The BFFL Co Guide to Mastectomy

Following are instructions and tips compiled over the past several years to help women get through mastectomy or other breast cancer surgery. Please read them carefully from beginning to end. This was the “tip sheet” that led to the launch of BFFL Co’s premier product, the Breast BFFLBag®

I. Get Organized

imppapers1. clear plastic folder, like the one included in the BFFLBag®, is vital for keeping your pre-op (before surgery) and post-op (after surgery) instructions, physician information, appointment cards, and notes together and easily accessible. Make sure to ask for the following and include it in your folder:

a)    Printouts and copies of all of your medical information (such insurance information, list of doctors, prior hospitalizations and medication list)

b)    Date, phone number and name of physician, nurse and/or administrators who book your appointments.

c)    Copies of all your diagnostic test results, which you should take with you for all appointments. This includes pre-op tests (EKG, blood tests, Chest X-ray, Mammograms, ultrasounds, biopsy results) from outside hospitals.

2. Have as many post-op prescriptions written and filled ahead of time as possible, so that you have them when you leave the hospital.

3. If you tend to get nauseated from anesthesia or pain medication, mention this to your physician, surgeon and anesthesiologist before surgery.  If you are extremely nervous, you can also ask for a sedative for the night before surgery to help you sleep.

Hair dresser applying rollers 34. Have your hair done (cut, colored, blown-dry or whatever you normally do) the day before surgery or as close to your surgery day as possible. Most likely you won’t be allowed to shower, blow-dry or style your hair for a few days because you can’t lift your arms. If you get your nails done, skip the polish, because you probably won’t be able to wear it in the operating room.  Shave or wax your legs and underarms, if necessary, before your surgery, because you won’t be able to lift your arms or reach down to your legs for a while.

5. If you work, you will need to inform your employer that you will be on medical leave for at least 2 weeks.  You might feel up to going back earlier, but it’s best to give yourself a buffer.

6. Make sure you’ve discussed payments and coverage with your health insurer before your surgery. Get all pre-authorizations in writing, and make sure you are aware of any out-of-pocket costs you will have to pay. There is sometimes a difference between what you are billed for and what your insurance will pay, and you should be prepared ahead of time to avoid surprises. Also, if you have a health care flex spending account that you can use for deductibles, transportation, parking, and other non-covered medical expenses, make sure you keep all necessary receipts in your handy clear folder.

7. Get your house in order – literally. Pay bills, do your financial chores, get the laundry done, prepare and freeze microwave meals, and have help lined up for yourself, your house and kids. Move things from high shelves in your kitchen to counter height, or get an arm extender/grabber (available on the BFFL Co website).  Do any necessary heavy cleaning before your surgery, because pushing a vacuum cleaning or changing sheets will not be possible for quite a while afterward

8. Go shopping. Make sure you have several days’ worth of groceries for your family. Stock up on crackers, broth based soups (not creamy) and jello.  These are all easy to digest the first few days at home. Get some bendable straws; it makes it easier to drink.

quitsmoking9. Stop Smoking. Patients who smoke and undergo surgery have an increased risk of heart and lung complications, including problems related to general anesthesia given during surgery. In addition, smoking makes it more difficult for the surgical wound to heal and may increase the risk of an infection. Your doctor may recommend that you stop smoking two weeks before surgery to avoid any complications.

noaspirin10. Stop taking medications and supplements that may interfere with clotting, the natural coagulation of your blood that keeps you from bleeding to death.  You should always discuss this with your physician first, but aspirin, ibuprofen, herbal medications, diet pills and high doses of vitamin E can be problematic. Many busy women who don’t always have time to eat as nutritiously as they like choose to take supplements. If you fall into that category, here are some that your doctor might recommend for you before your surgery:

Vitamin C: 1000mg tablets; one tablet once daily for one week before and one week after surgery;

Multi Vitamin (one tablet) and Zinc 50 mg: one tablet once daily for one week before and one week after surgery.

Arnica Forte: to help minimize postoperative bruisinging and swelling. There is little medical evidence, but many women swear by it. Ask your MD if it is okay: Arnica Forte (Arnica and Bromelain): two capsules daily for 7 days, beginning one day prior to surgery.

11. Stop use of alcohol and controlled substances, at least a week before surgery. Discuss this with your doctor prior to surgery. Withholding information about your drug and alcohol habits from your surgeon, who is bound by doctor-patient confidentiality, could be life-threatening.

