BILATERAL MASTECTOMY WITH TRAM FLAP RECONSTRICTION

PROPHYLACTIC BILATERAL MASTECTOMY

I am an ovarian cancer survivor.  I reacted to the news of a diagnosis of cancer like most people do; I freaked out, believed I was at the end of my life, would never see my daughters marry or live to see my grandchildren. As a health care professional, I found that I was totally ignorant about cancer.  This disease was something I avoided like the plague.   If anyone had told me that I would actively seek a prophylactic bilateral mastectomy one year after finishing chemotherapy, I would have been incredulous.  At the end of chemotherapy I requested a genetic screening for Bracca I and Bracca II gene.¹  There is familial breast cancer for both paternal  grandparents and   prostate cancer with my father.  During and after the experience, there were things  I wish I had known beforehand. I have constructed  a description of what I experienced and how I would plan ahead for the things that were important to me.  I would recommend no less than 10 days to make these preparations.

THE OUTCOME – My body image IMPROVED after surgery.   I looked better.  My “breasts” are firmer , but  at  first felt  noticeably heavier.  They do  have natural movement and feel.  They are the  same size with better lift, separation and shape.   Now that I have completed nipple surgery and tattoos (to replace the missing color of the areola tissue that surrounds the nipple), my “breasts” look great.  My husband is very pleased and surprised.  I still have numbness in the upper part of the graft and in the nipple, but the skin below the breast incisions has normal sensitivity.   A year later, I am regaining some sensation in the numb areas of the breast.   If you have chemo therapy or radiation, in the near future, you may decide to wait to complete the two procedures for finishing touches. This boost to your appearance may become a reward for the end of the process as it felt to me.  I can say that the mastectomies and TRAM flap were far less debilitating than I expected and certainly far easier to tolerate than the extensive abdominal hysterectomy and bowel resection I had experienced a year before.  One complication that my plastic surgeon discovered during the initial surgery was the presence of two, previously undetected hernias.  He repaired those with a permanent synthetic mesh so the risk of contracting a hernia is now minimized.

PAYING FOR THE SURGERY -  I was very concerned about the expense of a plastic reconstruction.   I learned by reading my insurance benefit booklet that there is a federal law mandate to insurance companies who cover the expenses for a mastectomy that they also must also provide coverage for the expenses of reconstruction and complications related to mastectomy.²  My nurse practitioner friend, who is a cancer specialist,  told me about the TRAM flap surgery, but she did not know about the law.  The procedure for TRAM Flap surgery is actually three separate procedures which can be spaced over time or as close as one to two months apart. They are all billed separately to insurance and are not considered  a “package deal” by insurance providers or by the surgeon.  If I were to do this again, I would have all three surgeries within the same calendar year.  Since I waited until January for the nipple construction, I ended up paying a second insurance deductable.

THREE PROCEDURES FOR COMPLETE TRAM FLAP RECONSTRUCTION    Individuals vary in their decisions to have the second two  procedures.  I had all three, but I waited three months before having the nipple reconstruction and nearly 10 months later for the areola  tattoos.    A physician friend told me to  GOOGLE  ”TRAM flap”³  and I immediately had pictures and descriptions of the surgical procedure. My outcome is BETTER than what I saw on the internet.  

1)     Bilateral mastectomy with TRAM FLAP and incidental tummy tuck– is the first, longest and most complicated.  Allow one week of mostly rest and sleep  and four weeks before returning to work.  The surgery usually takes about five hours with a hospital stay of three nights with discharge on the third morning. More about pain management later.  You will not wear a bra (or need to) for about three months afterward. You will have the architectural form of breasts, without  nipples.  There will be four suture or stitch lines: one transverse across the line of the nipple for each breast and extending out approximately four inches on either side of the nipple, one where your navel has been reconstructed after the tummy tuck  and one across the entire lower abdomen, curved upward on both ends (like a faint smile) nearly to the waist.  These incisions are closed very delicately by the plastic surgeon with what looked to me like an invisible  “blanket stitch” (if you are a sewer) done with dissolving suture material.

2)     Nipple reconstruction – is second with this being done in an out-patient surgical center.  Plan on one hour before surgery, one hour of surgery and one hour recovery.  Sleep at home the rest of the day.  Someone needs to take you to and from the procedure and stay with you in the house for at least 12 hours afterward.  There is no need to lose more than one or two  days for this.  If you work full time, try to plan to have this on a Friday so you can go back to work on Monday.  Pain was minimal/absent for me.  You will wear a surgical bra for this and will see the surgeon a week after surgery.

