Tuesday, July 27, 2010

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