Personal description:
I am 33 years old and the mother of two children aged 2 and 4 years. I was 32 years old when I was diagnosed with breast cancer in March 2010. With ultrasounds, I had been tracking a few lumps in my left breast for a full year before I was finally diagnosed. When they did the biopsy in March, I had 8 lesions and 3 nodes involved. I immediately met with my oncologist and surgeon and they recommended starting with chemotherapy to shrink the tumors. The cancer I had was Estrogen and Progesterone receptor negative and Her2 positive. I also did genetic testing and my results were negative for both BRCA 1 and BRCA 2. My surgeon recommended a unilateral mastectomy with reconstruction with the chance to remove my right breast if I wanted later on. She also suggested getting an implant so that my recovery time would be shorter and I could get back to being active with my kids. I met with Dr. Macadam right after my first chemo treatment and she told me I was a candidate for either implants or tissue reconstruction. Depending on which one I chose, it would affect the timing of my radiation: With implants I would have radiation after surgery, with tissue reconstruction I would have radiation before surgery.
Why did I choose DIEP reconstruction?
At first I wanted to get back to my daily routine with my kids as soon after my surgery as possible. I had decided on only doing a unilateral mastectomy with an implant for the shortest amount of recovery time. The main issue I had with a double-mastectomy was that I still want to have kids and wanted to breastfeed. After a lot of discussion with other women who have been through the surgery, I decided that because I did not know the cause of my cancer that I would be safer to have a double-mastectomy and that this would allow me more peace of mind than a unilateral mastectomy. I then had to decide about the reconstruction. My husband asked me, “If the recovery time was the exact same for both procedures (implants or DIEP) which would I choose?” This was easy: DIEP. I would use my own tissue, not have to be replaced ever, would grow and shrink with my body size, DIEP breasts were natural looking, I would get a tummy-tuck at the same time, I get to keep my tummy muscles, and it was a one-time only procedure (no pumping or expanders). My husband pointed out that really, in the long run (the rest of my life), a month and half of recovery was not a lot.
I totally understand that the experience is different for every woman, and that not everyone can do the DIEP reconstruction, but for me it was the right choice.
Prior to the surgery:
I only had two meetings with Dr. Macadam prior to surgery. The first meeting she showed me photos of the procedures and talked about the pros and possible cons of each of the procedures. She also did some measurements and gave me some handouts. I was totally overwhelmed. By the second meeting I had a lot of questions for Dr. Macadam and she spent a lot of time with me addressing my concerns and answering all of my questions. Andrea gave me a form for a blood test and told me that she would contact me to get a CT scan on my abdomen. I completed chemotherapy and radiation and continued Herceptin treatments before surgery.
I got my CT scan the week before the surgery. Two days before the surgery I went in to VGH for a pre-admission clinic. I was able to talk to a nurse and an anestesioligist.
Day of surgery:
I checked in and was taken to the admission room. My husband came with me. The nurse came and took all my information and then Dr. Macadam came into the cubicle. She asked how I was doing and then took a Bic marker to my breasts and tummy to mark all the incision areas and where my veins were on my CT scan. Then my general surgeon came in and some students and fellows who would be observing the surgery. The anesthetist came and set up my IV and said he would be with me for the whole procedure. At 7:45 am I said goodbye to my husband and the nurse wheeled me to the OR on a bed. The procedure took 13 hours in total. Dr. Macadam called my husband and told him that everything went according to plan, things looked great, and it was a lot of work. I woke up in the recovery room to complete chaos. There were lights, people, and noise. They let my husband into the recovery room at about 10:00pm. They were checking my dressings and working on my drains when things started to get a little queasy for my husband who had to take some air while they moved me to the Burns, Plastics and Trauma Unit. I was put into my own super-heated room so that my tissue would take. I was so hot and sweaty and puffy that I stayed naked under the paper sheet. They also put leg compression sleeves on to reduce the risk of blood clots. I visited a bit more with my husband, who had to wear a gown and gloves every time he came into the room. The nurses explained the Patient Controlled morphine drip and that I would still wear oxygen for the night. Then everyone left me to sleep, but I could only get 5-10 minutes of sleep at a time because of the hallucinations and dreams from the morphine. Also the nurses would come and check on me every hour to check the flow to my breasts with a Doppler. As the night went on I started to feel some soreness and bruising. I was super sweaty and itchy from the morphine, but one of the nurses was excellent and took the leg pumps off and gave me a cool sponge bath and leg massage and powdered my legs before putting the pumps back on.
