Tips for Bilateral Mastectomy with Immediate Tissue Expander
My Breast Cancer Journey from the perspective of a physician/patient/wife/mom of 3 boys and 1 pup:
Dec 2022- First screening mammogram (Age 45, no risk factors) found over a 5 cm area of microcalcifications of left breast near nipple, which then led to 4 additional mammograms and ultrasound biopsy.
Biopsy showed DCIS, high grade on left; right breast was healthy.
Hard decision led to Bilateral mastectomy with removal of nipples (was told there would be a 10% chance of cancer affecting the healthy breast over my lifetime). Prior to surgery, I had small breasts.
Feb 8 2023- Bilateral mastectomy with left sentinel lymph node biopsy (ie. 2 lymph nodes removed) and immediate reconstruction with placement of tissue expanders, skin sparing but not nipples.
After couple weeks, the pathology results showed DCIS extending from pectoralis muscle to the skin, except for 1 area of microinvasion (1.3mm), lymph nodes negative, ER-, PR-, HER2+. Stage 1 A. Recurrence rate is low, probably <5%.
No radiation or systemic chemotherapy needed.
Implant exchange planned for this May.
TIPS TO SHARE WITH OTHERS GOING THROUGH THIS:
- Arrange support, support, support! Family, friends, neighbors, doggy day-care got me through this.
- My healthcare team members were very supportive, though some had different bedside manners. Their differences took me by surprise at first, but their hearts and minds were in the right place.
- The nurse from the breast surgery clinic gave me a packet with instructions, including suggested items to buy for recovery post surgery which all came in handy (pillows, to drain shirts, surgical bra etc). She gave me a drain belt which I used along with the drain shirts.
- American Cancer Society is a good resource for post-op exercises. I also was connected with a local breast cancer survivorship program which suggested that I get physical therapy arranged after the surgery (at 3 weeks post op mark had 1st appointment). This was extremely important in my recovery!
- By speaking with other survivors, I made a few other helpful purchases: body wipes as I didn’t feel comfortable showering with my drains in, although you can if you dress the wound site to prevent infection (drain shower caddy may be helpful), and front zip sport bras.
- Plastic surgeon’s “breast exam” is different from what we women typically think of a breast exam. Measurements are taken in varying dimensions of your breasts like breast protrusion, distance from nipple to clavicle etc. It does feel odd, but I had remind myself that he is tasked to build something out of nothing, essentially. Though decisions can wait regarding details around reconstruction, there is A LOT of information to digest (implants vs flap, nipple reconstruction vs tattoo). Few things to note from discussion: Silicone breast implants have very small risk of associated lymphoma, small risk of breast implant illness, and different sizing options like round vs tear drop shaped and various protrusion levels. Implants will likely need replacing in 10-15 years to ensure integrity. MRIs are needed every 5 years or so to screen for any asymptomatic leakage. DIEP/tissue flap option has a longer recovery time but patient satisfaction is typically high. There is a small risk for graft rejection and 4 drains are most likely needed post-op if done bilaterally. Go flat option is becoming more popular but might need an additional chest graft to prevent chest from looking concave. I opted for sub-pectoral implant option as I was not an ideal candidate for the DIEP and did not want to go flat.
- Many well-wishers call and ask about the details of what’s going on. All with good intentions, but unfortunately the story is on repeat and re-lived over and over. It’s OK to say no when you don’t want to talk or OK to change the topic away from your bosom. :)
- I was being prepared for a same day surgery, but I ended up spending a night in the hospital due to some complications: unexpected blood loss due to vascular breasts with subsequent hypotension and complicated intubation due to a small airway which led to transient stridor (ie breathing difficulty). Also I had some post-op nausea, requiring Zofran. My workplace had given me an acupressure antinausea wrist band which seemed to help along with aromatherapy massage oils and an imagery guided meditation/mindfulness tape, latter helped me stay calm before the surgery.
- After the surgery, I had to share a room in hospital with a disruptive roommate, which added to my post-op discomfort. I would highly recommend bringing good ear plugs and eye shades, in case you have to stay in hospital. IV beeps, hallway noises, light from hallway all make resting near impossible. I had a pectoralis nerve block which helped with pain on first day but gradually wore off on day 2. I was given a touch sensor to call for nurse when needed, as it was difficult to reach for the nurse call button. Immediately post-op, the pain felt like an elephant was standing on my center chest, and it was difficult to take a deep breath as my chest felt very tight.
