Diane’s Story – Breast Cancer: Part 2–Diagnosis

Silhouette_Flopped


In Part 1—Chemotherapy, we entered Diane’s story as she was undergoing pre-operative chemotherapy for lobular breast cancer. In this post, we will take a close look at how Diane’s journey began a year ago last month and how she is currently preparing for surgery by getting second opinions while her body recuperates from chemo. 

This is a cautionary tale of how her cancer went undiagnosed for eight months.

Also see:

Diane’s Story: Part 3–Surgery

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

As I write this, Diane recently returned from a restorative trip to Mary’s Place by the Sea, where she was treated to three days of rest and recuperation at a beach house, absolutely free of charge. She said it was “wonderful.” She shared the time with seven other women, four with breast cancer. Two others had stage 4 cancers of other types. They did journaling, writing exercises such as describing their mothers’ kitchens, making vinegar with fresh herbs, enjoying healthful breakfasts and lunches at the house and then going out in the evenings for dinner, doing meditation, practicing yoga on the beach, and getting reiki massage. Nutritional and psychological counseling were also available. “The women at Mary’s Place were so overwhelmingly kind,” Diane said. “They have fund-raising activities, and I want to do what I can to help them help others.”

Also, last month Diane attended her daughter’s wedding, which was held outdoors. This was fairly risky for an August day in New Jersey. But, in Diane’s words, “It was a beautiful, perfect day.” And she wasn’t just talking about the weather. I saw a particularly lovely mom-of-the-bride photo of her, and she was beaming during this wonderful celebration. Weddings are always special events, but when you get to dance at your daughter’s wedding while in active treatment for breast cancer, the occasion is exquisitely precious.

Diane has also recently completed her 16 pre-operative chemotherapy treatments. In a recent email, she said: “I’m so glad it’s over! Today is Tuesday, and this will be the first Tuesday in many months that I am not heading over to the cancer center to spend the morning with my fellow cancer patients in the chemo room. Instead, I’m heading into New York to meet my daughter for lunch and fabric shopping in the garment district. I feel like I won the lottery!”

Currently, while her body has a few weeks to recuperate from the assault of the aggressive chemotherapy, Diane is getting second surgical opinions before entering the hospital for surgery early in October. We will discuss the results of those consultations in an upcoming post, so please check back soon for this important information. Her consultation with a second oncologist about chemotherapy appears at the end of this post.

When I saw Diane last month, we talked for a couple of hours about how it took eight months after she first felt the lump in her right breast to get a proper diagnosis. Let’s take a look back in time to see how her story unfolded.

“I Knew I Felt a Lump in My Right Breast…”

A little over a year ago, Diane, then age 57, was in peri-menopause and still having (irregular) periods. (Chemotherapy put her into full menopause.) She had not had a mammogram since 2012 because she has dense breasts, which means they are made up of more fibrous and glandular tissue than fatty tissue. This makes tumors more difficult to visualize. In addition, she has fibrocystic breasts, so distinguishing “good” lumps from “bad” is also difficult. So she continued to do breast self-exams and have regular gynecology visits and decided to forgo annual mammograms. (Important note: This paragraph describes Diane’s risk factors. Read more: Breast Cancer Risk Factors. Also see below for more on mammography, and please read the Postscript.)

Then—she remembers the date—on August 4, 2015, Diane felt a lump in her right breast that seemed unusual. A breast biopsy back in 2000 had turned out to be negative for cancer, and this plus the nature of her dense, cystic breast tissue gave her little cause for alarm. But she called the gynecologist she had been seeing for the past 10 years the next day and asked for a referral for a mammogram. The office said she could get the referral only if she came in for her annual checkup, including a breast exam and PAP test. She was due for her annual visit anyway, so she made the appointment.

During the visit, the gynecologist examined Diane’s breasts and said they were “very lumpy all over” (fibrocystic). She (the doctor) recommended that Diane make an appointment with a breast specialist (surgeon), and Diane did so when she got home. The gynecologist also ordered the mammogram, although the traditional 2D type, not 3D—when Diane called her insurance company, they told her that her plan would not cover the newer, more expensive imaging procedure.

Later, the doctor called and said the mammogram was normal. Then the gynecologist suggested an ultrasound “just to be sure,” so Diane returned to the office for the procedure. She said, “The technician wanded over the area of the lump for a long time—about 10 minutes—and I remember thinking ‘at least this is being thoroughly looked at’ and felt reassured.” (Ten minutes is a long time to endure pressure from an ultrasound wand.)