Day after surgery:
Dr. Macadam came to see me. She told me that everything went smoothly and that the the procedure was long because it was basically 3 in 1 operations (mastectomy, reconstruction, tummy tuck and breast reduction). She pushed on the sides of my breasts and I was very sore and swollen on the left side where they took the lymph nodes. Apparently this is normal. My stomach incision was also sore and tender. Dr. Macadam says everything looked great and was doing really well. She okayed me to start a liquid diet. The program for the day was bed rest and it was decided that tomorrow I would try to get up and walk to a chair.
All day I had regular visits from the nurses for checking my blood flow. I did not have much bandaging just a tensor under my breasts to hold them up and bandaging on my stomach and new belly button. I had 5 drains: two on the right side and 3 on the left side.
I am mostly sore around the stomach incision. It feels like muscle pain on my sides and bruising on my hips. My breasts are quite bruised on top and vey swollen.
Dr. Macadam came by again and said that everything looked good and that her fellow would be by the next day to check up on me.
I was able to eat a bit of soup and tea. And drink cold water and juice.
Day 2 post-surgery:
My general surgeon, Dr. Cheifetz came for a visit. She said her part of the surgery went well and she was able to take everything out as close to the skin as possible.
Dr. Macadam’s fellow visited. He said everything looks good. The plan for today is to sit up, stand and rest in a chair for a bit. I have to get moving a bit. I also have a breathing tool to encourage full, deep breaths.
I got my catheter and IV removed today.
Today was the worst day for pain. Lying down and cold sponge baths help. Eating is good. I am able to eat yogurt and an apple.
They are still checking my blood flow with the Doppler every hour.
Day 3:
The physiotherapist came by today and went through some exercises I can do: neck bends.
Dr. Macadam came by again and says: “It looks perfect, looks like it is all surviving.” She said she would bring me a special bra to hold everything in. She dopplered my flaps and said it was good to hear some flow after day 3. She told me day 3 is usually the turning point.
I still have pain in my underarm area from where the nerve was taken.
I was told that I MUST get up and walk today so that I reduce my risk of blood clots.
I had a couple of visitors and then the physiotherapist came to help me walk. I sat up and barfed. I moved to the commode and barfed. I peed and barfed. They gave me 4mg of Ondansetron by IV and I barfed. A cool cloth helped a bit but resting lying down is the best. I did not eat a lot today: some yogurt and an apple.
Day 4:
I had a rough morning. The fellow came to visit me and said that I HAVE to get up and walk to the toilet or I can’t go home tomorrow. I am so nauseas I can’t function. It feels like chemo again and I hate it. I can’t eat anything they bring me even though I can have solids now. None of the nausea meds seem to be working. The even tried 8mg of Ondansteron.
Gravol works, but totally knocks me out. I took a short walk across my room, barfed and then ate a bit of food. The fellow thinks it is the pain meds that are making me sick so he is going to change them today.
Dr. Macadam came by and brought me a new bra that. It is a compression bra that does up in the front. It is supposed to keep the swelling contained and the breasts in place. I have to wear it at night too. It looks nicer than the tensor and makes me a feel a bit normal again.
I took Dilaudid and Gravol and had a great nap. When I woke up I actually felt hungry and ate some food and had a milkshake. With the help of the physiotherapist I walked around the ward with a pillow clutched to my stomach. Later I walked to the nursing station by myself. They let me have breaks from the leg compressors and then finally just took them off. They also finally turned the heat down to a normal level. Things are looking up!