- At 5:30am next morning, surgical teams round and a lot of information is given to you while you are sleep deprived and under the influence of pain meds. My suggestion would be to instruct them to call your family or friend with that information.
- If you can, take home the large water cup with handle and straw that you use during PACU stay, as you will be drinking a lot of water. Also extra gauzes, antibiotic ointment, tape, etc are useful items to ask the hospital for upon discharge. My husband bought latex gloves, a bottle of isopropyl alcohol, rubbing alcohol swabs for milking of the drains, cotton swabs, and several different types of tape as the hospital tape was too sticky for my skin. He finally found one that worked for me called NEXCARE and bought 4x4 gauzes and tegaderm pads. Aquaphor helps incision healing. My husband had to learn quickly about wound care - main goal was to prevent infection.
- I had 2 drains, very uncomfortable and painful at times especially during the “milking” of my left drain. After 2 weeks, 1 drain was removed, but the left stayed in for few more days. My husband milked the drains for me.
- Expect restricted range of motion of your arms after bilateral mastectomy (even lifting arms out 30-45 degrees is very difficult in the early days) and hypersensitivity of skin over the lymph node biopsy site. My drain shirts with zipper closure were convenient for easy access to the surgical site for dressing changes and was made of soft material that felt good on my skin. Eventually I transitioned to button down shirts and bought a few fruit-of-loom front fastening bras and a post-mastectomy camisole. The restricted range of motion of both arms was also difficult to deal with as I was so dependent on others. I couldn’t wash my hands under the sink as I couldn’t move my arms forward, as an example. Creative ways of washing were undertaken, like placing hand sanitizer in the bathrooms, or using a bowl of water to wash hands, or having my mom help wipe me down with body wipes and with dressing. Would recommend having some oversized sweatpants/elastic waist pants to easily slide in and out of.
- Post-op: I experienced different types of neuropathic pain, typically not all at once: electric type zaps over chest, pins/needles, and burning, particularly where nipples use to be. The milking of the drains sometimes triggered the onset of the neuropathic pain. Also I had a severe discomfort (ie heaviness/ache/like you got punched) under left armpit where lymph nodes were removed, despite not having much lymphedema. The pain after the surgery is quite severe so keep up on your pain meds and don’t forget the muscle relaxant. I underestimated the neck/back muscle spasms but they came in full force. Heat, massage and a warmed up “rice” sock helps. Also your posture changes during the early days post-op as you tend to hunch in a flexed position to guard against the pain, which leads to your balance being slightly off. Getting out of bed is tough as it seems like your core strength is knocked out. I slept in a recliner for first few days. Neck travel pillow also was used a lot. Sleeping is tough as you need to rest on your back (not on the side due to the risk of tissue expanders moving). I eventually transitioned to the bed with a bunch of pillows, and my husband helped me out of bed for first week or two. Eventually all of the pain/weakness/discomfort gradually subsides over 6 weeks or so. I unfortunately had continued pain under my left breast and into ribs below, which turned out to be due to superficial thrombophlebitis. I took ibuprofen and eventually aspirin 325mg qd x 7 along with application of a heating pad to the area (Caution-when using heating pad, avoid burning your skin as you are numb). It took me a couple months or so for this pain to go away. I have sensation over sternum and some over medial aspect of temporary implants/tissue expanders but majority of the area is numb (able to feel some pressure however). I am also numb in left armpit and back of lower shoulder due to lymph node removal.
- Pain meds: I took Oxycontin for first 2 weeks when pain was severe and then transitioned to Tylenol and ibuprofen around the clock with tapering off over next 4 weeks. Also bought some omeprazole to help protect my stomach from the ibuprofen. Muscle relaxant helped as well. Make sure you take some stool softener while on the oxycontin to avoid constipation.
- I saw my bilateral mastectomy incisions about 5 days after the surgery- approximately 3 inch horizontal incision where the nipples use to be. The incision scar stretches as tissue expanders are filled.