3)     Bilateral nipple tattoos are done in the plastic surgeon’s office and takes about an hour – pain free/minimal discomfort. Treat this like you would a dentist appointment.

PREPARATIONS  BEFORE SURGERY – In  addition to general medical clearance from your primary care physician,  I made appointments with a general surgeon and plastic surgeon specializing in breast reconstruction.   Not everyone is a candidate for  TRAM Flap reconstruction.  You and your surgeons make that decision based on the extent of the cancer and your over all condition.

1.   The plastic surgeon I chose has a reputation and practice focusing on breast reconstruction .  It is very important to find a plastic surgeon that you connect with because you will have many questions and your surgeon needs to be willing to give you the time to answer them. He should be a patient, friendly advisor that you can talk to easily.   I chose Dr Farhad Rafizadeh  because I knew of his reputation and  years of experience in this specialty of specialties.  I had the surgery at Morristown Memorial Hospital for insurance reasons, but importantly, I had been there for cancer treatment and surgery and I trust the institution and the nursing and ancillary staff,

2.   I had one visit with the general surgeon who operates cooperatively with Dr. Rafizadeh in this combination surgery.  He performed  simple mastectomies with a “skin-sparing” procedure that enabled the grafts to be very natural in appearance.

3.  If you have a particular anesthesiologist that you want to care for you during surgery, tell the surgeon’s office assistant his name and he will be reserved for you.  Most hospitals have many anesthesiologists working in the anesthesia department.  I asked for the same anesthesiologist who did the previous cancer surgery because my recovery was so uncomplicated.  He was instrumental in providing me with fantastic pain management.

3.  Dr Rafizadeh sent me for a doppler study  to assure that the my arteries and veins would be able to supply blood to the newly grafted breasts enabling the growth and adherence  of the living tissue that is used to create the new breasts. 

4.  About three days before surgery, I went for the “pre admission testing” which included a chest x-ray, EKG and standard blood work.  This took about two hours to complete.

5.   I also had a pedicure, manicure and my usual hair grooming at the beauticians   because it makes me feel good and my feet are on display as a patient.  You don’t have to pamper yourself, but why not? I also spent at least three hours a week doing exercises to strengthen my arms and abdominal muscles.  I used an upper body  and  lower body aerobic tapes both with free-weights sections at home.  If you belong to a gym, great.  Ask them to help you prepare.  If you could do a sit up from lying flat before the surgery, you will lose that ability for several months. You will need to learn a new way of getting off the floor and out of bed.   The TRAM flap uses the large abdominal rectus muscle known as your “six-pack” to form a shelf that supports the new grafts and houses the blood vessels your grafts will depend on.  After surgery, your lateral and lower abdominal muscles will need to develop so that you can do all the activities you are used to.  Now after one year, I can sit straight up in bed using my lateral (oblique) abdominal muscles. 

6.  If you have very young children with many needs, arrange as much baby sitting support as you can.  Spend time with them reading quietly or watching them from a position of comfort.  You should not be in a position where you have to lift them up.  Sit down and have someone hand the child to you or crawl onto the couch with you. 

7. I also cleaned my house thoroughly because sitting around watching T.V. or reading is all you will be doing for a while. Housework means arm movement and you want to avoid arm movement especially stretching  and reaching.   NO HOUSEWORK for two to three weeks after surgery.  Its never too soon to talk to your  husband, children and or friends about what they can do to help with this or  hire a teenager or service.  Even if you are very particular, try not to criticize them for doing their best.  It will all be there for you to correct later. Your family and friends want to do something to help you.  Let them.

8.  Go grocery shopping and make sure you have a one week supply of one-dish meals  that can be taken from the freezer and  heated in the microwave or  oven by your family so you don’t have to worry about feeding them. Teach the kids how to make a salad.   If you belong to a church or local club, see if your social contacts there can help you with meals once or twice a week for about two weeks.  Your friends want to help you .  Give them a chance to do this for you.  Make sure you have canned or frozen soup for yourself, yoghurt, pudding, eggs or anything else that you like when you don’t feel like eating much. 

9.  On the day before surgery, I saw Dr Rafizadeh in his office where he drew the incision lines on my existing breasts and belly so that the general surgeon had an actual pattern to follow.  After this, you can’t shower because the marks would wash off.  Scrub well, shave whatever and do a double wash of your hair before you see him on this final pre operative visit.  If you take a bath, turn on the shower to rinse all soap residue, shedded skin cells and hair off.  No deodorant, creams, hair treatments or lotions on your skin after bathing. Oils and lotions are ways that bacteria can stick to your skin increasing the possibility of a post operative infection. You don’t want chemicals getting into your incisions.  You won’t be able to have a full bath or shower for a couple of weeks after surgery.