These are the drugs that they have me on:
Regular Tylenol
Dilaudid (4-6mg every 4 hours)
Vitamin C
Multivitamin
Aspirin
Heparin shots (in right arm-which is totally bruised now)
They always asked me what level my pain was at on a scale of 10 and I would say it varies from 4-6 every day. Not bad considering the major surgery I had.
Day 5:
Time to go home! After checking with Dr. Macadam, the nurses finally redid my dressings and removed drain #4 on the left side. They showed me and my husband how to empty the drains. I feel fairly good, but a bit sweaty and light headed from the pain meds.
My husband went and picked up my medications from the pharmacy and I got washed up and dressed. I had made sure to wear really easy clothes to put on to the hospital (yoga pants, really loose-necked shirt and slip on shoes). The ride in the wheelchair made me really nauseas and dizzy after not having moved around a lot over the past 5 days.
I took a Gravol and then we drove home. The fresh air was amazing. . I made it up to bed and had a gravol and a nap. While I was sleeping, my husband went and got me a commode from the Red Cross. Our bedroom is on the top floor and I would have to go downstairs to go to the bathroom, so this will be easier.
My husband emptied my drains every 12 hours and recorded how much liquid came out and the times I took my meds. I can eat normally now, but not very much.
I stayed in bed all the time. I did get up to pee in the commode a couple of times. As I was sleeping flat on my back at night (with pillows under my knees and arms) I woke up with a crushing pain n my chest and not breathing I had to get my husband to help me up and prop me up with pillows. I gasped for breath for about 10 minutes until I felt better. It was very scary, so now I am sleeping sitting up.
Day 6:
I feel well-rested after the incident with the breathing. My goal today is to have a bowel movement. I have been taking sodium ducosate twice a day to try and get things moving. I sat on the commode for a good half hour and was able, with difficulty, able to have a bowel movement. While I was on the commode the home nurse came by. She could not take out my drains because she needs a full 24 hours of data before she can do anything. She said she will come back tomorrow.
I was able to walk downstairs and sit in the living room and visit with my friends today.
Physically, it is still hard to manage the stairs and do lots of talking as I get winded. I had a sponge bath today, with help, which made me feel so much better.
Day 7:
I had a terrible sleep last night. It is hard to get comfortable with all the drains in. I had to transfer to a lounger chair to sleep, which was way more comfortable, but I still had to use 5 pillows to support my back and arms.
The nurse came today and took out three drains. She said everything looks god and dry under my dressings. It was such a relief to have them out! She bandaged me back up and left the one drain under my left arm (which was at 30 every time). She will call tomorrow to see if she should remove it.
I made it downstairs again and sat on the couch for a while. It feels good to get moving. My days are mainly spent laying in bed and looking at the computer.
The pain is really not as bad as I thought it would be.
I still have someone here every day to help me with day to day tasks and getting out of bed.
Day 8:
My appetite is slowly returning.
I was able to get up and have dinner with my family for Christmas Eve. I ate more than I have eaten in a long time
Day 9:
I had another poor sleep, but stayed in my bed all night. I didn’t take any pain meds last night but I took 2 Emtec this morning before the Christmas rush.
I was able to stay sitting or lying down in the living room all day. I took one break to rest upstairs but I didn’t nap. I find it hard to get comfortable and I don’t want to compromise my sleep at night.
I was able to get a new shirt on today. The best type are ones that button up the front or are very loose around the neck. I also wear yoga pants or PJ bottoms to protect my stomach incision
Day 10 :
I had a great sleep last night, probably because I was able to lie flatter on my back and because the incision on my stomach is feeling a bit better.
I am now able to go downstairs to the washroom and stay there all day. I have to remind myself not to pick up the kids or to do any housework.
I am eating full-sized meals now.
I felt really good all day but had a swollen, sore arm on my left side by the night. I had to lie down and raise the arm and take one Emtec.
Day 11:
I had my first shower to day, which felt amazing. I took off all my dressings before. They were all dry but there had been a lot of drainage on the left side.
