In Part 1–Chemotherapy, we entered Diane’s story as she was undergoing pre-operative chemo for invasive lobular cancer (ILC) and lobular carcinoma in situ (LCIS) of the right breast, a relatively uncommon form of the disease. That post discusses breast cancer statistics, as well as the details of Diane’s chemotherapy protocol and its effects.
In Part 2–Diagnosis, we reviewed why Diane experienced an eight-month gap between first feeling her breast lump in August 2015 and being diagnosed with cancer in April 2016. Readers will find very important information and advice in this cautionary tale—particularly about breast self-exam, biopsy, and imaging techniques, as well as about family history, lifestyle, and genetic testing. The post also discusses Diane’s second-opinion consultation with a UPenn oncologist.
In this third post of the series, we read about Diane’s two second surgical opinions at major Philadelphia-area cancer centers as she was completing her pre-op chemotherapy, as well as the discussions she had with her local doctors. These consultations were instrumental in helping her decide where to have her surgery and what procedures were best for her. Diane has recently undergone bilateral mastectomy and preliminary reconstruction and is recuperating well. The full story is below.
Please also see Breast Cancer Risk Factors & Breast Cancer Resources.
INTERACTIVE POST: Highlighted/underscored text, images, and media contain links to reliable external resources. The stories, information, and resources on this site are intended to supplement—not replace—the advice of your clinical team.
Diane’s Story, Continued—Invasive & Non-Invasive Lobular Carcinoma, Right Breast
On September 20, Diane and I met for coffee—actually, healthy fruit smoothies with added whey protein (good for Starbucks!)—to talk about her progress and various consultations. She had just come from the gym and apologized for her appearance! The last time I had seen Diane was at her home on August 10, when she was still undergoing chemotherapy treatments—yet before I arrived, she said she had just climbed “her” mountain that morning in the New Jersey countryside.
To begin, let’s view an animated overview of breast cancer diagnosis and treatment by the medical education company, Understand.com. Then we’ll read about the “homework” Diane did while recovering from chemo.
This video makes a very strong case for breast self-examination: 20% of cancerous tumors are first discovered by women themselves, as in Diane’s case. The video also shows mammography, surgical options, radiation, chemotherapy, and breast reconstruction. (Your doctor can purchase a license to use the full video library.)
Click to view on YouTube
A Repeat MRI and Second Opinion #1
Diane’s local breast surgeon ordered a repeat bilateral breast MRI with contrast. She wanted to check the size of the tumor in the right breast, as well as the size of the two small spots in the left breast that were seen on the April MRI. This second MRI was done on August 22, near the end of Diane’s chemo treatment. Diane requested that the MRI be sent to the Abramson Cancer Center at the University of Pennsylvania, where she had gotten a second oncology opinion on August 3 (see Part 2), in time for her second-opinion surgical consultation on August 29.
At the time of the UPenn consultation, the surgeon said that unfortunately the radiologist had not had a chance to review the recent MRI. However, the surgeon looked at it and said that, compared with the previous MRI done in April, it looked to her as if the mass in the right breast had shrunken. She also looked for the two spots in the left breast and said she saw only one. The more suspicious of the two had disappeared, and the other one, likely a cyst, was still there.
Diane said, “The fact that the suspicious spot went away while I was in chemo indicates that it was probably cancer. While this was disappointing, it was not surprising given that lobular cancer is more frequently found in both breasts than ductal. At any rate, the spot was tiny and certainly not life-threatening at this point.”
Diane asked the consulting surgeon whether, in her opinion, she needed to have both breasts removed. She began by saying Diane definitely needed a right mastectomy. Although the tumor in the right breast was smaller, its physiology was such that a lumpectomy was not possible—the mass was still fairly large and of an invasive type. Then the surgeon said that also removing the left breast at the same time (prophylactic mastectomy) was a “gray area.” Although the spot that disappeared during chemo likely was cancer, this could not be confirmed.
“The surgeon also said if a bilateral mastectomy was not done, I would have to be monitored ‘very heavily’ for the rest of my life. And as I already knew, traditional breast screening doesn’t work on me.” (See the important discussion of breast imaging techniques in Part 2; also refer to RadiologyInfo – For Patients and Susan G. Komen’s FACTS FOR LIFE—Imaging Methods Used to Find Breast Cancer.)
“So I asked her what she would do if she were me. She said she would have the bilateral mastectomy.” The doctor’s final comment was that Diane was too thin for flap surgery (autologous reconstruction). Major surgical and reconstructions options are presented in the Aside below, which also contains resources for further research and reading.
