No. 07: The Diagnosis

One Regular Mammogram - Check,

One Magnified Mammogram - Check,

Two Biopsies (One on each side) - Check, and Double-Check

One MRI - Check

One MRI Biopsy Scheduled - Check TBD

It was now time to meet the Breast Doctor/Surgeon. It was recommended to mark your calendar for at least 2 hours as the Nurse Navigator, who meets you first, will review the binder that explores the journey you are about to undertake. The second hour with the Doctor entails a breast exam, a review of the results of all procedures, and the options before you.

By now, the family, my center of support, was completely on board. The daughters, who have their own text messaging communication set up, had decided that someone would always be with me to listen and take notes. The baby, who currenlty lives with us and WFH, I thought would be the main contact. Surprisingly, since the oldest was on a business trip, the group had decided that two of the three would be my ears.

My entourage established: husband, middle daughter, and the baby, will attend with me. We arrived at the hospital in plenty of time. The two daughters armed with their laptops. And as it turned out, had designated duties which you will learn about later.

As we crossed the parking lot, my husband took my hand. I looked at him, and he was crying. I stopped short, yanking his arm back.

ME: NO! You cannot go into this building crying. If you are crying, you stay in the car. This place is difficult enough as it is—as you will see. I have promised myself I will not cry, nor will you.

The girls looked shocked—and also snickered—as their Dad was known to cry at the drop of a hat—when they took the train home or many of the smallest of family events, including giving the dinner blessing.

ME: Women will be inside facing all sorts of challenges, and some of them may be crying. I am warning you. I do not want that. (Yes, I am a hard ass, but I am not one to cry in public. The shower always, public NOT)

Wiping his face, hubby agreed, and we proceeded inside. The entourage took seats on the couch while I registered. Oh yes, the same questions, Insurances, Medicare, and yes, I will pay if no one else does. I then took my seat to the side of the couch facing the other loveseat, family lined up to my right.

Sitting on the loveseat directly across from me was a woman, red-rimmed eyes, staring at her phone although she was not swiping left or right. Actually, she was mostly staring at the floor. I looked at my family. All three saw the same thing.

The girls decided to discuss the travails of work and opened laptops. My husband looked at me, then the woman, and back to me. I smiled at him and gave a little nod. No need to say anything, we were in agreement. I watched the TV. The woman was soon called into the inner sanctum.

The next nurse that came into the room called my name. We all stood at the same time, which at that time of day, took away half of the waiting room. The nurse laughed. "You have a crew with you. I will need more chairs in the conference room."

The conference room was smaller than an exam room considering it had a table and 4 chairs. The nurse grabbed a rolling chair from the registration area and brought it in. The girls and I took a seat at the table with the nurse, and hubby, taking the rolling chair, sat to my side.

The Nurse Navigator brought out a thick, three-ring binder. "I am your nurse navigator. Any questions at any time, I will be your conduit. Here is my card with email and phones, and feel free to use any method at any time to reach out to me. This binder will be your guide as well. It is broken into various areas." She started to thumb through the tabs from support groups and pre-op protocols to PowerPoint outlines of self-care, operation day, and post-op information. The tabs were many. She took a few minutes. "The binder will be your guide. And do call or email if questions. I am not on the portal, but I will get to the doctor any questions and concerns as soon as I read or hear them."

Next, she brought out a book. A textbook. The complete book of Breast Cancer. This book describes all the various types of cancer. She already had the pages marked that pertain to me. "This shows you a healthy breast duct. Here is a duct with cancer—In Situ. The cancer is contained in the duct. And this is one where the cancer has invaded and broken through the duct. According to your report, you are still contained in the duct—thus makes it Stage 0. One side is Grade 1, and the other is Grade 2. There are three grades. The higher the number, the more concern. Did you know a cell grows and divides every 100 days? You will be able to read all about it as you will have this book as well. This book will also be your guide."

In my mind, upon learning the 100 days, I began to think... So, 100 days, were all these tests done at Day 99 or day 2? We have now expended a month of tests... did they split? Are we resetting the clock to 0, or are we done with the first round and are now on the second 100 days?

My thoughts were interrupted. "The doctor will go over in more detail. I will let her know you are ready."

MEDICAL vs. EMOTIONAL

The nurse left, and soon the Doctor entered. "Well, we have a full room. Who do I have the pleasure of speaking with today? I assume you are the husband, as you are the only male here."

I must say, the doctor put everyone at ease. And then she looked at me and said, "Mom, we are going to another room to have a breast exam. We will be right back."

The Nurse Navigator awaited outside, escorting us down the hall into an exam room. I was given the perfunctory half gown, and they left while I prepared. OK, thought: If you are going to open your shirt to the world anyway, what is the purpose of leaving while you take the top off for privacy? Just askin'.

When they returned, it was for a breast exam. Both Doctor and Nurse said at the same time, "The left is bigger than the right." Confession, I did notice that a few months ago and thought nothing of it.

Then I was placed on the bed, and the doctor did a manual breast exam. The doctor asked a few questions: "Is that the entire family here to listen?"

ME: NO, there is a third, the oldest. She is at work in NYC.

DOC: I guess she will have to get the report from her sisters.

