Libby's Bilateral Mastectomy Experience

I was 55 years old when I learned that I carry a BRCA2 gene mutation. Being over 40, I was advised to have my tubes and ovaries removed as soon as possible. I made arrangements with Dr. Peter Schwartz to perform the outpatient oophorectomy. In addition, I began heightened surveillance of my breasts with Dr. Baiba Grube (both of Yale Cancer Center). On my first breast MRI, and subsequent needle-core biopsy, a stage1 invasive ductal carcinoma was found on my chest wall that was not palpable or visible on a mammogram. I received the cancer diagnosis one week before my scheduled procedure with Dr. Schwartz.

My gynecological surgery was followed one month later with a bilateral mastectomy with Dr. Grube. My plastic surgeon was Dr. Stephano Fusi of Guilford. I was told that an early stage cancer like mine would normally be treated with a lumpectomy and radiation. However, because of my BRCA2 status, I was at increased risk to develop a second breast cancer. I decided immediately to have both breasts removed and reconstructed. I wanted to have a matching set, and I didn't want to be constantly worried about the remaining breast.

I chose to have nipple sparing surgery. This greatly lengthened my initial surgery (~12 hours), but meant that I didn't have to have nipple reconstruction and areola tattooing later on. After my sentinel lymph nodes were tested and found clear of cancer, my breast tissue was removed and Dr. Fusi placed expanders under the biceps muscles that cover the chest to begin the process of stretching them out. In the absence of breast tissue, the implants were placed under the chest muscles to give a better shape to the reconstructed breast mounds. He also used alloderm tissue to provide more support for the implants. Saline solution was injected into the expanders during the surgery so that I always had some shape to the chest. About six weeks after surgery Dr. Fusi began increasing the amount of saline in each expander by about 50cc/breast every two weeks. Two "fill-ups" later we both felt that the right size and shape had been achieved. The next step was an “exchange surgery” where the expanders were removed and permanent implants were placed. I had to decide between saline and silicone gel for the implants. After some deliberation, I chose to go with the new gel silicone given the more natural feel and the reported better comfort level.

My entire experience, from learning about my BRCA2 diagnosis to recovery, took about eight or nine months. My “after cancer” journey will take a lifetime. I should mention that because my breast cancer was detected early, I was very lucky and I didn't have to have chemotherapy or radiation.

Preparation for my surgeries, particularly the bilateral mastectomy, involved many things……

* I read "Prepare for Surgery, Heal Faster" and listened to the CD with guided meditation by Peggy Huddleston. This empowered me to take back control over my situation and go from feeling terrified to calm going into surgery.

* I built a webpage on www.CaringBridge.org to keep my community of family and friends informed about my progress. It gave them the opportunity to leave loving and supportive messages.

* I found the breast cancer support groups in my area and went to the meetings. I started with two, and now only go to one.

* I bought a full spectrum HappyLight 4500 from Verilux (http://www.verilux.com/) to sit in front of during my recovery to help fight depression.

* Another good book I read is Jessica Queller's "Pretty is What Changes," about her own experiences with BRCA and prophylactic bilateral mastectomy.

* The Necessity Bag that Dr. Grube's PA gave me at my pre-op appointment was a fun and useful surprise. A list of participating doctors can be found at www.necessitiesbag.org.

* I worked with a good physical therapist who has experience with mastectomy patients. I began about six weeks after surgery, in order to lay down functional scar tissue.

* Jin Shin Jitsu and Reiki massage were very helpful before and after surgery.

* I wore loose comfortable clothes with shirts that button down the front for easy on and off.

* I arranged to have a visiting nurse, from the VNA, to help with my drains when I first came home from the hospital (I had four drains, two on each side, for a total of four weeks). I found that using big safety pins to hold my drains together allowed me to flip them over my head and out of the way.

* I tried to eat more protein for healing, celebrate the little victories and appreciate my progress. I did things I enjoy, rested and laughed a lot!!!

Here are several websites that were useful:

www.cancer.org

www.facingourrisk.org

www.armyofwomen.org

www.lotsahelpinghands.com

www.cleaningforareason.org

Everybody's cancer experience is different. However, there's lots of help and hope available. Don't be afraid to ask questions, and don't be rushed into any decisions that don't feel right for you.