After my shower I lay in bed without a bra for a couple of hours. I called the homecare nurse to see if they would come re-dress me. She finally got back and said that I could do the dressing myself.
I only took one Emtec at night again because I was swollen and sore.
Day 12:
Today was my first time out of the house since surgery. It felt good to get fresh air and stretch my back. Walking feels fine, but I am still really tight in my tummy, especially along the right side of my pubic bone (it feels like a string pulling through there).
I had my first follow-up appointment with Dr. Macadam. She and the fellow took off my steri-strips and a lot of my skin came with them. I didn’t feel it at all except for when they removed some of the bandages. They said there was quite a bit of blistering, but they had seen worse and mine wasn’t too bad. This type of blistering is to be expected with this type of surgery (a reduction pattern mastectomy). They also said that it wasn’t too good to have the blisters on my tummy so I need to keep them moist with Polysporin. They redressed all my wounds with Telfa and paper tape and some steri-strips along the incision on my tummy. Dr. Macadam said that everything should heal in ten days and that I should get the nurse to change my dressings every day until then. She also said that everything looks good and that my breasts are a good shape. This was reassuring to hear.
I have to really take it easy: no cleaning, making the bed, or lifting the kids. If I have to get up I have to roll onto my side and swing my legs over the side of the bed and push up.
Week 3:
I made sure to take it really easy for a couple of days so that my tummy wouldn’t pooch. My sleeps still are terrible, even though I can sleep on my side now. I always wake up for a couple of hours with a really sore back and then I wake up really early.
I am still walking hunched over a bit. I had to walk back to the car a couple of blocks, so I was a bit winded. The hardest part about walking is the tummy incision is so tight. I have to walk bent over which hurts my back.
My muscles ache to move and I stretch out more. I want to do things and have to keep reminding myself to slow down. If I do too much I find I get light-headed and have to rest. I went for my first walk at the park. I still have to go slow and had to sit for a awhile so I wasn’t straining my back. I was really tired after this.
Week 4:
My tummy incision feels a lot better and I wans tot keep flexing and stretching my muscles. I am able to sleep flat and on my right side now, but still wake up with back pain.
I saw my general surgeon for the first time since surgery. The clinic nurse and fellow came in to check me out because I am “unique case.” They don’t get to see many DIEP patients. She was not surprised to see the skin necrosis because with reduction incisions the blood has to flow all the way from the top of my breast to the bottom and the blood flow is cut off for so long. She said that everything looks good and that I have really nice shaped breasts.
I had 2 sleeps without back pain! I am only taking Tylenol at night. It also helps that I can walk a lot straighter. There is A LOT less pain on my left side and just a bit of sensitivity on the right side under my breast. I am still numb on my left side under my armpit and against the breast.
Week 5:
I am able to move around and do everything now, just not pick up heavy things. My tummy incision feels a lot better, not as tight but numb. I no longer have dressings on my tummy.
I had a follow-up appointment with my radiation oncologist. He said that everything looks good. He said my pathology report was good. He is happy with how things went with radiation and that I seem to have breezed through the process. I only have to follow-up with him if I have rib or chest pain or skin problems over the next few months. He reassured me that there is no sign of cancer anywhere else in my body and that, like anyone else, I could get cancer again but I need to move on and live my life. Because I have tissue reconstruction he explained that I will no longer get mammograms or scans, but I will just get manual tests.
I have almost no pain anymore, just a numbness and tightness on my left side. I can only lift my left arm to my shoulder and then it pulls in my armpit and across my chest.
I saw Dr. Macadam again. She looked at everything and says my tummy incision looks amazing and the blisters are gone. She was hoping that the incisions on my breasts would have healed more. She is mostly worried about the bottom of the right side. She has seen wounds like mine heal before, so she will give me another week and then will consider a skin graft if I haven’t healed. She would take the tissue from my side, where it bulges over my tummy incision. She wants me to change the dressings every day and use Flamazine to clean up the dead tissue. She also checked the lump on my left side and is pretty sure it is fluid buildup because it has some “give”. She wants me to massage it with pressure a couple of times a day. I asked if I could start driving and she said I could if I felt like it, but really it has to do with how I could react in an emergency situation. She also confirmed that on Thursday it will have been 4 weeks since surgery and I can eat chocolate and have caffeine and red wine again.
