This blog post is written by my sister, Diann, who had a double mastectomy with Diep Flap on October 27, 2016. She is still recovering and has written this to help women decide if they want to proceed with Diep Flap reconstructive surgery after Breast Cancer.
My cancer journey began in February 2015 being diagnosed with Stage 3C Invasive Ductal Carcinoma (ER+ PR+ HER2-). I had a lumpectomy, 27 lymph nodes removed, 16 rounds of chemo, 32 radiation treatments, and genetic testing that uncovered a CHK2 mutation. The recommendation — Double mastectomy after waiting 1 year for my body to recover from chemo.
I knew a double mastectomy was right for me because the constant worry that the cancer was in my breast tissue was too great. I was anxiety-ridden all the time. It was at my first mammogram after my lumpectomy that I decided no breast was worth what I was feeling. By the time the second mammogram came around, I knew I needed to have the surgery. So one year and one week from chemo ending, I had surgery.
Making the Decision for Diep Flap
I first needed to decide if reconstruction was right for me. And for me it was. My first thoughts were slap in a couple of implants and be done. But it’s not that easy. Because I had extensive radiation to my left breast, expanding the skin was not able to be done. Diep flap surgery was recommended to me. I made an informed decision but still did not have a clue what really faced me.
My well respected breast surgeon at the University of Michigan is Dr. Jacqueline Jeruss. She told me straight up that Diep Flap is a grueling surgery and even more difficult recovery period. But, she told me I was a good candidate. Also she informed me that long term, woman are happy with this decision. However, that being said, Dr. Jeruss told me to really think about it before making any decisions.
I also did my homework on plastic surgeons. I consulted with two in the same office at the University of Michigan. I chose Dr. Adeyiza Momoh because of his extensive knowledge in breast reconstruction, his explanation of the procedure, and basically my gut instincts. He explained the risks. He gave me statistics. He offered me two options. When I mentioned to him that my breast surgeon warned me about the difficulty of this surgery, he responded “It is a difficult surgery, but I’m working on skin and tissue, not your brain or your heart”. This put me more at ease, and I made my final decision to have diep flap surgery.
Here is a short video with Dr. Momoh which explains what women need to consider before breast reconstructive surgery:
Surgery day came and my surgery was 9 hours. (Some surgeries can last 12 or more hours.) Dr. Jeruss worked on removing my breasts while simultaneously Dr. Mohmoh and his team do the abdominal surgery where you are cut hip to hip. Then that fat and skin is transplanted to the breast area. When I woke up, I did not have any pain. I remember being in a room and the recovery room nurses talking with me.
Then those nurses started to whisper, and not long after I was whisked back into surgery because I developed a complication which Dr. Mohmoh had warned me could happen. I had a blood clot in the vein attaching the flap to my breast. They had to do another 3 hour surgery as the medical team was called back at midnight.
That night is a blur of my sleeping and nurses and surgeons checking on me a lot. The following day was touch and go for the blood flow to this flap. The machine I was hooked to was setting off a very loud alarm every 3 minutes. That could not be turned off. This was stressful, not only for me but for the nurses, the residents on duty in Plastics, and my good friend Cheryl (also a breast cancer survivor) who stayed at my bedside for many nights.
My mom and sister sat next to the machine hitting the button to turn it off. The nurse kept paging the residents, they would check me, take pictures of my breast for the “big boss” and we continued this process for another 24 hours. Those dedicated residents did not get any sleep that night! My true thoughts were if I needed another surgery, I didn’t think I would live. I was severely drained and exhausted.
Pain was controlled at all times. I had a morphine pump, and if I pressed it, I was out sleeping. And since surgery might looming again, I could not eat nor drink – only ice chips until the FOURTH day because it was touch and go if that flap was going to take. THEN finally the medical staff told me they thought blood flow was stable, and I could eat. The best food I ever ate was that half of egg salad sandwich and grapes which really helped to perk me up!