I hope this helps. Good luck.

To your health

~Libby Read more!

Fran's Bilateral Mastectomy Experience

I was 47 years old when I found out I was BRCA1 positive. Two years prior to that my sister was diagnosed with breast cancer at age 56. Her doctor suggested genetic counseling, due to our family history, and she learned that she carried a BRCA1 mutation. I waited two years to consider genetic counseling because I didn't think that I would have the gene mutation. I am one of five siblings, two of us are positive for BRCA1 (the oldest and the youngest (myself)).

Our family history includes our paternal grandmother and two paternal aunts who died in their early forties from breast cancer. A paternal female cousin was diagnosed with breast cancer in her forties and is doing well. Another female paternal cousin had ovarian cancer and died at age 45. Our father died from lung cancer at age 74.

After learning that I was BRCA1 positive in 2006, I chose to pursue increased breast surveillance. This included my usual routine - mammography in the spring, ultrasound in the summer, MRI in the winter. An MRI in December 2009 detected a breast lesion at the 5o'clock position on my left breast. After finally getting an ultrasound guided biopsy I was diagnosed on January 13, 2010 with invasive ductal carcinoma, stage 1.

I decided to have a double mastectomy with reconstructive surgery. I have researched every possible surgery there was and the doctors that did them. In making my decision, I was concerned about insurance coverage and if I would still have a job after all the time needed for recovery. After searching doctors, I decided that Dr. Barbara Ward would be my breast surgeon and that Dr. David Greenspun would be my plastic surgeon. It was also good to know that these doctors have worked together numerous times and had the highest regard for each other. I decided on reconstruction with DIEP (deep inferior epigastric perforator). My prep for this operation was to stop smoking. I then had work-ups with pulmonology, cardiology, my general practitioner and more blood tests, chest x-rays, breathing tests, cat-scans and urine tests. I also had an MRA (magnetic resonance angiogram) to evaluate the blood vessel that they needed to move from abdomen to breast area in the reconstruction process.

My surgery date was on March 5, 2010. The day came. Surgeries went well. Dr.Ward removed the cancer and some sentinel nodes (had a dye injected into my breast area the day before in the Nuclear Medicine Dep’t at Greenwich Hospital). Dr. Greenspun removed everything from the breasts and replaced the breast area with blood vessels from my abdomen. Then transferred my own fat, tissue and skin from my stomach to my breasts. This took 11 hours. It is microsurgery. My recovery in the hospital was 3 days. While there, I received my final pathology. The results were not what I was hoping for. It revealed a progesterone negative, estrogen weakly positive, HER-2/Neu POSITIVE breast cancer. This meant I needed chemotherapy. I began chemo on April 14, 2010 and it will continue through July 2010. I will be on herceptin for 1 year, until next April.

The first 3-5 weeks were definitely rough. I was sore and unable to take a daily shower, dress myself or tend to my stitches independently. Thank God for my husband and daughter. I couldn’t lift my arms over my head with out feeling sore. I still have numbness in my underarm are on my right side (4 months later).I didn’t feel comfortable driving till a month later. I was dependent on others to take me to my weekly check-ups with Dr. Greenspun. It was hard for me to accept care giving from others, since I had always been the caregiver for friends and family. That was the emotional toll on me and still is today. I need to learn to just accept “gifts” of caring from others. After the 6 week mark I went back to work. I am a cook in the Ridgefield public school system. I needed to depend on my staff more to assist me in my daily duties (i.e. heavy lifting). They also were a Godsend. When chemo started I needed their help even more. I was able to adjust my schedule and come in later. I still cooked and did the managerial stuff, but at a slower pace. I would get tired during the day .And this frustrated me, since I always did my duties faster and without a lot of assistance (very independent and stubborn at times).

This is all a new and unchartered journey for me, my family, and my friends .Would I do it over again? Yes. Would I do the same thing? Yes. Dr. Ward and her staff are awesome. Dr. Greenspun and his staff are phenomenal. Would HIGHLY recommend both doctors to any one.

Best to all, Frances Read more!