12. Make a list of things you’ll need for the hospital (see section III) and start packing.

II. Understand What’s Going On

Listed below are some terms and brief definitions to help you navigate pre-op diagnostic testing and medical clearance. 

mammo11. Mammograms: X-rays that are used to detect abnormalities in the breast tissue.  Mammography can be recorded on traditional film (big plastic sheets) or directly uploaded into a computer (digital image). There are several types of mammograms now and you might be confused or asked by friends “did you have tomo-synthesis or 3D mammography or digital mammography?”  Don’t become worried that you did not have the most sophisticated or latest technique.  Ask your physician to tell you exactly what you had done and write it down.

2. Ultrasound Imaging: High frequency sound waves are used to detect masses or abnormalities in the breast, often in conjunction with, or as follow up to, a mammogram.  For some women with dense breasts, this is the only way their doctors can get an accurate look at their breast tissue.

breastmri3. Breast MRI – This imaging technique uses sophisticated magnets to look at breast tissue.  The patient lies on her stomach and her breasts are placed through an opening in the table. The resulting scans are used as a baseline, and to rule out any worrisome areas before surgery.  The technicians will most likely inject the patient with a contrast dye (to help create clearer images) before or during the procedure, after receiving some medication to ensure there is no allergy to the contrast dye. It’s usually cold and noisy in the MRI room. Some MRI machines are like long, skinny tunnels, while others are more spacious and open. Bring ear plugs, or the MRI center may have headphones with music. Don’t be afraid to ask for a sedative if you are nervous or tend to get claustrophobic, since remaining still is crucial for accuracy.

4. EKG – An electrocardiogram checks your heart rhythms.  Little electrodes are attached via suction cups to spots on your chest and arms (no punctures or injections), and the machine measures and records the results on a paper scroll – it’s a painless and very short procedure.

5. Chest X-Ray – A standard painless chest x-ray is done to rule out any pulmonary (lung) disease or infection prior to surgery.

bloodvialsmall6. Blood tests – A doctor, nurse or specialized “phlebotomist” (blood drawer) will insert a small butterfly needle into a vein in your arm and fill a few tubes of blood. If you have had a lymph node dissection (removal of one or more of your lymph nodes for testing) in the past, avoid having  that arm.  Physicians look at your blood chemistries to determine your general health and look at your actual blood cell counts to make sure that your blood is clotting properly, and that you are not anemic (low in red blood cell count). The tests are important predictors of your risk of infection, and of how you will heal and clot after surgery.

7. Medical Clearance – Your surgeons will discuss any issues related to pre-existing conditions with your primary care doctor, cardiologist or gynecologist before surgery.  This is part of the pre-op preparations, and why we encourage you to keep all of your medical paperwork in one central envelope.  Physicians may ask confusing questions in terms of your medical care and you need to be ready.

III. Prepare for Surgery

BreastBfflBag_Hi_Res1. Pack your Breast or Double Mastectomy BFFLBag® with a few additional personal essentials:

a) cell phone and charger

b) eyeglass case, if you wear glasses. Don’t wear your contact lenses to the hospital.

c) list of people and emails or phone numbers you want to call or text (or have someone else call or text) letting them know that you are out of surgery and okay

d) pajamas or nightgowns with front buttons  and elastic (not drawstring) waist bands

e) extra underpants and comfortable socks, outfit to go home in that buttons/zips in the front, shoes that are roomy and easy to slip on and off.

2. Do not bring jewelry or other valuables to the hospital.  Ask whoever is accompanying you there (spouse, companion, relative, friend, etc.) to hold your phone, wallet, keys or other personal items. Don’t forget photo ID and proof of insurance. You can put everything in the BFFLBag® and leave that with your companion.

3. Do not eat or drink anything after midnight the night before surgery – not even a sip of water. It is dangerous to have food contents in your stomach when you have anesthesia, as it might cause you to “aspirate” or get stomach contents into your lungs if you vomit.

4. Loosen or unscrew the tops of your medication bottles in advance so you don’t have to struggle with them after your surgery – at first you will be too weak, and shouldn’t strain your chest and arm muscles.

5. Some things you might want to have in the house for your recovery: stool softener, since pain medication might give you mild constipation. Also, get some moist wipes, sterile gauze, surgical gloves, tape and other wound supplies – or better yet, make sure you have a Breast BFFLBag®, which already contains everything you’ll need for wound care.

IV. The Day of Your Surgery

showerhead1. Take a long shower or bath in anti-bacterial soap the morning of your surgery, since it might be a while before you can do so again, but don’t put on deodorant or perfume, lotions, hair gel or powders.  Do not put in contact lenses; wear your glasses instead.

