I just wanted to share my experience so far in case it will help anyone else out there going through the same thing. I was diagnosed with high grade DCIS with cancerization of the lobules in April. I had a lumpectomy with 2 re-excisions that still had positive margins in May and June. I didn’t feel that another re-excision would be successful as the second one showed more DCIS than the previous re-excision. Next step, mastectomy with reconstruction. My local hospital had limited options for reconstruction. I preferred autologous and immediate reconstruction, but my only options locally were mastectomy with skin expander followed by delayed DIEP reconstruction or implants.
I had one plastic surgeon tell me he would do an implant under the muscle, and he thought DIEP was overkill. The other plastic surgeon gave me both options but couldn’t do DIEP at the local hospital and I would have to go to a different hospital after the mastectomy with skin expander was completed and healed.
I then decided to get a second opinion at a university hospital about an hour away. The second opinion included full review of imaging and pathology before scheduling the appointment. It was really hard to wait that long but finally got an appointment. Diagnosis was confirmed and the breast surgeon and plastic surgeon felt I was a good candidate for immediate DIEP reconstruction after skin and nipple sparing mastectomy due to only finding DCIS in previous surgeries with small areas of positive margins. It was willing to take the risk of potentially requiring radiation if any invasive cancer was found or if margins were still unclear after mastectomy.
Next step- surgery took place July 24. A nerve block was done to help with the mastectomy pain and a catheter was placed after I was under anesthesia. The first day of recovery was a blur. I woke up with a surgical bra and abdominal binder and in a beach chair position. I had a drain in my breast and two drains in my abdomen. The plastic surgery residents and medical students came in every hour to check the skin flap and do a doppler pen to check the artery in the breast. This was a little stressful because they had a heck of a time finding it each time and I worried I’d have to go back to the OR but all was well. The nurses took care of emptying the drains. Pain meds were tylenol and a muscle relaxer alternated with toradol injected in my IV ( that one burned!). They informed me that I could have oxycodone if I asked for it, which I did. Everyone is different, some don’t need that extra pain medication, but others do. I think if I could have iced the surgical areas, I wouldn’t have needed stronger pain meds, but you can’t so I did take them as needed.
Most of day 2 was watching Lord of the Rings and DC comics movies in between frequent naps and hourly checks again. The catheter came out and then I was able to go for a short walk with the physical therapist and occupational therapist. I was allowed to sit in a reclining chair and use the bathroom. Thankfully I didn’t have any dietary restrictions and my husband brought me one of my favorite comfort foods for dinner, grilled cheese with tomato and fresh baked cookies. Meds were the same and checks dropped to every 2 hours early evening.
I was discharged on day 3 and went home. I took my first shower and had a good look at my breast and incisions. The skin flap island was positioned at the bottom of my breast and was much larger than I expected, it was very disconcerting to see. Because of the swelling, my belly button was/is still off center and higher. The drains were a bit scary at first, making sure I cleaned with a fresh washcloth around each drain , and then stripping the tubing. The nurse made it look so easy and could strip the tubing in one motion, definitely not something I was able to do. I put gauze under each tube and then over it to keep it clean.
Putting on clothes…I have to admit I gave up on trying to wear underwear or pants the first few days because of where the drains were inserted. I had purchased two robes with drain pockets and wore those. I then started wearing the lounge pants and shorts I purchased at goodwill along with the mastectomy hoodie several days later. With the extra fluid retained, I needed 2 sizes larger than what I normally wear, so they experts were correct about that part.
After 2 days home I was allowed to ditch the uncomfortable surgical bra and wore a more comfortable front closure bra. Padding with gauze was a must for me for comfort. I also started wearing a soft cotton tank under the abdominal binder. That helped with the itching. The binder also rides up now and then and puts some pressure on my breast incisions and drains. I had to undo the top strap of the binder when trying to sleep.
Sleeping was good for the first week. I had purchased a power lift recliner that helped tremendously. However, one of the wires broke somehow about 5 days after I got home. My bed was too high to get into easily and I ended up in my husband’s manual recliner. We had to put several pillows in it to prop me up because I was too short, and then he had to put me in the reclined position, prop pillows under my legs, and cover me with blankets and make sure I had my meds and a drink. Once I was in that recliner, I couldn’t get out without help. I tried a few other locations without much luck getting comfortable. After the breast drain and one of the abdominal drains came out, I can now get in my bed. I’m still not able to get a full nights sleep all in a row though, I tend to sleep 4-5 hours and then am able to get back to sleep for a few more hours after taking another dose of tylenol or ibuprofen.
A few other random items:
A claw reach device is very helpful though it was hard to pick up remotes and cell phones which I dropped all the time!
A pill organizer was helpful. I was so tired, I couldn’t remember which medication I took last or if I slept through it. I was alternating ibuprofen and Tylenol plus the muscle relaxer and stool softener. I did have oxycodone for breakthrough pain. I needed that once a day and mostly only if I slept through a dose of the other meds.
In my experience , the pain comes and goes for whatever reason. The abdomen area hurt more at first, and now the pain is worst in my breast near the center of my chest where they removed some of my rib cartilage.
There was some confusion about when drains can come out. My ERAS (Enhanced recovery after surgery) book said <30 ml per drain per 24 hours, but my plastic surgeon nurse told me it was really 20 (very disappointing!). I really , really hate the drains but I understand they are necessary.
I can’t think of anything else, but will add to this again when I get thorough week 3 of recovery.
I hope this is helpful to someone else out there going through a similar journey.
and hope you’re on the way to a speedy recovery ! X