Rochelle's Bilateral Mastectomy Expereince

On June 10, 2009 I went to Yale Radiology for my annual screening mammogram. Dr. Philpotts, the chief radiologist, found an area of concern in my right breast. I was referred to Dr. Baiba Grube, who performed a surgical biopsy after an unsuccessful attempt at a less invasive method failed. I was 68 years old, fit, slim, a non-smoker who exercised and ate healthy, mostly organic food. I was in total shock.

There had been no breast cancer in my family that I knew of, but then I had only aunts by marriage. When I returned to Dr. Grube to learn the results of the biopsy, she took me in her arms and told me gently, "Rochelle, you have a baby cancer. But you are going to live a long life." She patiently discussed all my options and immediately referred me to Dr. Fusi, the wonderful plastic surgeon who I saw that same day. We talked about a little lift for the left breast and possibly doing a mastectomy and reconstruction on the cancerous right breast in lieu of a lumpectomy and radiation. Dr. Fusi and I discussed how difficult it would be to match the two breasts, as the biopsied breast was tiny and the left one a full cup size larger but very stretched and saggy. (I called them "Flopsy" and “Biopsy") He also told me that in my case, after radiation, it might not be possible to reconstruct the irradiated breast if I had a recurrence and wanted to go that route in the future. It was a lot to think about.

My husband called the American Cancer Society and within 2 days they had put me in touch with 2 women, one of whom decided on a lumpectomy and radiation, the other on a mastectomy and reconstruction. The one who chose the mastectomy became my "Bosom Buddy", and I couldn't have gotten through the ordeal without her!

At this point I had no idea that I was BRCA positive; and for aesthetic reasons I planned to do a single mastectomy with reconstruction. But having noticed that my father had died from pancreatic cancer and I am an Ashkenazi Jew, my very astute surgeon arranged for me to undergo genetic counseling. No one expected my results to be positive for a mutation in the BRCA2 gene!

As soon as I got that news, I scheduled a double mastectomy with reconstruction. I knew that I could not deal with the feeling that I had a ticking time bomb in my own body. My surgeon also ordered an MRI-guided biopsy of my left breast, which had showed some areas of concern. I was then referred to Dr. Peter Schwartz to discuss having my ovaries removed. That same day he scheduled a preparatory ultrasound, which showed a grapefruit-size cyst in one of my ovaries. (Miraculously, it eventually turned out to be benign.) So, within 3 days at Yale New Haven Hospital I had a nipple-sparing double mastectomy with reconstruction and a complete hysterectomy. My care was superb, and I'm here to tell the tale. But I must admit that after the initial euphoria I felt at still being alive, it took me an additional eight months to feel comfortable in my “new skin”.

At first my new breasts were anointed with antibiotic cream twice a day and covered by protective dressings. Steri-strips protected the sutures that would be removed by the plastic surgeon about a week later. There were 2 drains in each breast that had to be emptied twice each day. (My husband did this for me.) There was considerable swelling, and one of the nipples was more retracted than the other. One breast looked like it was having trouble surviving the trauma of surgery and reconstruction. It was difficult to get out of bed until I realized that I could push down with my arm to get leverage. I used pillows on either side of me to protect my breasts once I had permission to sleep on my side. I was uncomfortable, but not in enough pain to need medication.

In the shower I used a handheld shower attachment and sat on a cast aluminum garden chair that my husband brilliantly substituted for the ordinary shower chairs that you can find at Home Depot or medical supply houses. If you have abdominal surgery along with your mastectomy you will probably find it more comfortable to sit while showering. Make sure your supplies are all easily within reach --you don't want to bend down to get your soap!

I pinned the drains to a long ribbon that I wore around my neck in the shower. I arranged to have a visiting nurse check on me and had an aide who came once a week to wash and dry my hair for a couple of weeks. I tried to walk as much as possible, right from the beginning. I also drank unsweetened cranberry juice (reasonably priced at Trader Joe) and took a Probiotic (like Culturelle) to help my body cope with all the procedures and antibiotics. Ask your doctor if that would be appropriate for you. As soon as I was given permission, I started doing the appropriate exercises to prevent loss of motion and to regain my strength. I found it more comfortable to have smaller, more frequent meals than 3 square meals a day. The spacers felt like I was wearing an iron corset under my skin. Sometimes I felt like pulling them down, (one side often felt higher than the other) but of course I couldn't. . .