On August 20, Diane got a call from her gynecologist: “‘The ultrasound was normal. It’s just a cystic area.’ Those were her exact words. I remembered where I was standing when I got the call and everything else about it because I was so happy.” At this point, the doctor didn’t comment on whether Diane should still go to the breast specialist. Diane said, “I assumed—wrongly—that I didn’t need to see the surgeon because I’d had two diagnostic tests saying the lump I felt wasn’t cancer, and the gynecologist sounded very positive when she said it was a cystic area. I got a copy of that ultrasound report, and it said ‘area of cysts.’ So I cancelled the appointment with the surgeon.” Diane went on to say that her gynecologist usually sends follow-up cards in the mail if she recommends further testing to be sure you get it done, but Diane didn’t receive one after the ultrasound phone call. “I assumed it was because she didn’t think I needed to go.”

Reflecting on this a year later, Diane said, “I think we had a communication failure after that ultrasound—the doctor should have said I still needed to go see the breast specialist if that’s what she thought, and I should have confirmed with her that it was OK to cancel the surgical appointment before doing so.” (Please read the Postscript.)

Then in early winter 2016, Diane thought the lump might be growing. She said, “I did not feel the tumor growing throughout the fall and wasn’t particularly worried. After all, I had had two diagnostic tests telling me it wasn’t cancer. But sometime after the holidays, it felt like it was getting bigger. At that point, I made an appointment with the breast specialist, stressing that I had already been told twice that it was nothing and that I just wanted to be sure.”

Diane went for her consultation with the breast surgeon on Wednesday, March 30. “I went in there saying something to the effect that I was probably being neurotic, as I had two different diagnostics telling me it was nothing. But I wanted to get the lump checked just to be sure.” Before the examination, the surgeon said that if it was a cystic area, she could aspirate it and get rid of it during that visit. Then she did an ultrasound and, just like the technologist had done in August, wanded over the area for about 10 minutes. Diane said, “She was totally silent during that time and then switched off the machine. Then she said, ‘We need to get a biopsy of this.’ She looked serious and concerned.”

The surgeon asked Diane to come back the following Monday for a biopsy, as she was going out of town for a few days and it was already 5:30. “I started crying, and she asked if I wanted her to stay and do it at that time. I said yes, and she did.” (Diane said that in addition to being very competent, the surgeon is very caring toward her patients.) During the biopsy, Diane asked the doctor whether she thought the lump could be anything else besides cancer. She named a few things, but, Diane said, “She didn’t sound as though she believed it. I later said to her, ‘You knew as soon as you saw it, didn’t you?’ She said yes. And I think I knew, too, by the end of that visit.”

When Diane left the office, she called her husband and started crying when she told him what had happened. “He asked me to pull over so I could calm down before driving any further. I did that and then drove myself home when I was more composed.” Then she and her husband, who is very supportive, had to wait five agonizing days until the following Monday. On April 4, 2016—exactly eight months after Diane first felt the lump on August 4, 2015—they went to the surgeon’s office together to get the pathology report that would confirm what they already knew: Diane had breast cancer.

The report of the core biopsy of Diane’s right breast (at the 6 o’clock axis) showed:


Each breast contains 15 to 20 lobes of glandular tissue, arranged like the petals of a daisy. Breast Anatomy_MayoThe lobes are further divided into smaller lobules that produce milk for breast-feeding. Small tubes (ducts) conduct the milk to a reservoir that lies just beneath your nipple.

© Mayo Foundation for Education and Research. Click to enlarge.


In short, Diane was diagnosed with invasive and non-invasive (in situ) lobular cancer in her right breast—thankfully, with no spread to the lymph nodes. It was deemed to be stage 2. Invasive breast cancer is cancer that has spread (metastasized) from where it began to the surrounding tissue. In situ (“in its original place”) cancer is cancer that has not spread. Her oncologist told her it was not unusual to have more than one grade of cells in a tumor (see more on tumor grading below).

Diane’s type of cancer is relatively uncommon. According to BreastCancer.orginvasive ductal carcinoma (IDC), sometimes called infiltrating ductal carcinoma, accounts for about 80% of all breast cancers. The National Cancer Institute (NCI) also states that the most common type of breast cancer is ductal carcinoma, which begins in the cells of the mammary glands, and that cancer originating in the cells of the lobules or other breast tissues is less frequent.

View this short video animation from Cancer Treatment Centers of America illustrating how cancer forms in the breast and how breast cancer can spread through the lymphatic system to other parts of the body (which, fortunately, did not happen to Diane). It also encourages breast self-examination as a means of early detection.


