By Danni Moss
Copyright protected, all rights reserved
One of my surgeon’s goals in doing chemo before surgery was to be able to do a lumpectomy instead of a mastectomy. If I had surgery first, a mastectomy would have been a necessity. However, through the process of chemo I was able to thoroughly research my surgical options, spend time processing the reality of having cancer and what I wanted in surgical results. I also talked to a lot of other breast cancer survivors about their experiences and asked lots of questions that you really can’t ask a medical professional since they’re on the other side of the knife and have different priorities.
Since I had a 2-year-old I eventually decided I didn’t want to have a lumpectomy. I wanted to maximize my chances of non-recurrence by having a mastectomy. I needed to do everything humanly possible to be here to raise my daughter. However, I also wanted to end up with the best possible aesthetic results, too. Ultimately, I decided on a bilateral mastectomy. My surgeon fully agreed that if I didn’t feel comfortable with a lumpectomy a bilateral mastectomy with reconstruction would give me the best end results.
I also evaluated a lot of reconstruction options. My first choice was to have DIEP flap reconstruction. This is a reconstruction that uses abdominal fat for the reconstruction using microsurgery to establish blood supply. It is very intensive surgery and requires an expertise only available through a relatively few surgeons nationwide.
The one thing I definitely didn’t want was implants because I was concerned about long-term health risks. Also, implants are supposed to be replaced every 10 years — something most people don’t know. But if the manufacturer says they need to be replaced every 10 years and there is a significant amount of controversy about health risks if they rupture, not replacing them seems risky to me. And I knew I had to way to guarantee that I’d be able to replace them every 10 years.
I ran into some difficulties when it came time to have surgery. My insurance would not pay for the DIEP flap reconstruction. They would pay for 80% but I would have to pay for the rest of a very expensive surgery. And the only doctor in my area who was able to do the surgery didn’t accept insurance. So I’d have to make some kind of arrangement, get paid by the insurance company, and then pay the doctor. That sounded like there were way too many places things could go very wrong and leave me with an astronomical medical debt.
There was only one plastic surgeon on my insurance who would do anything besides implants. He told me why. The insurance company would pay doctors $2500 for implant surgery — a single, 2-hour surgery. They would pay the doctor $3000 for the other reconstructive surgery — a 7 hour surgery, followed by 1-3 additional surgeries to finish the reconstruction.
My second surgical choice would have been a free-TRAM reconstruction. This surgery is similar to the DIEP flap but uses a bit of abdominal muscle as the blood supply source. In the process I learned that different doctors do the surgery different ways, apparently. Some completely sever the abdominal muscle to take a piece for the reconstruction. This effectively destroys the function of the muscle. Some take part of the muscle without severing the muscle.
The problem I faced with this surgery was that my doctor would have to have a second doctor come in to help with the surgery because doing a bilateral free-TRAM reconstruction would have been a 12+ hr. surgery for a single surgeon and my doctor was not comfortable with a patient being under anesthesia for that long. This would put me back into the same problem I had with the first surgical choice since there were no other doctors on my insurance who would do the surgery. Plus, it would require an additional wait time to coordinate the schedules of two doctors — and time was at a premium since the cancer was actively regrowing.
I ended up choosing to have a pedicle TRAM – an option I didn’t like but felt it would be better than implants. A pedicle TRAM is similar to the DIEP flap and free TRAM except that the rectus abdominus muscles are severed at the bottom and completely redirected to provide the blood supply for the reconstruction. The rectus abdominus muscles are the primary vertical abdominal muscles that provide balance in standing upright, along with many other functions. This means you must sacrifice significant function for the sake of the reconstruction. There is permanent muscle loss and the permanent risk of herniation. I had heard from a lot of people who did not like their results from this surgery, but I felt it was a better choice than implants — and those were my only two realistic options.
My first surgery, Nov. 19, 2004, was 7+ hours and I had to have a blood transfusion during the surgery. Cancer-wise it was a success. I have only one hot lymph node out of 7 removed, which means the chemo pulled the cancer out of them for the most part. I also had clean margins on the primary tumor.
I knew the surgery would be hard and it was every bit as hard as I expected, and then some. I had a bad reaction to the pain medication after surgery so every time I woke up I started having uncontrollable dry heaves. Dry heaves with a hip-to-hip incision equal unimaginable pain! Way off the top of a ten-scale. My friends tried to tell the nurses it was the pain meds but the nurses insisted I had to be able to tell them that myself. I wasn’t lucid enough to understand or communicate that for about 24 hrs. Once they finally switched the pain meds the nausea stopped.
The second night (a little over 24 hrs after coming out of the first surgery) I had to go back in for another surgery to remove a large hematoma in one of the reconstruction sites. During that surgery I also had to have another blood transfusion.
I was in the hospital 4 or 5 days – I don’t remember exactly. I don’t really remember much about it — good drugs. 😉
Someone told me the best way to survive the post-surgical period was to have a recliner since getting in and out of bed with the extensive incisions would be extremely difficult. They were right. I lived in that recliner for 3 months. While the doctors say it takes 6 weeks for recovery, everyone I talked to said 12 weeks. Again, those who had “been there, done that” had the real scoop. Week 13 I started to feel like a human again.
The surgical drains were a whole lot of no fun. The first one they pulled hurt like crazy. Then fluid built up so I had to go back in and have it removed a couple days later. Very no fun and gross, too. It was six weeks before the last drain was pulled. It was wonderful to have them gone!
I had two additional surgeries in 2006 to finish the reconstruction. Each was a 2-hr. outpatient surgery. The second surgery was far more extensive than I expected. I didn’t know just how much they had done until a week after surgery when I went to have the drains pulled and they showed me the incisions. I was grateful I didn’t have surface sensation (side effect of the first surgery) because there was virtually no pain. The third surgery was a breeze and didn’t slow me down at all once I got the anesthesia out of my system.
I am far less than pleased with the end results. I wish now I had chosen implants, with the option of doing one of the other reconstruction options later if the implants didn’t work out. I do not like the pedicle TRAM at all. The loss of muscle function is distinctly limiting. I especially do not like the way my internal organs visibly sag since there is no muscle support. Ick!!!! I am permanently limited to about a 30 lbs. limit on weight I can lift. This is impractical with a very young child. I will never be able to do a sit-up or sit straight up from lying down. Standing for any length of time causes back strain because of the imbalance. I bump my nose on these limitations on a daily basis.