At this point things started moving forward. The catheter was removed, and it was time to get up and walk. Not easy, but doable. Pain was always controlled, and if I needed help, the nurses responded to me immediately. My first cough sent my stomach soaring into pain, but got easier after that first cough. And then there was waiting for the pathology results. Anyone who has had tests understands this wait. The call came and when they said the word “benign” from the removed breast tissue, I cried for an hour.
After nearly a week in the hospital, I was more than ready to go home. But I will tell you going home was challenging. Help was “needed!” I stayed in a La-Z-Boy for 2 weeks night and day. Couldn’t do much more than sit, sleep, go to bathroom, and sleep some more. If you are thinking about having this surgery, consider lining someone up to help you for 2 weeks. You can always ask them to leave.
Also, Dr. Mohmoh ordered visiting nurses to come to my house 3 times per week for 3 weeks. This was more than helpful because I had no idea what to look for or when to contact the doctor. My recommendation would be to check with your insurance company and doctor if this is something that can be ordered. It is a GREAT help!
I developed blisters on the lower breast (radiation side). I was given prescription ointment Silvadine to put on these blisters two times per day. These blisters turn into what they call eschars (basically dark if not black scabs typically from burns). They are not pretty.
At the 3 week point after surgery, I finally started feeling just a little better but the pain was the most challenging for me.
At 4 weeks I got out of the house by going to Thanksgiving dinner at my mom’s and went out to eat one night. But those activities did put me back in the chair for a day. Pain was my constant companion.
At week 5, improvements continued, slow though. Pain lessened. I rotated Tylenol and Motrin during the day. I would take an Oxy at night only.
Then I had a complication. The vertical incision on my left breast broke open about ¼ inch wide by 3 inches long. By the next day, it was ½ to ¾ inch wide. And by the 3rd day it was over 1 inch wide. I had to watch it closely and put vasoline on it. I had a very, very hard time with this. I got gloves so I didn’t feel the surface of my raw breast with my fingertips. For some reason this really freaked me out
The P.A. at my follow-up doctor visit told me this is all a part of it, and she switched me over to a wet to dry dressing 2 x per day. This was easier for me since I didn’t have to touch the site. I also had about a 3 inch area of incision on my abdomen doing the same thing, and at that point I was putting Vaseline on that. If it opened like my breast, I would be switching over to wet to dry. Of course it did open more. She instructed me that these types of scars can be fixed with revision surgery. (don’t want to even Think about revision surgery!)
At week 6, I was off most pain meds. Took a Tylenol when necessary. Went to grocery store and out to eat. Always tired after doing things like that. Things were looking up though!
At 8 weeks out, the opening on my breast was about 3 inches wide. The doctor told me I needed skin graft surgery and it was going to be “next Thursday.” So at week nine, back to surgery. I SO didn’t want to have to do that but knew by looking at my breast something had to be done. Surgery went well and was much better than I was anticipating. Pain was minimal and I’m thankful for that. I only took 1 pain pill the first night which helped me to sleep. The incision opening on my stomach was addressed in surgery and cleaned out. This left an opening which is about 3 inches wide by 2 ½ inches deep that I have to pack with gauze. Gross. My leg which is the donor site where they took the skin hurts the most.
And at 10 weeks post op, the PA in my breast surgeons office found a lump or thickening under my arm. She said it could be a fat necrosis or a cyst, but I needed an ultrasound to be sure. Terror strikes again. Thankfully, this lump is scar tissue. So in ending this long blog post, at 10 weeks post op, you can see this is a journey to healing.
Now, just shy of 3 months out, patience is necessary for your own sanity. I’m dealing with intermittent pain, extensive wound care that includes packing wet gauze into a gaping hole in my abdomen and wound care on the skin graft two times per day. I can’t shower. I can only sleep on my back. I tire easily.
So in making your decision to have this surgery, know that it is not an easy ride. It is long and so difficult. But the good news is, my left breast looks really great. I am cancer free and healing!!. And I am VERY hopeful for the future.