Invasive (Infiltrating) Lobular Carcinoma (ILC) – BreastCancer.org

Invasive Lobular Carcinoma_Image_400x522pxBreast profile:
A Ducts
B Lobules
C Dilated section of duct to hold milk
D Nipple
E Fat
F Pectoralis major muscle
G Chest wall/rib cage

Enlargement
A Normal duct cell
B Lobular cancer cells breaking through the basement membrane.
C Basement membrane


Lobular Carcinoma in Situ (LCIS) – BreastCancer.org

Lobular Carcinoma in Situ_ImageBreast profile:
A Ducts
B Lobules
C Dilated section of duct to hold milk
D Nipple
E Fat
F Pectoralis major muscle
G Chest wall/rib cage

Enlargement
A Normal lobular cells
B Lobular cancer cells


Also, Breast Cancer.org says that ILC may not cause any symptoms at first. And it tends to be more difficult to see on mammograms than IDC because, instead of forming a lump, the cancer cells typically spread to the surrounding connective tissue (stroma) in a line formation. In some cases, like Diane’s, the first sign of ILC is a thickening or hardening in the breast rather than a distinct lump, but it can be felt. (Other possible symptoms include an area of fullness or swelling, a change in the texture of the skin, or an inward-turning nipple.)Chemotherapy

The surgeon told Diane she would need to see an oncologist to begin chemotherapy immediately to shrink the tumor before doing surgery, saying, “You’re in for a crappy five months, but you won’t die from this—you’re going to live.” Diane saw the oncologist the next day. (See the details of her chemotherapy treatments in Part 1.)

For more information on interpreting your own pathology report, see Johns Hopkins Breast Center – Breast Pathology. Also see My Breast Cancer Coach for a personalized information guide based on your pathology results.


Dr. Marisa Weiss_BreastCancer.org

Being your own advocate is the best thing you can do on “the patient path.” Watch this video by Dr. Marisa Weiss, president and founder of BreastCancer.org, a practicing oncologist at Lankenau Medical Center, and a breast cancer survivor. She discusses how taking an active role in your healthcare is more important than ever.


A Second Oncology Opinion

As she approached the end of her pre-operative chemotherapy treatments, which began in April 2016, and then started preparing for surgery, Diane decided to get a second opinion from another oncologist. She went to the Abramson Cancer Center at the University of Pennsylvania on August 3.

The UPenn oncologist disagreed with part of the pathology interpretation. After examining the slides of the breast lump biopsy from March 2016 and the sentinel lymph node biopsy from April 2016, she (the oncologist) said that the cells were not as poorly differentiated as had been reported. However, she did concur with the findings of stage 2 ILC with no cancer spread to the sentinel lymph node.


ASIDE—TUMOR GRADE: The American Cancer Society (ACS) provides the following information about tumor grading—a description of the cells that make up the tumor mass:

For invasive cancers, the histologic tumor grade is sometimes called the Bloom-Richardson grade, Nottingham grade, Scarff-Bloom-Richardson grade, or Elston-Ellis grade. Sometimes the grade is expressed with words instead of numbers:

– Grade 1 is the same as well differentiated.

– Grade 2 is the same as moderately differentiated.

– Grade 3 is the same as poorly differentiated. (Grade 3 cancers tend to grow and spread more quickly.)


Interestingly, the consulting oncologist also said she would have advised doing surgery before chemo, the reverse of how Diane was being treated. Her rationale was that lobular cancer grows more slowly than the more common ductal carcinoma, reducing the need to urgently rush into chemo. She also said that chemo was not as effective on estrogen-positive cancer as it is on the more aggressive triple-negative cancer (see Tests to Classify Breast Cancers for more information).

The oncologist went on to say that the only benefit of doing chemo first would be to conserve the breast, but she also said Diane had too much disease for a lumpectomy and that she would need a mastectomy. In addition, it would not be surprising to find satellite tumors during surgery, making the more extensive procedure the safest course. However, she also said that there would likely be no difference in cancer staging or outcome regardless of whether chemotherapy or surgery were done first, although she reiterated her preference for surgery first, followed by an oncotype DX test to make an early determination of whether metastasis was likely.


ASIDE—SYSTEMIC CANCER THERAPY: The ACS provides the following information about chemo and other drug therapies:

Chemo and other drugs, referred to as “adjuvant systemic therapies,” are recommended for women with stage 2 breast cancer, like Diane’s. Sometimes therapy is given before surgery (neoadjuvant therapy) and sometimes after surgery (adjuvant therapy). ACS says that pre-operative treatment is often a good option for women with large tumors to shrink the tumor before surgery, possibly enough to make breast-conserving surgery (BCS) an option—although Diane’s tumor was too large to make lumpectomy feasible. But ACS also says this doesn’t improve survival rate more than getting post-operative therapy. In some cases, systemic therapy will be started before surgery and then continued after surgery.