2. Leave early enough to get to the hospital on time. Go directly to Admitting and follow instructions from the staff.

3. A nurse will come in to take your “vitals” (temperature, heart rate, blood pressure, etc) and put an intravenous needle with tube (IV) in your arm. If you are having a lymph node biopsy you may have an injection of dye to locate the nodes during surgery.

4. You will be taken into pre-op waiting area where the doctors will come over and talk to you. They may also make some markings on your skin with a purple surgical marker. These purple marking will eventually wear off, of you can remove them safely after a couple of weeks with an alcohol pad.

5. The anesthesiologist will come and will give you medication to “go to sleep,” after which you will be taken into the operating room on a mobile bed.

V. When You Come Out of Surgery and “Wake Up” from Anesthesia

breastpatient1. In what seems like a minute (but is really several hours!) later you will be awake and in the recovery room. Your accompanying family member or companion will most likely be brought in to see you at that time. Many people are disoriented, emotional, and cold.  Ask any questions that you have, request extra blankets and, it you are nauseated or in pain, ask for medication immediately. You will come out of the operating room with a surgical bra, preferably the Masthead Elizabeth Surgical Bra (made by BFFL Co) — the most comfortable, convenient and effective surgical bra on the market.

2. When you are stable, you will be taken to your regular hospital room. You may feel pain, or just a “tightness” across your chest. However, if you are in pain, let your nurses know immediately.

3. You will have a little pump attached to your IV containing pain medication with a button you can press if the pain gets intense. It is monitored to make sure you don’t overdo it.

4. If you have pain despite the pain pump, let your nurse know immediately.
Your eyes, lips, and mouth might be very dry after surgery.  Ask the recovery room nurse for some ice chips, and use the eye drops, lip balm and waterless WISP toothbrush in your BFFLBag® toiletries kit.

VI. Dealing with Drains and Pain Medications in the Hospital

1. After a mastectomy, you may have tubes coming out of your surgical site which will drain fluid into little grenade-shaped bulb called a jp drain.  If you’re wearing the Elizabeth Bra, your drains will exit through an opening in the bra, rather than under the elastic (which pinches!).The drains have tubes that pull excess fluid from the surgical site and are very important in preventing complications such an infection, hematoma (build-up of blood) or seroma (build-up of fluids).  The fluid then collects, because of suction, in the bulb.  When the bulb becomes filled with fluid, it’s time to empty it.  The nurse will do this while you are in the hospital. They first stabilize and “milk” the drain, then measure the output and note its color, and finally empty the fluid from the bulb.

ElizabethSurgicalBra2002. The Elizabeth Bra has a little ring that nicely opens and can attach to your drain bulbs, so you have an easy spot to support the bulb without having to wear a fanny pack. In the Breast BFFLBag® important papers and cards folder there is a chart for recording drain output.  Start it in the hospital and continue at home, or start it at home.  This helps the doctor track your progress.

3. Hospitals should assign a nurse or physician’s assistant to teach you how to manage your drains, but it helps to have the instructions written down.  It’s really hard to remember anything they tell you immediately after surgery because the anesthesia effect is still lingering and you’re often on pain medication which makes it hard to remember things. Drain care instructions and a demonstration video can be found on BFFl Co’s website.

axillapilla300nodotr4. One or both of your underarms will be sore after surgery. Use the axillapilla® to take the pressure off your axillary incision (if you have one), or to reduce the pressure on your shoulders and upper back from any swelling you may have.  The soft pillow is also wonderful to use as a neck or lower back pillow.

5. Do not suffer in silence or think that something more can’t be done for pain.  Ask for a different pain medication if one they give you is not working.  Some pain medications can make you itchy – if you are experiencing this, please ask for Benadryl or other antihistamine. Your doctor might be able to change your pain medication to one that doesn’t cause itching.

6. Use the moist wipes in the BFFLBag® to stay refreshed and clean after surgery.

VII. Post-Surgery Tips

1. You will find that you are very tired for several days after surgery, maybe even longer. The best thing to do is rest.

2. When riding in the car, use the axillapilla® under the seat belt so that the shoulder harness doesn’t cross directly over your chest.

3. Do not lift anything heavier than five pounds for a week. Do not go grocery shopping without a helper, close hatchbacks, push, pull, or life anything over 5 lbs.  Ask for help. If necessary, teach your young children to climb up into their car seats themselves.