Months passed . . .

I had my permanent silicone (Gummy Bear) implants in December. I didn't know that there was such a thing as an “anti-nausea patch“ and spent the night after that surgery vomiting. I didn't like my implants at first; I thought they were too big and felt very self-conscious. None of my clothes fit.

More months passed. . .

“Tincture of time” did its work and I am sitting here writing my story wearing a sundress over my beautiful (size 32DD) “Angels Lace Demi” Victoria's Secret bra and matching bikini panties. I have just done a little yoga and made blueberry pancakes for my husband. When I finish writing this I will sit in my old Adirondack chair and read a good book. I've got my life back.

To all of you who are about to start this arduous journey I offer some suggestions in the hope that you will find them useful :

Always take a family member or close friend with you to all medical appointments. *Always take a family member or close friend with you to all medical appointments.

* Take notes and ask questions.

*Get a “Bosom Buddy” from the ACS. Call 1-800 227-2345

* Read “Pretty Is What Changes” by Jessica Queller. Ironically, she was being interviewed on NPR the very morning I went for my mammogram. She spoke eloquently about her decision to have a prophylactic bilateral mastectomy at a very early age.

* Use the BRCA babes as a support system -we are here for you as all our strong sisters have been there for us.

*Check www.necessitiesbag.org to see if your surgeon participates in the wonderful goodie bag program that will give you a gift of special treats to make you more comfortable after surgery. I didn't know about this little perk - make sure you don't miss out as I did.

* Go to Saxon Kent in Orange for superb fitting and a large selection of bras. Most insurance plans will cover at least 2 bras a year, so find out what you are entitled to get. In Orange, CT they are at 185 Post Rd. (203) 440 2916. They also send someone to the boutique at St. Vincent's Hospital in Bridgeport, CT. Phone (203) 794-3682

* I have heard that the new boutique at Smilow has a fitter from the lovely Soleil Toile lingerie shop in Westport, Ct.

* Don't expect to be given a supply of surgical bras when you leave the hospital. I was only given one, reluctantly, and they take a long time to dry.

* After my permanent implants were in I was told that I needed to wear a bra 24/7 because my skin was very thin and there was a danger of their falling if I didn't. That was unexpected . . .but after the initial disappointment I adjusted and am now fine with it.

* To sleep in I found the most comfortable bra was the Grenier 8576 from Canada by way of Saxon Kent. A very supportive bra to wear in the first months after your permanent implants is the Amoena Lara 0675, also at Saxon Kent. (they will alter any bra to fit you, shorten the straps, and give you extenders for the back if necessary).

* Bring a pillow in the car after surgery to protect your chest from the seat belt.

*A few inexpensive (you'll never want to wear them again) shirts that button down the front will be most comfortable at first, as will drawer string bottoms. You can also slit a large undershirt down the back and fasten it at the top with a safety pin.

*Sometimes people just don't know what to say, but they care and they want to help. Let friends do nice things for you. Accept their offers of food with gratitude -even if it's not something you'd make yourself.

*Don't be ashamed to say “I need help with this.”

*Prepare your night table with fragrant hand cream, lip balm, a good reading lamp, and light reading material.

*Stock up on all the DVD's you missed--now's the time to get a netflix subscription!

*Don't feel guilty about ordering takeout. Indulge yourself.

*Pamper yourself in small ways--a manicure and pedicure before surgery or chemo is something you deserve.

*As soon as you can leave the house join a support group. Just meeting others who have gone through what you are dealing with now is enormously helpful. If your hospital or town offers support services for cancer survivors take part in all the programs you possibly can. Call your local hospital, check listings in the local newspapers (that's how I found mine), or ask the reference librarian at your library.

*Restorative yoga will make a significant improvement in your recovery time.

*Be prepared to accept that all the attention you were given in the past, during surgery, and for many of you during chemo, is quite suddenly withdrawn as you recover. It may make you feel a bit lost, but you can be sure that any time you write to us at our support site we will always be there for you.

Good health and Good Luck! Rochelle

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New Article Featuring Information about Genetic Counseling and Testing

Make sure to check out this new publication "Should You Consider Genetic Counseling and Testing?" Click on the above light blue link to be directed to the article. Read more!