Days after the biopsy we sat in Gaye’s OB/GYN office for the results. Dr. T confirmed that the lump found in Gaye's routine mammogram to be breast cancer. There was every indication of lymph node involvement. She also said it was early-stage.
I won’t say the floor fell out from under me but I did keep a tight hold on the chair.
Cancer. But Gaye chances of survival were excellent based on early detection and treatment options. Chances. Dr. T’s urgency in calling a surgical oncologist was not lost on us. When she gave us the address and told us to go—that day—we went.
Caregivers—it’s about her, not you
That diagnosis will knock you back on your heels, even if you think you’re prepared. Still, what you feel is NOTHING compared to what the diagnosis will do to her. It’s important that you pull it together. She will need you to navigate the details, to keep track of the parking-garage ticket and the medical insurance cards.
And the fothermucking referrals...
Gaye called our primary care physician, as I drove. However the PCP had relocated her practice a good 80 miles from us. We had an appointment with a new PCP but that appointment wasn’t for another three weeks. Of course we needed a referral in the next 15 minutes.
I’d love to say this is where the heavens parted for us and the barriers fell but this is a factual account—right down to going to the wrong office—and medical office staff is still medical office staff.
Use your energy and your time to her advantage
Gaye didn’t need me to rant, rave, or pitch a fit. She needed me to drive—to the correct office. With no time, (and certainly not three weeks) to spare, we went on without a referral.
“Well begun is half done,” Aristotle
Between the mammogram and the ultrasound and again between the biopsy and office appointment with Dr. T, we had long days with our thoughts. Rather than wallow in fear, we used the time to put things on paper. Getting organized will help you both process and be ready.
Use the time to get it together:
- Write down the questions.
- Find your insurance cards.
- Make a list of all medications and SUPPLEMENTS with the dosage.
- If you have a smartphone, take photos and you’ll have your pharmacy number and address, too.
- Secure referrals, as soon as you can.
- The nurse navigator I mentioned in the previous article may be able to help, which we found out later.
Make peace with process, because there is always another form
We finally arrived at the surgical oncologist’s (corrrect) office, we navigated a comedy of errors including a large fee, (because we were unable to get the referral) and a defensive screen worthy of the NFL. Finally, we were shown into the examination room. The clinical staff was WAY more professional and compassionate than the office staff. Still, all the professionalism and compassion in the world doesn’t stop the onslaught of paperwork. The physician’s assistant asked Gaye the same questions that she had answered on the online form.
Zero-to-sixty FAST
Dr. B arrived, like a rockstar. As I previously noted, Gaye knew Dr. B from mutual time at St. Joseph Hospital but had no expectation that Dr. B would remember her. To our surprise, Dr. B was genuinely delighted to be remembered. Her warm greeting was a safety line above the fear and high emotion.
Dr. B went from warm-greeting-to-matter-at-hand urgency in an instant. She also named the cancer.
Invasive ductal carcinoma
One of the most common types of breast cancer and highly treatable. The lymph node involvement complicated things but Dr. B exuded enthusiasm. She assured us that the oncologist that she worked with, Dr. L, (who made her bones at M.D. Anderson) would manage radiation and, if necessary, chemotherapy. It all looked promising. Then Dr. B reviewed the patient information/history form.
Gaye’s family history of pancreatic cancer changed everything. Dr. B raised the specter of BRCA (BReast CAncer gene mutation) as well as the possibility of triple negative status, (aggressive with a high recurrence rate). Dr. B said Dr. L would consult with us but the first step would be a DNA test to screen for BRCA genetic mutation. With professional precision, she stated if Gaye tested positive for BRCA, she would recommend a double mastectomy and strongly suggest Gaye accept it.
A step ahead of despair, Dr. B said if Gaye tested negative for BRCA, then she would offer a lumpectomy. She explained that she would do a sentinel node procedure on her lymph nodes after the breast procedure. Both the tumor and the lymph node dissection would be performed in the operating room.
Proactive vs. Over-Reactive
Prepared for the worst, Gaye ask, even in the event that she tested BRCA negative, if a complete mastectomy might be more effective than a lumpectomy. Dr. B explained that in four-plus-decades of research there is no data to suggest greater efficacy for a mastectomy in the absence of BRCA or triple-negative status.
“I can do a complete mastectomy if you insist but there is no measurable benefit over lumpectomy and radiation and/or chemotherapy for your type and stage of cancer.” -Dr. B
I offered to leave the room during Gaye’s physical exam. Which Dr. B accepted. Again, it's about the patient.
Respect comes back ten-fold, pay it forward
There are documented cases of men extending abusive/controling behavior to their spouses' healthcare decisions. Physicians are sensitive to this. But Dr. B simply directed me to step around the curtain.
After palpating the lump and the lymph node, Dr. B stated she would have a plastic surgeon in the operating room on the day of surgery to reconstruct after the lumpectomy and to close. She explained that the plastic-specialists were simply better at filling in tissue and scar-minimization.
This is a HUGE deal for African-American women:
- Keloids (hypertrophic/large protruding scar tissue) is a condition prominent to African Americans.
- Less than 30% of all African American breast cancer patients are ever even offered reconstruction.
The difference between doctors
From Dr. B, we met with Dr. L, the oncologist. While Dr. B managed the surgical part of Gaye's treatment. Dr. L would manage the overall cancer-treatment strategy. That includes radiation, chemotherapy, (if necessary) and post surgical care.
My responsibility was to take notes. The medical terms, (Gaye is a nurse and still had to look up a lot of what was said) the time-frames, and information overload is crazy-overwhelming. Also, the most compassionate doctor has multiple patients waiting. They tend to go fast and they are not inclined to repeat themselves.
Get organized, I can’t stress this enough. You don’t want to get in front of the doctor and start digging through a stack of envelopes, the back of receipts, or napkins for the questions you wrote down but don't have organized.
Plus, you need to write down the answers.
We chose the Rocket Book. Once marked up, pages can be loaded onto your smartphone or your computer. Here’s the cool part, you can then wipe the pages clean and start over again. You’re not likely to confuse it for your work notes or your kid’s notebook.
I filled up four pages and then Dr. L, enchanted by the Rocket book, took it from me and began to note everything she said, even drawing diagrams of the cancer cell.
That book has been indispensable in researching terms and reviewing what was said. Not the least of which is stopping some panic attacks when research turned grim but really didn’t apply to our situation. This is a long road. Starting off with an organized system eases the journey.
“If you stay ready you don’t have to get ready,” Bob the Drag Queen.
Please note: we received no compensation from the makers of Rocket book. We bought it because it looked like a good solution for us. Someone else may opt for an iPad or even notes on a phone. Which ever organizational tool you choose, do get organized and stick with it.
All photos belong to me and are used by my permission—which I think is damn decent of me.
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