SPECIAL PREPARATIONS – Plan to be inactive for at least one week after surgery and about four weeks before returning to work. 

1. Wear dresses, blouses, shirts or sweaters that button down the front.  This facilitates easy access to the breast and abdominal  area for exams before and after surgery. It is also important to restrict arm movement after surgery.  Pull over clothing requires too much arm movement.  More about arm movement later.  Dr Rafizadeh may tell you that he wants you to wear a “high-waisted girdle” for a few weeks after surgery.  I found a very comfortable one-piece, thigh long style with soft elastic at the local corset shop that I continue to wear because it makes me look good and is much more comfortable that standard panty hose with “control top”.

2. If you are going to wear pants, try to find some that have an adjustable waist.  Draw string pants work the best.  I had to cut the elastic in the sweat suits I bought because it was too tight on my abdominal incision.  With the TRAM flap, you will also have an “incidental tummy tuck”. I found that the ends of this long transverse incision were very sensitive to pressure  for several months after surgery. I also noticed an adjustment in my natural waistline.   

3. Practice moving around in bed using your arms and legs only.  To get out of bed, roll onto your side near the edge of the bed and pull your legs up in fetal position.  Use the hand and arm on the top side to push your self up to s sitting position. Simultaneously, stick your legs over the edge of the bed. Use the momentum of the weight of your legs as they swing downward  to help your free arm push you into a sitting position.  Once you push the shoulder that is against the bed up a bit, you can use that arm to assist also.  If you have back problems, you already know how to do this.  If not, practice now because you will be doing this for the coming months after surgery.  I did not have trouble coming to a standing straight position.  I did notice some strange balance problems.   When I lifted my leg up high, I nearly fell over backward.  You don’t appreciate the work of the abdominal rectus muscle until it is gone!  

4. If you spend any time at home alone during your recovery, you will want to have some things close within your reach.  As I mentioned, minimal arm movement is essential in recovery.  Place dishes to eat and drink on the counter so you do not have to reach for them.  The same for clothing and anything else you use all the time.

5. The evening before surgery, try to relax and eat well at dinner.  You will probably be asked to fast after midnight so I recommend that you have a couple of large glasses of water just before bed and a high protein, complex carbohydrate snack of some kind.  I was scheduled to be at the hospital at 11 AM, but surgery was not until 1 PM and I was pretty hungry and thirsty.  After surgery, the morphine drip helped to curb my appetite so I did not feel the need to eat then.

THE DAY OF SURGERY

1.  You will receive instructions to report to the surgical access department of the hospital at a specific time.  Usually at least two hours before surgery is scheduled to begin.  Here your paperwork, forwarded to them by the pre admission testing center, will be reviewed. If you have not signed a consent for any procedure, you will be asked to do this there.  If the surgeon wants additional blood testing , samples will be taken there.

2.  You will be escorted to the “holding area” where you will undress and don a hospital gown, surgical cap and booties.  An intravenous line will be started in your arm.  After you are ready, a family member can come and wait there with you.

3.  There is another procedure before you receive anesthesia.  This is a procedure done in the X-ray department (radiology so that the lymph nodes in the area around the breast can be illuminated by a radiopaque dye(a substance that shows up on the x-ray and guides the surgeon to the lymph nodes).  During mastectomy, lymph nodes are biopsied or removed (dissected) to test for cancer cells.  One node in particular, the sentinel node, is of particular interest to the surgeon.  The procedure goes like this:  A.) The radiologist tells you what will happen.  B. He injects a needle into the breast near the nipple (not the IV) in several spots on both sides.  It was described to me as a “bee sting”.  I did not find it that painful, but a friend of mine felt it was quite uncomfortable.  This takes about three or four minutes. 3) Then you are alone for a few minutes to give the dye a chance to move into the nodes. 4)  X-rays are taken of the breasts and checked for clarity.  The entire procedure takes about 30 minutes, then you are returned to the holding area.  You can ask to have the family member who is with you accompany you to radiology so you have someone to talk to while you wait

4.  The anesthesiologist will see you and discuss anesthesia with you.  This is an important conversation.  I was very concerned about post operative pain.  I discussed this with the anesthesiologist  he decided to give me an epidural (spinal) anesthesia as well as  general anesthesia (the kind you inhale) .     I told him I was afraid of having a needle stuck in my back.  He promised me that I would have no memory of this needle which was great.  The epidural anesthesia was continued after the surgery throughout the next day .  This kept me pain-free. 

