Sep 16, 2018 Latest post:
Oct 31, 2018
Dear family and friends, Welcome to my not=so-excellent adventure. In mid July i was diagnosed with bilateral breast cancer. Some of you may remember that this is my second rodeo. I had DCIS breast cancer in 20o6 and was treated with a lumpectomy and radiation. I am not so lucky this time. Firstly, you can only have radiation treatment to a breast once. If diagnosed a second time, you have to have a mastectomy. The 'ugly' tumor- so named by my care team- is in the right breast, the same as last time. However, this one is larger - 5 cm- and very poorly differentiated and grade 3. I include technical details for my clinical friends. the rest of you can skip right over these details. the right sided tumor histology is ok- HER2 negative, estrogen positive, progesterone negative. We are all interested in having that removed. The mass on the left is invasive ductal cancer with better histology - HER2 negative, estrogen positive, progesterone positive and 2 cm. I had the option of a lumpectomy with radiation. I have opted for a bilateral mastectomy with immediate reconstruction. I think i have proven that i like to make breast cancer so i don't need a fourth tumor, thank you very much. a surgeon I visited thought this plan seemed unnecessary. She suggested this route: single mastectomy with skin expanded on the right, lumpectomy on the left. Then, after 4-6 weeks of healing, 4 months of chemotherapy. After my blood counts come back from that, 6.5 weeks of radiation. Oh yes, THEN reconstructive surgery in March. I would be on the back side of this by July. And, of course, 7 years of aromatase inhibitors and every 6-mo. breast MRIs for 2 years and still the possibility- seems more like the likelihood- of recurrence in a few years and I would be right back here again. Now I know how attractive that option sounds but I had to turn that one down. I opted to have both breasts remove and have reconstruction all in one surgery. It is a huge undertaking: 12-13 hours of surgery followed by a few days in ICU then a long convalescence. I opted for a DIEP reconstruction., described below. Deep inferior epigastric artery perforator flap reconstruction, called DIEP flap reconstruction, is a form of tissue reconstruction considered safe and with a low risk of surgery-related problems. Unlike some other kinds of tissue reconstruction, such as the TRAM flap, DIEP flap reconstruction uses only skin and fat, not muscle, so it avoids weakening muscles and may cause less pain. DIEP flap reconstruction has also been shown to lead to shorter hospital stays, better healing of the area tissue is taken from, and higher satisfaction with how the new breasts look and feel. Essentially, they take skin and fat from your abdomen and fashion new breasts. All good except it means a large abdominal incision as well as a large bilateral mastectomy incision. I will be pretty limited for quite a while.
The good news, and there is plenty:
- my scanorama results were all negative (bone, brain, abdomen, pelvis and chest)
-so far, my nodes look clear on breast MRI and ultrasound
-my genetics were all negative for the BIG BAD 9 associated with breast and ovarian cancer (also highly linked with pancreatic, always a concern as my dad dies from this). If they had comeback positive I was also going to I have to have a hysterectomy so i dodged that bullet
- I have great friends who have helped me so much: Pat Donehower went to my 2 different oncology appointments and helped me make some hard decisions, Terri and Allan Frankel were a huge support in my decisions and also trying to get me a surgical appointment sooner than March! Jenny Rusby, breast surgeon, and friend from England was incredibly helpful in talking me through the surgical options and general good counsel about the way forward. Frank and Amelia who helped me move away from work for a while though it means more work for them. Laurie Loveland, my stalwart supporter. And Martha, my BFF, who gets to hear me rant and obsess and about every other emotion and remains the constant wonderful presence in my life.
-My St. Stephen's church family who is organizing meals and general support of every kind. And Lucy and Larry, my own pastoral support team, holding me up in prayer and kindness.
- a great care team of Kari Rosencrantz, breast surgeon, John Nigriny, plastic surgeon, and Bradley Arrick, oncologist and Kim Maynard, Navigator
-The British Support Team of Megan, Nicola, Gill, Tim, Nova, and Steve, I am so glad we had last weekend in London. You are all so incredibly dear to me.
-A loving son that calls me just about every day and is flying home from Oregon to care for me and wonderful sister, Susan, and brother, Peter and sister in law, Leah.
So, the surgery is tomorrow, Tuesday, 9/18, from 7:30 to who knows when. Terri and Pat are co-authors on this site and will post updates. I hope to be back home on Saturday but we shall see. If you would pray for me: for strength and courage to face the long road ahead, skill and patience for my care team, and the knowledge that I am in God's hand, I would sure appreciate it.