Click here to read more. Also, for further perspectives on deciding about chemotherapy, see The Conversation – Early stage breast cancer: How to know whether to forgo chemo. (This information is provided for informational purposes only.)


The consulting oncologist also said that lobular breast cancer is frequently missed on mammography because it spreads out like a spider web and often does not form a palpable lump. It is typically diagnosed with magnetic resonance imaging (MRI). Diane didn’t have her first bilateral breast MRI until April 2016, when her oncologist ordered it.

After looking at this MRI, the consultant confirmed that in addition to the known mass in the right breast, it showed two spots in the left breast. As Diane said, “Cancer sometimes develops independently in the other breast. You are more at risk of cancer in the other breast if you have had it in one.” Another thing the doctor said was that she would have done the breast biopsy under an MRI, an option that Diane hadn’t known about.

Looking ahead to post-operative treatment, the doctor went on to confirm that estrogen-positive cancers do respond to tamoxifen. However, as discussed in Part 1, ACS states that tamoxifen acts as an anti-estrogen in breast tissue, but like an estrogen in the uterus, potentially increasing the risk of uterine cancer—something Diane and I discussed after I was diagnosed with it. (See Uterine (Endometrial) Cancer – My Story & More.) Tamoxifen is also linked with an increased risk of blood clots. “However,” Diane said, “even with the increased risk of complications, the survival rate for my type of cancer is higher with tamoxifen than without it, so I am going to take it after surgery.”

As she was about to leave the office and was thinking about what she was going through, Diane asked the doctor, “Why me?” The oncologist’s response was: “Bad luck.”


ASIDE—DIANE TALKS ABOUT HER FAMILY HISTORY, HER LIFESTYLE, AND GENETIC TESTING:

My mom was diagnosed with cancer at age 63. She had Crohn’s disease [inflammatory bowel disease], which put her at risk for the bile duct cancer she died of five years later. And my father had melanoma and colon cancer, although neither was the cause of his death; he died after suffering a series of strokes. There was also a great deal of cancer in my father’s family: four siblings died of lung cancer, one of melanoma. I was always aware that I had ‘bad genes’ for cancer and was always low-level worried about being diagnosed with it.

The way I dealt with that was to live a healthy lifestyle to the best of my ability. I maintained a healthy weight, exercised, ate sensibly, took my vitamin D every day, stayed out of the sun, watched my alcohol intake, and so forth. My brother called me the ‘poster girl for clean living.’ But my father’s family members were drinkers, and all of the lung cancer siblings were lifelong smokers. So their  lifestyle had motivated me to develop healthy habits. Also, I saw a geneticist after I was diagnosed with breast cancer, and she said that most of the cancers in my father’s family were ‘lifestyle driven.’

The geneticist ordered a fairly expensive genetic test, and we weren’t sure my insurance would cover it. When she submitted the request, she included the history of melanoma on my father’s side of the family. Apparently, the marker for melanoma and breast cancer are on the same gene, but it becomes melanoma in men and breast cancer in women. Because this might put me at greater risk for breast cancer and recurrence, my insurance did pay for it. Recently, I received the results. To my astonishment, they showed that I did not have any one of the 35 gene mutations associated with the various types of cancer I was tested for! I was pretty floored by this surprising, but very good, news. In retrospect, I think all of my lifestyle efforts gave me a false sense of security.”

See more on these topics in Breast Cancer Risk Factors. Also, please read the Postscript.


Sometimes we just don’t know why things happen to some people and not others. But it’s always a surprise when it happens to us, leaving us with a sense of unreality. Still, when dealt a harsh hand, the best thing to do is to play it. And Diane is very much in the game.

Checking Back in with the Treating Oncologist

After the second-opinion oncology consultation at UPenn, Diane returned to see her treating oncologist to discuss the consulting oncologist’s opinions. Her oncologist reassured Diane that the approach he was taking was valid and that breast conservation is not the only reason to do chemo first—in his experience, he has found that doing chemo first yields a better outcome. He further reassured her that the chemo protocol he used—4 doses of combined Adriamycin and Cytoxan (AC) and 12 of Taxol (see Part 1)—offered the best survival rate. Any other treatment protocol would be too risky without more data, he said. He hadn’t ordered an oncotype DX test, but had ordered another genetic test before beginning therapy that did not show any markers for breast cancer. (However, see the Aside above.)