ASIDE—SURGICAL & RECONSTRUCTION OPTIONS:
The following primary options and many more subcategories of these options are described in detail at BreastCancer.org:
Flap Surgery (Autologous Reconstruction)
Reconstruction Options: A Comparison Chart
Also see: Center for Restorative Breast Surgery (New Orleans)
More Resources
Breast Cancer Surgery and Reconstruction: What’s Right for YOU by Patricia Anstett and Kathleen Galligan; Rowman & Littlefield, June 2, 2016 [Book]
Defying Doctors, More Women with Breast Cancer Choose Double Mastectomies by Lucette Agnado, Wall Street Journal, July 10, 2015 [Read & View Online Article with Video OR Print PDF]
— Related: Beauty through the Beast – Blog by Chiara D’Agostino [featured in WSJ article]
My Medical Choice by Angelina Jolie; Op-Ed, New York Times, May 14, 2013
— Related: Jolie’s Disclosure of Preventive Mastectomy Highlights Dilemma by Denise Grady, Tara Parker-Pope and Pam Belluck; Health, New York Times, May 14, 2013
The Mayo Clinic Breast Cancer Book, October 2012
The End of Chemo and a Discussion with the Oncologist
On August 30, after her final chemo treatment, Diane talked with her oncologist about the recent MRI and the visit with the UPenn surgeon. He agreed that the tumor in the right breast had shrunken and confirmed that the suspicious spot in the left breast was gone—and that it was probably cancer because it disappeared during chemo. “This was disappointing, but clarifying,” Diane said.
The oncologist also said that he recommended bilateral mastectomy. It is common to get lobular cancer in both breasts, and he felt it was too risky not to remove both. “He told me he didn’t say this lightly, pointing out that I would have constant scares for the rest of my life if I didn’t have both breasts removed. Also, he felt it was safe to do a bilateral mastectomy—and that he would advise his wife to have it done if she were in my position.”
Diane also asked him whether he thought she should have her surgery done at the University of Pennsylvania or at Hunterdon Breast Surgery Center in Flemington, New Jersey, where she had gotten her chemo and where her breast specialist was affiliated. “He said my local breast surgeon was highly skilled and respected and had formerly been affiliated with Robert Wood Johnson University Hospital in New Brunswick, New Jersey—and that Hunterdon was lucky to get her. He also said something I had learned for myself—that she cares about her patients.”
In thinking back to when she had her sentinel node biopsy done at the time her chemo port was inserted, she said her surgeon could tell by the “look and feel” of the node that it wasn’t cancerous, and this was confirmed in the lab (see the discussion in Part 1). So she had earned Diane’s trust.
Visits with the Local Breast Surgeon and Plastic Surgeon
Diane returned to see the local breast specialist on September 7. She agreed that the tumor in the right breast had shrunken a great deal. “All the doctors who looked at the MRI concurred on that,” Diane said, naturally happy with this news. But the surgeon also agreed that the now-absent spot in the left breast was probably cancer, and she noted that several small spots on the right were also gone—all likely from chemotherapy.
So Diane asked her the now-familiar question: Did she recommend a bilateral mastectomy? The surgeon said Diane didn’t have to have both breasts removed, but, like the other doctors, said she would have to be monitored very closely. Also, she said that having a bilateral mastectomy and reconstruction would give her symmetry—gravity would pull the remaining left breast down over time.
Diane said, “So I asked her what she would do in my position, and she said she would have a bilateral mastectomy. She also said she would recommend silicon implants, which are now much safer than they used to be—and that the old concerns had even been overblown.” Diane told the surgeon she had made an appointment with the local plastic surgeon the next day and asked her for her opinion of him. She said, “He’s an artist—truly gifted.”
The next day, September 8, Diane saw the plastic surgeon in New Brunswick, who also is affiliated with Robert Wood Johnson in addition to having operating privileges at Hunterdon. He showed Diane his electronic portfolio of breast reconstructions, and Diane remarked on how good they looked. He said, “Lovely, aren’t they? Breasts are like snowflakes—no two are alike!” Then she asked the plastic surgeon about reconstruction options. Like the other doctors, he said Diane was too thin for flap surgery. He suggested a different approach, one he referred to as a “revolution”: bilateral mastectomy with nipple preservation and silicon implants.
