if you decide to not do the surgery ask about lowering your Tamoxifen dose. There are some really good studies showing lower doses are effective.

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