ME: NO, she already is in the loop. They have been keeping in touch with her since we entered. One daughter—the middle—is typing notes, and the baby is texting her sister. They are connected.

DOC: You have a great family. (I DO!) What does the one in NYC do? (For privacy, I will not answer here, just to say that there was a child of those in the room who I would soon discover was graduating and who could apply for a job there when I send the link)

Finally, while she did her thing, she ended with, "I do not feel anything."

ME: I do them regularly myself in the shower, I never felt anything. That is why I am so shocked that we are coming this far.

DOC: We shall discuss with the others. Let's go back to the room. Get dressed and come on out.

Again with the privacy thing to dress and undress.

Back at the conference room, the entourage looked anxious as we entered. I smiled. They kinda smiled. The Doctor took her seat at the head of the table.

The results of each test were reviewed—in order—as to how we got here. And then it started, what was happening deep inside me. The DCIS—Ductal Carcinoma In Situ. It's in the duct. She drew a healthy circle with circles inside. Then a circle with stuff in it. And then added arrows—if they invaded the rest of the breast. Our stage is 0 as all indications were it was contained in the duct. The levels are one for the Left side and two levels for the right, meaning 1- low level, 2- intermediate; we have not reached the high level. That is good.

Now let us look at the hormone receptors. It was here that I listened but did not really comprehend because the word hormone kept being repeated. My brain went to two things: One, we need to do the drinking game. Every time she said Hormone, DRINK. My other thought was the old joke: How do you make a hormone? Answer: Refuse to pay her.

The next step was all the options.

THE LUMPECTOMY: Taking pen to paper on the flip side of the paper where she drew ducts, we now were getting drawings of breasts. Place a reflector (before surgery), locate the lump. At surgery, remove the lump. Biopsy of the sentinel node. I really tuned out for the sentinel node. You inject the nipple. You are numbed, of course. You still have mammograms. You will have regular exams and take medications. You will have the drains as well. Need to note that because your MRI had a suspicious area, we need to do an MRI Biopsy for further study. That has been scheduled for you; HOWEVER, you will not need it should you opt for the Mastectomy, as the breast will be entirely removed.

Which brings us to... the bottom half of the page.

THE MASTECTOMY: Both breasts removed (or one if that is your diagnosis). Lymph nodes will be removed. NOTE: you will go to Nuclear Medicine for a procedure to identify them, and they will be biopsied and pathologized (my word). AGAIN—you will have to read later about that experience. You will have the drains, JP Drains that you need to empty 2-3 times a day. And keep a record. She turned to that page in the 3-ring binder. There were 20 pages, each with 4 weeks on each page. Ok, I did need two pages—one left and one right. And if I opted for one of the reconstructions, I may have 2-4 more. That reconstruction takes fat and muscle from your stomach area—hey—added bonus. But 20 pages of 4 weeks each?? Would I need this many pages??? OMG!! But she continued.

Also, we need to know about reconstruction. The plastic surgeon will be standing by in the OR with the Breast doctor ready to begin the process. Now I can make this various ways. One, just have it set that in the future you get reconstruction. Otherwise, the plastic surgeon will start the implant process. You will need a consult with them first. Once you decide, of course.

For the lumpectomy, we perform the procedure as an outpatient. For the mastectomy, it will be an overnight stay, longer if you do not fulfill the requirements: Pee. Eat. Walk. And the walk means able to do things on your own. I had a hip replacement 5 months before, CAN DO!

Now for your particular case, Chemo is off the table. But Radiation and a pill for 5 years may be in your future. You will have regular exams. We will not know until we get inside and get the pathology report.

We also offer Genetic Counseling. With your history of your mother having breast cancer—at the same age as you, and then cervical cancer later, I would strongly suggest it. It would help your daughters to know. And with the history of Mom and Grandmother, I would say they should get the baseline mammogram when they are 35. And Insurance pays for the testing. It does take a few weeks after the blood test. Then they will meet with you for the report. They send you a fact sheet to complete as best you can with history of your family. Ages, deaths, reasons for deaths. Fill it out as best you can. We shall let them know if you are interested.

Any questions? Well, luckily my entourage had done research and asked many pointed questions which she answered promptly. I must confess, having my kids there as my ears in all the meetings, I was glad because I had none. I am the type that says let's get it done and cross each bridge as you get there. In the Medical Profession, that does not seem to be the case. They want to cross specific bridges. Plus, the way my brain works, or does not work, I just kept thinking weird thoughts. The doctor answered each query and was impressed with the questions these research Project Managers had.

Part of the research was that the Middle daughter's boss's mother had gone through the same cancer diagnosis and was cancer-free for a few years. The Baby (and Me) knew someone who went through breast cancer starting with a lumpectomy, followed a few years later with a double mastectomy (ok Bilateral) and reconstruction. Both were armed with questions to ask and some that were added once the procedures were explained.

The Doctor returned her attention to me. "I am not going to ask what your decisions are now. This decision is a MEDICAL vs EMOTIONAL decision. I want you to take your time, take a few days, and let us know then. Read the books, talk with your family, whatever you need to do to make your decision. Then let us know."

I already knew what I wanted. Genetics. Mastectomy. NO reconstruction.

I will take a few days to make the decision.