At this point, Diane was planning to have two more second-opinion surgical consultations—one at Memorial Sloan Kettering Cancer Center (MSKCC) in New York and the other at Temple Health Fox Chase Cancer Center in Northeast Philadelphia. (Diane’s local breast surgeon follows the Fox Chase protocol.) She asked the plastic surgeon his thoughts about having the surgery done at a university hospital versus locally. He said, “If you go to a teaching hospital like Sloan Kettering, your surgeon will be a fellow and still learning. He or she will be new— very promising, but not very experienced yet.” So Diane asked him where he would send his wife, and he said Hunterdon. “Hunterdon has invested a lot of money in the Breast Surgery Center, hiring the best and most experienced area surgeons and even surgical nurses that specialize in breast surgery,” he told Diane.
Finally, Diane asked him his opinion of her local breast specialist. He said he “loved working with her” because she was “one of the best breast surgeons he’d ever seen.”
Second Opinions #2 & #3
Diane decided not to keep her Sloan Kettering appointment based on the plastic surgeon’s comments, but she did have one last second-opinion surgical consultation at Fox Chase on September 12. When they discussed the now-absent spot in the left breast, this surgeon said it may have been cancer, but there was no way to tell for sure.
In answer to the question about whether she would recommend bilateral mastectomy, the doctor at first said, “It isn’t absolutely necessary.” But after Diane questioned her further, she conceded that because Diane’s breasts are “lumpy, large, and dense,” she could see the “wisdom” of removing both breasts.
In the end, she agreed with Diane’s having “a contralateral prophylactic mastectomy,” or removal of the possibly at-risk left breast as well as the cancerous right one at the same time. She said Diane was “at somewhat higher risk of developing cancer in the left breast” than women with other forms of cancer, such as ductal carcinoma. Like the other doctors, this surgeon said Diane was too thin for flap surgery. (The only doctor who had not said that was her oncologist.)
Also, like the other doctors, this consulting surgeon said Diane would need to be heavily monitored if she had only a right mastectomy. Because of Diane’s breast architecture and cancer type, she would need screening mammograms and MRIs twice a year, which could be stressful and anxiety producing. (Plus, as discussed in Part 2, Diane is not a good candidate for mammography.)
Interestingly, this surgeon strongly agreed with doing chemotherapy first before surgery. (Also see more about this in Part 2.) She said that doing surgery first and waiting one-and-a-half months before doing chemo would allow too much time for cancer cells to migrate.
Finally, Diane asked the surgeon’s opinion of having the surgery at the local hospital by the local surgeon. The consultant said she thought it was fine and that Diane was already getting good treatment at Hunterdon.
The Final Decision
Diane made appointments with her local breast surgeon and local plastic surgeon to prepare for surgery at Hunterdon. In an email, she said: “I saw a total of five doctors. Four of them recommended a bilateral mastectomy for several reasons, and the probable left breast cancer was one of them. One said she saw the wisdom of removing both breasts. I feel that I have enough consensus among the doctors that I saw and am confident with the team at Hunterdon. I think you can get too many second opinions. After a while it becomes confusing. My surgery, a bilateral mastectomy with implant reconstruction, is scheduled for October 6. It will all be done at the same time under one anesthesia.”
Before the mastectomy, Diane underwent same-day “decision surgery” on September 22. This included a biopsy of the area around the nipples to see whether the cancer had spread. If not, she would be eligible for nipple-preservation surgery. Her chemo port was removed at the same time. The next day, she said: “Surgery went well. It took about 1.5 hours under general anesthesia. And my port is gone—yea!!!” However, she said she was very sore and had to take Percocet the first night. But by the next day, she said she was just taking Tylenol and was improving.”
Diane returned for her post-op appointment on September 28. She reported: “The biopsy results were good, so I’m keeping my nipples. What a strange sentence—sometimes I feel like this is all a long, weird dream!”
After the pre-surgery, her surgeon said depending on what the pathology report showed after the mastectomy, Diane might need radiation treatment in addition to taking tamoxifen. And she could expect to have no feeling in her breasts. But based on the latest results, it seemed very likely that Diane would emerge from the mastectomy cancer-free.
Surgery and Reconstruction
In an email she sent while preparing for surgery, Diane said, “I’m pretty crazed right now,” by which she meant she was very busy preparing to go to the hospital for her surgery on October 6. I responded by return email, saying that I empathized based on my own experience almost three years ago, when I was preparing to undergo a hysterectomy for uterine cancer.