5.  When I was wheeled to the operating room, I was transferred onto the surgical table.  Because I was having the epidural, I sat on the side of the table with my feet dangling and bent forward so that the anesthesiologist  could access my spine.  Before doing the spinal stick, he injected something into my IV that created a mild sleep state and amnesia.  He also gave me a powerful, long acting  anti-nausea drug  so that I would not feel nauseous when I awakened.  Both worked very well for me.  That is the last thing I remember until I woke up in the operating room once the surgery was finished.

6.   Most people wake up in the recovery room, but because I had the spinal anesthetic, the general anesthesia was not given to me for as long a time.  When I woke up, I was awake enough that I recognized Dr Rafizadeh.  Before I knew it, the breathing tube was removed  from my throat and I was on the way to the recovery room.

7.  I arrived on the nursing unit at about seven thirty in the evening.  The nurses had both of my arms elevated on pillows.  This turned out to be a most comfortable position for me and I slept on my back like that all night. I used this positioning at home as well any time I felt “achy”. I was also given a morphine IV drip that I controlled myself with a hand held button.  I only used it about three times all night because the epidural anesthesia kept me so comfortable. 

MOVING AROUND – THE NEXT CHALLENGE

I did not know this at the time, but soon learned that plastic surgery grafts heal differently than tissues in other types of surgery. In the past, surgeons always advocated as much walking and stretching after surgery as possible.  That was my belief.  This is WRONG for the TRAM flap surgery. 

            1.  Restrict arm movements – the more you move your arms, the more difficult it is  for the grafts to grow against the chest wall and  become permanently attached.  Excessive movements increased the serous fluid that will come out of your drains.  I had four drains when I woke up.  If serous fluid builds up to become a seroma, it will require drainage, a complication you want to avoid.  Although this has not been confirmed by the doctor, I feel that it also affects the way the suture line heals.  These sutures lines are done very carefully to leave minimal scaring.  By waving and stretching your arms, you put pressure on the incision lines.  This sends a message of pain to your consciousness, but if you are stubborn, like I was, I took pain medication so I could be more active.  That was wrong.  The only area where the scar is not rapidly disappearing is the four inch section on my right breast extending from the nipple to the right arm pit.  I am right handed and I was not compliant with the arm movement restriction.  I stubbornly did a lot of reaching and insisted on being self sufficient which I should and could have avoided.  If you have pain while you are sitting still, take pain medication so that you are pain free sitting still.

            2.   I had been told that I would be expected to dangle my legs at the side of the bed on the first morning after surgery.  Since I practiced the side/roll-arm boost maneuver, I was able to do this with no problem.   I wanted to get out of bed as soon as possible, but my right leg was numb to the knee  on one side from the epidural analgesia.  I could not get from the bed to the chair by myself.  The nurses were able to support my legs enough so that I could stand on them to get to the chair at the bedside.  I sat up all day and was very comfortable with my arms propped on pillows.  Toward the end of the first day, my epidural catheter was removed.  The feeling in my legs returned in a couple of hours and I got up and walked with assistance.  From that point on, I was on oral pain medication.

            3. Toileting -   While the epidural catheter was in place, an IV and  a urinary catheter were also in place. I had no need to use the bathroom except to wash up.  Once the epidural was removed, the IV and the catheter came out as well.  At this point I still had drains in the incisions in place.

ABOUT THE DRAINS -  I had a drain on the axilla side (arm pit side) of each breast graft and drains at each end (right and left) of the abdominal incision.  Drains require care and while you are in the hospital, the nurses will teach you how to empty and measure the bloody, serous liquid. “Milking” the drains is something you will need to learn to do at home.  It also produces a pinching sensation as the “milking” procedure creates a vacuum inside the  wound  Remember, the more you move your arms, the more drainage you will have.  Mine were in for a full week after surgery and I managed them at home.  My friend went home with no drains.  The oncology clinical nurse specialist provided me with a “drain belt”.  This was a soft elastic belt with small Velcro loops that I was able to use to secure the drains while I moved around in the hospital and at home.  It kept all the drains at waist level so I could pull my shirt down over them and they were not in the way and not obvious.  Once the output from each drain is less than 50 cc (about 2 ounces) in twenty-four hours, the drains can come out.  If you go home with drains, you will need to have a sheet of paper with the drains labeled so that you can keep track of the drainage and report it to your surgeon.  Before you leave the hospital, ask the nurses to give you a small, disposable. sterile measuring container to take home.  Removing the drains  was painless.  Dr Rafizadeh is very gentle and took extra time to carefully remove them very slowly.  This also prevented the grafts from being disturbed by a sudden movement.  