3-month update:
I have been head down trying to heal and get on with life. I am back to cooking, driving, parenting and all of the other fun life adventures. I started driving again at 5 ½ weeks post surgery. I am finally getting back to being able to walk more than a block at a time and can do long walks and run after my kids, but am not very good at heavy exercise. I did a study at UBC, and they tested my lung and heart function with exercise: Apparently, I am at 88% of normal, which isn’t too bad as I am so soon after treatment.
There is a lot of healing still to do. I am still getting Herceptin injections every 3 weeks. I only have 4 more treatments to go and will be done at the end of May. My left breast is totally healed and I just have a red, indented scar there now. The wound on my right breast is about 1/8 of the size it was. The nurse is guessing another week and it will be all healed. It had actually all healed, but then the skin is so sensitive that it tore again while I was toweling off after a shower, so I have to wait for it to close again. I am really looking forward to being bandage-free and being able to bathe and swim again. I did not get skin grafts, as Dr. M thought my breasts were healing okay, just very slowly. She will work on the scar on my right side when she does the follow-up surgery. Once I am healed and done all of my Herceptin treatments I will have the second phase of reconstructive surgery: It will be a day surgery and I will have some liposuction done on my left breast and on my sides and have a bit of tightening done on my right breast. Dr. M has decided not to do my nipples at the same time because she doesn’t want them to collapse. It will be another couple of months before I get my nipples made.
Some days it is really hard because I still have nipple-less, bandaged breasts that every medical person I see wants to look at. I know that the reconstruction is secondary to the actual surgery being successful at removing my cancer, and I know I will get there, but it has been a long journey.
I have also been working very hard at getting the mobility and strength back into my arm and my core. I found out that I had auxillary web syndrome. Basically this is when the lymphatic channel in the arm chords and pulls through the entire arm and armpit. My physio has been massaging and stretching it out and it is almost gone. I have a had a really sore back and tailbone from how I have been sitting and standing and protecting my incisions so I have been working on that with my physio.
Would I still recommend DIEP surgery?
After reading my experience after the DIEP surgery, and seeing all the healing that I have done, people ask me if I would still recommend the DIEP surgery, and I would answer: Absolutely.
My breasts look real and are a great shape. They fit my body (they are the right size and shape). I know that the scars and wounds will go away with time and once I have my nipples, they will look complete. I am glad that aside from the wound healing, I had no complications with infection or anything. I am so happy that I was able to wake up from surgery and wear a bra and clothes and not have to look different from other women. I am also happy with my breast reduction: my breasts look perkier and rounder, and I hope will help me heal from the back problems I have always had. I am also very happy with my tummy-reduction: I look skinnier, but still have my stomach muscles. I am looking forward to being able to build my core up again.
When I compare this surgery to the other options I had, I know I made the right decision: I do not have to wait for my second surgery as with implants. I do not have to maintain the breasts in any way (well, other than the wound dressings). I look and feel real and do not have to have any follow-up surgeries after my initial ones. I still have my stomach muscle, as compared to the TRAM flap. Overall, the recovery was fine considering the surgery. I was up and about as soon as I got home, I felt a LOT better after 4 weeks, and was back to normal activity by 6 weeks post-surgery. As a young woman, being able to get back to life and work as soon as possible has been important, but so has having a body shape that I like and feels real.
Dr. Macadam has been great to work with: She answers all my questions, she has been very accessible by appointment and email, and she has done a great job on my breasts. She takes pride in her work and is able to balance her professionalism with a genuine caring attitude for her patient. Over and over, everyone I have seen has told me that Dr Macadam is very qualified.