- If it is winter during your surgery, have oversized open sweater cardigans and an oversized winter coat (I used my husband’s), especially for the first 5 days post-op if you plan on leaving the house, as your arms are restricted in their range of motion. An oversized robe/cozy slippers are nice, but you might need help getting robe on during the early days.
- Time off from work: I took 6 weeks of FMLA time off from work after bilateral mastectomy with tissue expanders. On my return, 1 week of a lighter work schedule was arranged. I have requested 2 weeks of FMLA off from work for my upcoming bilateral implant reconstruction.
- Travel: I went on flight 4 weeks post-op with tissue expanders in place; I received medical letter as there is metal in the tissue expanders, and it can trigger scanner at airport security. I did not have to lift my bag as I had a small carry-on that fit under the seat, but one can ask for help from flight attendant.
- Tissue expanders were filled to 50 cc immediately at time of bilateral mastectomy. Over a couple months expanded to 400 cc each. Was told approximately 200cc equals 1 cup; however one’s body size may change the proportions of how big or small the implants appear. Tissue expansion during fills was painless to a dull pressure. Occasionally took ibuprofen prior to the fills. Stretching sensation goes away in a day, but tissue expanders are uncomfortable all the time- feels like a corset or an iron bra is on!
- 3 weeks post-op- Able to walk 1 mile on elliptical and used arms bars to passively range arms back and forth. Had low back ache and left arm pit felt very uncomfortable. Worked with physical therapy to help with pain and with restricted range of motion of arms. Started to drive! Wore sports bra for a period of time. Initially the sports bra felt too tight and I only wore post-surgical bra. I preferred to wear post-surgical bra at night.
- 4 weeks post-op- Physical therapy diagnosed me with “cording” under left arm pit (kind of like scarring/connective tissue formation) which likely contributed to my pain. They stretched it out and taught me exercises to alleviate pectoralis muscle tendon tightness. Was cleared to do some overhead activities.
- 5 weeks post-op- Some limited range with overhead activities but getting better. Tight pectoralis muscle tendons had to be stretched out frequently. Shopped at the mall. Had a 10 lb weight restriction. Still with pins/needles sensation over former nipple areas during the evenings, though lessened in severity. Tylenol helped relieve that discomfort. Walked 3 miles on elliptical.
- 6 weeks- Range of motion better but not totally back to normal; getting close though; physical therapy gave me a set of instructions regarding exercises and stretches to do at home. Plastic surgeon instructed me to avoid planks/push-up/laying on chest to prevent displacement of tissue expanders. Started exercising with some very light weights.
- 7 weeks- Intimacy with husband: I felt more comfortable keeping my camisole on while with my very patient husband. With contraction of my pectoralis muscles, I can see the tissue expanders/temporary implants sort of ripple/move under the skin. Feeling unsure about your new body is normal.
TIP FOR MEDICAL FIELD TRAINEES: Please remember that patients are real people and though you might be in a hurry as you are juggling a number of things, please take time and care with dressing checks as patients are typically in pain and sleep deprived, call patient’s family members if asked, and always leave the room as you found it, especially at night when hallway lights can disturb a patient’s rest. (eg. close the door as you leave room).
Will update after my implant exchange in May.
I hope my experience helps others.
Thanks for sharing.0
Thank you for sharing! My mastectomy/reconstruction is this Monday and I am so nervous. Your tips are very helpful.0
gdoves Member Posts: 1
Thank you so much for sharing. Just had my nipple sparing bilateral mastectomy/tissue expander reconstruction on Thursday, 5/11 for left breast DCIS, healthy right breast. I'm only 3 days post-op and gotta be honest, this is no walk in the park. I've already had two lumpectomies a few weeks back and they were nothing compared to this. What you've described above is pretty accurate so far with what I'm feeling and I really appreciate reading about when you started feeling more like yourself. I only used the OxyContin for the first couple of days because it wasn't worth the constipation/stomach discomfort. Switched to around the clock Tylenol/Ibuprofin/Gabapentin instead. Just can't wait to get these drains out because I feel the port from the drains is the most painful area especially since it's right under the removed lymph node under my left arm. Hopefully on Friday, 5/19 when I go to see my plastic surgeon, they'll be ready to come out. Thanks again. And best of luck, dlattimore22.1