MANAGING PAIN – will be different for every individual. You know yourself by now.  Some women find that they can tolerate this discomfort pretty well.  Others report that they are absolutely miserable.  The only accurate measure of pain is what you feel.  No one can tell you whether you are having pain.  

            1.  You will have several areas of complete numbness after surgery.  Nerves are severed between the skin and connective tissue from the bottom of your chest bone (sternum) to the top of abdominal suture line.  This is because the plastic surgeon creates a tunnel that is about five inches wide up the middle of your abdomen.  Through this tunnel passes the adipose grafts and the abdominal rectus muscle that will become your new breasts.  On the breasts, the numbness extends upward from the suture line for approximately two inches and to the sides almost to the arm pits. 

            2. You will receive a prescription for oral pain medication when you are discharged.  Take these as needed to reduce the perception of pain while resting and just before walking, bathing and dressing changes. Do not use pain medication so you can be more active.  Use pain as a guide to too much activity. 

            3. Use non analgesic methods to manage pain as much as possible.  I found that the “aching” I felt in my breasts relieved by sitting in a big arm chair or recliner with my feel elevated and my arms supported on pillows.  This took the pressure off the grafts and suture lines.  This can also be used to extend the time between doses of medication.  If there is another activity that usually makes you comfortable or gives a pleasurable sensation, use it. I like having my shoulders, neck,  scalp, hands and feet massaged  (another reason for a pedicure).  I also like a heating pad on my lower back. 

            4.  Use Tylenol as a supplement instead of narcotic analgesia. I was not a fan of Tylenol before this, but my attitude toward it has changed. It gave me substantial relief and does not cause drowsiness.

            5.  Try to isolate the location of the pain and identify what actions trigger the pain.  Avoid those actions.  

            6. Know that the discomfort will be less  with each day.  After one week, I used   the narcotic pain medication at bedtime pretty much.

DRESSING CHANGES. – Anyone who helps you at home with this must be dedicated to helping you prevent infection.  Keeping both your hands and those of anyone helping you scrupulously clean is mandatory.  Wash with soap and water or keep a “hand sanitizer” lotion close by.  Clean hands  after using the toilet every time, after eating, after using the telephone or touching a pet or handling dirty laundry or dirty dishes or wiping a child’s nose. 

Just before you go home the plastic surgeon will visit and change all of the dressings.  I had some pesky tape blisters under the satin tape that were more uncomfortable for me than the suture lines.  One of the nurses used a gel type dressing over them that was soothing.  When I got home, I replaced the gel dressing on the blisters with special Bandaid product called “Advanced Healing Dressing” that are available at the grocery store or pharmacy. Once these go on, they act like a second skin,  and accelerate healing, but should be left unchanged for at least three days.  I kept the dressings on that covered the suture lines until my first visit with the surgeon.  I was able to change my dressings without assistance, but you may want to have someone help you.  The point at which the drains enter the incision should be kept covered while they are in place to avoid infection.  There is a special gauze pad called a “drain sponge” that is made for this purpose.  Ask the nurses at the hospital to show them to you and give you enough for two- three dressing changes.  The dressings do not need to be changed everyday.  Change if they get wet from washing your self or if there is drainage on them that makes them uncomfortable.   Under the dressings, the suture lines are covered with adhesive strips called “steri strips”.  There is no need to pull these off.  They will eventually loosen painlessly and practically fall off.  

BATHING – The safest way to feel clean is to fill your clean (disinfect with chlorine bleach or a bathroom cleanser containing chlorine bleach) bath tub with about 3-4 inches of the warmest water you can stand.  Sit in the tub and sponge yourself with soap and water.  You will feel refreshed and much cleaner that if you try to wash at the sink.  Keep your dressing clean and dry.  Change them if they become wet if you do this with the drains in be sure to keep them dry.  You can use plastic wrap over the dressing and drains to protect them.   My husband helped me wash my hair every other day by bending over the kitchen sink. 

^1.  These genes are known to carry a high risk (as high as 85%) of developing breast cancer before the age of 65.  

^2.  The Women’s Health and Cancer Rights Act of 1998 (WHCRA).  HIPPA Insurance reform.  Centers for Medicare and Medicaid.  See this web site for details http://www.cms.hhs.gov/hipaa.hipaa1/content/whcra.asp    Most group or self insured plans cover mastectomy so the law applies.  Your State insurance department can find out if WHCRA will apply to your coverage if you are NOT in a self-insured or group plan.

^3. You can get to GOOGLE on the internet by typing “google.com” on your internet search engine.  That will take you to the home page for GOOGLE where there is a search box.  Type in “TRAM FLAP”  and hit the enter button.  This takes you to anumber of helpful sites that provide pictures and personal stories from other survivors.