In my message, I said: “So much to do to get organized, knowing you will be constrained for a while when you get home. I even went through a kind of ‘nesting’—I actually wanted to clean the house so I could come home to a comfortable space. The only other time I had an urge to do this was before my son was born 32 years ago. Not that I don’t like the house being clean all the time—I just don’t like being the one that has to get it that way! And bills to pay and clothes to launder and food to prepare and lists to compile and so on.”
Diane replied, “That’s so funny—that’s exactly what I’ve been doing, cleaning like a madwoman! And cooking and freezing meals. It somehow makes me feel calmer Plus the doctor said no housework for four weeks after the mastectomy. I agree—it reminds me of before I had each of the kids.”
I find it inspiring and heartwarming that women have this “nesting” instinct to create a clean, safe home—not only for others, but for themselves. It’s part of the beauty of who we are as females.
Diane had her surgery as planned on October 6: a bilateral mastectomy with nipple- and skin-preserving reconstruction. She was very happy to look down and see her own nipples and skin, even though she no longer has any feeling in the breast area. Drains and dissolving sutures were inserted, and the surgeon filled temporary implants called “expanders” with air.
In an email three weeks later, Diane said: “I am doing fine. My drains came out on Monday, October 24, which was very exciting. They also removed the air from the expanders and injected them with saline (salt water). I am driving and have started walking again—only a half mile, per my doctor’s instructions, but am increasing daily. I will see the oncologist on November 1 to see if he agrees with the no-radiation plan suggested by my surgeon.”
I met Diane for coffee on November 2, and she looked great. Her hair has started to grow back, and she is now sporting an attractive new do consisting of very short baby-fine white hair that reminds me of a younger version of British actress Judi Dench. We talked about the advantages of short cuts, which are youthful, sporty, and easy to care for—and they let you show off your cool earrings.
British Actress Dame Judi Dench, sporting a very attractive short do. Although Judi is about 25 years older than Diane, I am inspired by her youthful panache—which is why she and Diane remind me of each other. You can find many pretty and funky short—including white and gray—post-chemo hairstyles on Pinterest and other websites.
Diane also had a lot of good news. The aggressive chemotherapy had reduced her tumor by about 90 percent so that it was no longer even palpable before the procedure. (Diane said she also took flaxseed, which some believe protects against breast cancer, as well as many other conditions; but she of course credits the mass shrinkage to her chemo.)
The pathology report showed no invasion of the chest wall. This, plus the September decision surgery results showing no invasion to the nipple, and the earlier sentinel node biopsy at the time her chemo port was inserted last spring led Diane’s oncologist to agree with the other doctors that she did not need radiation.
Although she needs no additional treatment, Diane will be given adjuvant medication therapy with tamoxifen. This is not without risks, including hot flashes, blood clots, and uterine cancer. But the tradeoff is a 35 percent reduction in the risk of recurrent breast cancer. Now that Diane is officially menopausal, they will switch her to another estrogen-uptake blocker in a year.
In a recent email, Diane reported: “The oncologist said that I should start the tamoxifen, but there was no urgency. He said I could start it after the final reconstruction surgery if the plastic surgeon agreed. However, I decided to start taking tamoxifen within the next few weeks—as soon as my COBRA kicks in. I have heard the dose is one pill a day. I’m not sure what they will switch me to in a year or two, and neither was the oncologist.”
In three months, Diane will get her permanent implants, which will be filled with silicon, in same-day, one-hour surgery under general anesthesia.
And then, after an intensive nine months doing battle with a tough opponent, Diane will be reborn to resume her active, fulfilling life—cancer free and full of renewed hope.
Postscript
I want to acknowledge Diane for her generosity and courage in sharing her breast cancer story. She had a particularly hard road to travel because of a delayed diagnosis caused by the nature of her pre-operative breast architecture, the limitations of imaging techniques in her case, and the uncommon form of breast cancer (lobular) she had.
It is our hope that many women, and the people who love them, will benefit from the perspectives, information, and resources in this breast cancer series. Please share Diane’s story liberally with the ladies in your lives.
We will follow Diane’s progress through her final reconstruction and will post updates as they become available—all with what we have every reason to expect will be full of good news. If you have any questions for Diane, please use the Contact Form.
Click for a Comprehensive List of Breast Cancer Resources
Also see:
Diane’s Story: Part 1–Chemotherapy
Diane’s Story: Part 2–Diagnosis
Breast Cancer Risk Factors
INTERACTIVE POST: Highlighted/underscored text, images, and media contain links to reliable external resources. The stories, information, and resources on this site are intended to supplement—not replace—the advice of your clinical team.
The Patient Path 