4. Sleep on an incline and use plenty of pillows to prop your arms. Ask for help to sit up. Do not push off the bed to get out, learn to roll to your side or just use your abdominal muscles.

5. If you were told not to shower, take a sponge bath. Have someone help you wash your hair in the sink or at a local salon.

6. When you feel up to it, try walking slowly.

7. Anti-scarring treatment varies by plastic surgeon. Ask what kind of lotion or ointment your particular doctor recommends to reduce scarring.  Do not pull your steri-strips (which hold your incision closed) off your incision. Let them fall off on their own, which could take up to two weeks. The longer they stay on, the better.

8. Most surgeons will recommend wearing the surgical bra until the drains are removed.  Ask if it’s okay to switch to another bra, such as our Estelle style, which has support, a front closure, and a soft cotton lining.

9. Most people are in the hospital for two nights.  If you experience complications, you may need to stay a few additional days.  You will be escorted to the hospital exit in a wheelchair and then assisted into a car or cab.  You must have someone accompany you home.

10. Visitors are a great idea, if you have the energy.  Many people find that they like the company, but others are exhausted by a constant flow of friends with food and advice.  Assign one family member as the contact person/gatekeeper.

vaseflowers11. Gifts are best when sent to your home, rather than the hospital.  It’s too hard to carry home heavy vases with flowers.

12. It’s normal to feel occasional spasms of the chest muscle or shuddering pains in your breast. This indicates that the nerves to the muscle are repairing themselves. Your breasts may feel numb and this is normal.

13. If you are a coffee drinker, you may develop a caffeine withdrawal headache the day after surgery.  Ask if it’s okay to have a cup of coffee in the hospital.

14. Your doctor will probably prescribe one or more of the following pain medications if needed for your post-op comfort, so here’s a little information about each:

Percocet (oxycodone/acetaminophen) or Vicodin  (hydrocodone/acetaminophen): 1-2 tablets every 4-6 hours as needed for pain

Colace (stool softener): 250mg twice a day

MiraLax (laxative): One tablespoon diluted in 8oz water once a day

Ativan: 1mg every 8 hours as needed for muscle spasm

Zofran: 8mg oral dissolving tablet placed on tongue every 6 hours as needed for nausea

Pain medication at home can be difficult to manage. Your physician may prescribe Percocet  or Vicodin.   You can always switch to acetaminophen alone, but if you want to take Advil or other ibuprophen that you check with your doctor first. Some physicians will not allow you to take ibuprophen because it can alter your blood’s ability to clot.

15. Give your spouse or child the official job as “back scratcher.”  It will be very hard to reach over or behind your head and reach your back.

16. Expect some mood swings.  Mastectomy involves removal of breast tissue that makes estrogen.  It may take some time for your body to adjust to these changes.  Even after surgery and anesthesia, some women find that there hormones are in flux and they feel moody or sad.  Don’t be afraid to mention this to your doctors; with time, your hormone levels will normalize.  If you are having surgery on your ovaries at the same time, your gynecologist can help with this transition as well.

VIII. Returning to Normal Activity

Fmaily picnic1. Family Life – If you have young children, take it easy.  Don’t pick them up. Instead, have them come and sit on your lap or next to you.  Picking up anything over 5 pounds, including a child, is not recommended for 6 weeks by most physicians.  If your child is still in a crib, arrange for help or teach your child to climb into a bed.  Cooking, shopping, housework should all be put on hold.  Ask for help and don’t put pressure on yourself to be wonder woman. 

2. Opening jars, turning door knobs and unscrewing lids (anything that requires strain and twisting) will be difficult.  Use an electric can opener to buy cans and containers lids that don’t require a lot of force.

3. When grocery shopping, bring a helper along or ask the store to provide one. Tell them that you cannot lift anything over 5 pounds and they will walk next to you and load your card and get you through checkout. Or, if available where you live, consider ordering groceries from one of the online delivery services like Peapod or Fresh Direct.

rest-af4004. Napping is a great thing.  Catching up on movies and TV shows should be on your calendar.

5. Driving is not recommended when you are still on pain medication.  With the drains in place, it is hard to make quick movements and to turn your body when backing up.  Arrange for carpooling, ask friends to accompany you to follow-up appointments, and let them carry your handbag!

6. Socializing is good because it takes your mind off your surgery, but begin slowly.  Invite people to your home and don’t be too overambitious with evening outings.  You will tire easily.