But one unsettling result of this conversation was that her doctor agreed with the UPenn consultant that Diane would need a mastectomy, not a lumpectomy. Early in her treatment, he had indicated that a lumpectomy might be feasible. Now he said that it was not—and actually never was. Diane attributes this to his not wanting to overwhelm her with worries as she was starting chemotherapy. She also acknowledges that earlier she may not have been ready to receive such hard news. “Looking back on those early days now, I can see I really was in shock and not thinking as clearly as usual.”

More on Mammograms and Breast MRIs

Reflecting on the diagnostic process, Diane said: “I stopped going for regular mammograms, but not because I thought I had no risk of breast cancer. However, I wasn’t especially worried about it, either. I had a lot of things going for me that were supposed to lower my risk of breast cancer—I had given birth to three children, the first when I was 27; I breastfed; I was a lifelong exerciser; I was never overweight; I took vitamin D; I had no family history of breast cancer.” (However, see the Aside above about Diane’s family history. And please read the Postscript.)

Diane continued: “The reason I stopped going regularly for mammograms was because every time I got one I was told my breasts were way too dense to see what was going on in them. Also, I had heard that it is a pretty poor test with lots of false positives and negatives, but that it’s the best screening tool we have. I did get the other cancer screening tests, though, including a colonoscopy, regular PAP tests, and a skin check for melanoma. And I did breast self-exams.”

It’s hard to imagine anyone being more aware of her health or more diligent in self-care than Diane. Yet . . . here she is, preparing for breast cancer surgery. As the consulting oncologist said, this was just “bad luck.”

Still, in thinking about what else she could have done to get an earlier diagnosis, Diane summed up her vital, hard-won views on breast imaging: “Just because mammograms didn’t work for me doesn’t mean they have no value. I have spoken with numerous women since this all began whose cancer was diagnosed via a mammogram. And cancers diagnosed that way tend to be smaller and more contained. I think they should be part of a woman’s self-care- and -prevention program. In hindsight, what I should have done instead of just giving up on and skipping mammograms was fight with my insurance company for coverage of bilateral MRIs, which would have picked up my cancer. I urge women who are told that mammograms are ineffective on them to push for higher-level screening—3D mammograms, ultrasounds, and MRIs.”

For further discussion of breast imaging techniques, see

Completing Chemo and Preparing for Surgery

After that conversation with her treating oncologist, Diane thought back to something else the consulting oncologist had said—that all things considered, she was receiving “excellent care.” She also felt reassured by how her treating oncologist responded to her post-consultation questions.

Still, during the interim between the recent completion of her chemotherapy and her upcoming surgery, Diane is very busy getting second surgical opinions at the Abramson Center at the University of Pennsylvania and Temple Health Fox Chase Cancer Center in Philadelphia. (The local breast surgeon who did her biopsy follows the Fox Chase protocol.)

Diane and I plan to get together this week for coffee to discuss the results of these consultations, so please check back soon to read the expert opinions regarding surgical options for lobular breast cancer and the route Diane chose to take.


Postscript: 

Both Diane and I agree that self-education plus total, open communication with your healthcare providers are essential elements of your care. Also, we both strongly encourage women to follow a healthy lifestyle, recognizing that it is a commonsense practice to enhance your life, although not a guarantee against disease. Early Detection

Finally, even though mammography did not help in Diane’s case because of her dense, fibrocystic breasts and the lobular type of cancer she developed, we both urge women to follow the recommendations of their doctors regarding getting regular mammograms and/or other tests and doing breast self-exams. Early detection is your best defense against cancer. 


Click for a Comprehensive List of Breast Cancer Resources

Also see:

Diane’s Story: Part 1–Chemotherapy 

Diane’s Story: Part 3–Surgery

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.


count-your-courage

2 thoughts on “Diane’s Story – Breast Cancer: Part 2–Diagnosis”

  1. Hi:

    WOW, I am absolutely amazed at your writing skills!!! This story of Diane and her ongoing progress is awesome!!!

    Her story is so interesting to read I couldn’t stop!! She has really gone through so much and is so brave. I am sure it will inspire others not to give up. I sure hope everything turns out for her.

    Please keep up your wonderful work and keep me informed on Diane.

    Liked by 1 person

    1. Thanks so much.

      Diane had her “decision surgery” today to determine how they will proceed next month. Waiting anxiously to hear.

      Yes, I will of course keep everyone informed of her progress. We’re working on Part 3–Surgery now.

      More soon. Please encourage others to read Diane’s story–it contains important information, as well as inspiration.

      Like

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