7. Wear comfortable clothes for a while.  Hoodies and sweaters with front zippers are ideal.  It’s best not to pull things over your head.

8. Returning to work greatly depends on the type of work you do. For highly physical jobs, you may need to take off 4-6 weeks.  If you work behind a computer, you may find that you can get back to work within a week, at least for part of the day.  Remember that you may tire easily and you should not stress yourself.  Doing too much, too soon, such as pulling/pushing heavy objects is the easiest way to bring on complications. Don’t make any big decisions or try to read any complex documents while on pain medication.

9. Resuming sexual activity is a highly personal topic. While some women love their new breasts and feel sexier than ever, others find that a new body image, low libido or energy level, and hormonal changes might all contribute to a lack of interest in the short term.  If your physician gives you the “green light” medically speaking, take it slowly and try not to respond to pressure from your partner until if you are not ready.  There is really no right or wrong time once your incisions have healed.

exercise10. Regarding exercise, most women are eager to get back to an exercise routine. One fellow patient wrote to me, “I am back to running, tennis etc. If nothing else, I truly believe that the exercise helped my mental recovery as much as my physical.”

One of the first things many women will notice is that their arms get flabby.  Remember that 5 pounds is the limit for lifting for several weeks, but you should ask your physicians if very light weights are ok to continue after surgery, and when you can start.

Some other tips about exercise:

    • If you have any complications such as seroma, hematoma, infection, you must discuss exercise with your physician before starting.
    • If your recovery is smooth without complications, you can begin with walking—it’s a good idea to walk with a friend and have him or her carry anything you need.  Vests with pockets are great during recovery. The implants can make you feel extra cold because the silicone lies directly on your chest wall.  If it’s cold outside, you may find yourself shivering because of the implants. Wearing a vest is a great way to keep you warm.
    • If your goal is to get back to jogging or running, and you have implants and not expanders, you may want to wear two workout bras for extra support and to keep your chest steady, with little bounce.  Runners should start on a flat surface or track. Running uphill may be exhausting, and your implants might feel heavy.
    • Stay out of public saunas , jacuzzis and hot tubs after surgery until your physician gives you permission.

IX. Down The Road

1. Keep a journal and take a few pictures.  You will appreciate looking back on your recovery and helping others who may have questions.

2. Usually,  between days 7-14 after your surgery, your drains will be ready to be removed.  The drain output at that point should be minimal and straw-colored.  Your physician may decide to pull only 1 or 2 at the first post-op visit, but don’t be disheartened.   Take a Tylenol or stronger painkiller before your appointment to avoid discomfort. Most surgeons will not close the drain opening with a stitch, but will allow them to close on their own.  You can cover them with gauze at first and then a band- aid.

WoundCare_web2. Keep your incision wounds protected.  Secure sterile gauze with paper tape or a sturdy band-aid over your drain openings and a piece of gauze over the mastectomy incisions so that there is no rubbing or abrasion.  If you are allergic to tape or dressing, try hypoallergenic surgical tape or other material your skin can tolerate. These can all be found in the wound care kit of your Breast BFFLBag®.

3. Depending on the reason for your surgery, you will most likely receive a pathology report about the tissue removed during the mastectomy tissue.  Your physician will discuss this fully with you, but do not be afraid to ask questions if you have any.

4. Shopping for bras.  You will be anxious to go out and buy some great bras, but avoid the urge because you’ll be swollen for 6 weeks or more.  Find one or two comfortable, everyday bras and save your money for later.  Once the swelling goes down and your breasts have settled to their final size, you’ll enjoy buying clothes without worrying about returns.

5. Follow-up MRI.  Some women are worried about whether the surgeon took out all the problem breast tissue. A follow-up MRI can often calm your fears, but your surgeon may not recommend this until six months.

6. If you had complications from surgery (infection, skin problems, etc.), they can take a long time to resolve. Don’t be afraid to seek a second opinion if necessary. Everyone heals on a different schedule and even the healthiest people can have problems.  Ask questions if something does not seem right.

7. Take things slowly and allow yourself to get used to your new body.  Getting back into a normal routine with work, family, friends can take weeks,  months even.  Also, you don’t have to discuss your surgery with people unless you are ready.

8. Follow-up appointments.  You will most likely see both your breast surgeon and your plastic surgeon at 3 months, 6 months,  and one year after your surgery.  If you feel you need to see either physician before those scheduled visits, though,  do not hesitate to contact his or her office.

We hope that this tip sheet has been helpful!  Please send us any feedback, ideas, changes, or suggestions you have.