I’ve Been Diagnosed With Two Different Cancers—This Is What I’ve Learned
(Prevention) — I expected to be diagnosed with breast cancer ever since my identical twin sister Karen started treatment for the disease seven years ago. It was only a matter of time. And while I wasn’t happy to hear the words, I felt ready for the fight—again.
You see, I’ve been diagnosed with cancer before—a rare, incurable blood cancer called multiple myeloma, and I wasn’t expected to live more than three years. That was more than 20 years ago. Since then, I’ve become a healthcare pro who shepherds patients through the system to find their cures. So when a small spot on one of my regular screenings turned out to be early stage breast cancer, I said to myself: I’ve got this, it’s what I do. No problem.
But as I painfully re-learned with my second cancer diagnosis, cancer can be humbling. Even for a cancer expert. Even for someone who has been through this before.
My first cancer diagnosis—and my sister’s
When I first started battling cancer decades ago, I didn’t know what I know now. But after years of research, difficult decisions and grueling treatments—induction therapy, chemo, stem cell transplant with my sister, maintenance therapy, relapse, infusions, side effects—I learned a fair amount about how to beat cancer. I also gained a great deal of hard-won wisdom about how the disease burdens friends and family along the way. Mine were there for me no matter how difficult the treatment, or the patient. And I could be difficult. No one knows that better than my sister.
Karen was my first call after being diagnosed with myeloma. She calmed me down when my test results were bad and bore my rage when I vented “Why me?” And then, when my myeloma became active and aggressive, she became my stem cell donor.
Then in 2014, eight years after giving me the life-saving gift of a stem cell transplant, Karen was diagnosed with breast cancer. Stage III. It was my turn to pay her back.
Together, we searched the internet, called every doctor and patient group, read every medical publication. Again, many decisions and years of debilitating treatments: surgery, chemo, radiation, and at least five years on therapy. Even today, she still warriors through the scans, the test results, the fear.
Facing my breast cancer diagnosis
So how would I address my new diagnosis? I followed my tried-and true playbook, the one I’d used with my sister and refined with an untold number of other patients: Google wisely, get a second opinion, find the right team, check your coverage, and always ask for the most current tests and treatments. My doctor laid out the options and encouraged me to speak with other doctors. One said low-dose tamoxifen. Another said lumpectomy, with treatment and/or radiation. Another said double mastectomy: “You spent 20 years of your life trying to cure one disease; in one fell swoop you can cure this one.” In the end I had all the data and science in the world. But no clear answer. The decision would be mine. The decision would be personal.
I reached out to family, to friends. My sister and I spoke endlessly about the toll of her ongoing treatment, from shortness of breath to the neuropathy that feels like shooting needles in her feet; having endured years of treatment issues myself for myeloma, I didn’t know how many more I could bear, let alone more scans, more false positives, more biopsies. More restless nights and honest entries in my journal.
I spoke with friends about the burden I had put on them. On my husband, my children. I’d been riding the cancer roller coaster for 25-plus years. I wanted off. And besides, having lived through a stem cell transplant, I figured double mastectomy would be easy (despite my doctor’s warning otherwise). Surgery on Tuesday, Mom’s birthday on Sunday, back to work on Monday. I put make-up on before surgery so I would look bright and healthy in a quick photo sent off to our children. This time I wouldn’t burden anyone.
I was wrong. The surgery was harder than I imagined. I don’t know how I could have managed without my friends to bring my favorite ginger tea, my kids to cook and walk the dog when I still couldn’t hold the leash, my husband to drive me 90 minutes to each appointment, sit in with the doctor, and give me (very gentle) hugs when I needed them, and my sister to just agree it sucked—“no sense sugar-coating.” And then there were the Zoom calls. Putting on my game face when I could barely reach for my lip gloss and concealer. Going into surgery I felt strong, in control. Coming out, I felt small. Full of doubts. Beaten up.
Sitting in her office a week later, I asked my doctor if I’d made the right decision. Her response: There is no wrong answer, there is only the right answer for you.
What everyone diagnosed with cancer should know
After more than 25 years of curing my own cancer, and advising countless others how to cure theirs, here’s what I know now about cancer:
Your greatest hope of curing cancer is catching it early. So know your risks. Talk to specialists. Get tested, keep up with your screenings, and consider genetic testing if you can.
What you do about your cancer is up to you. No shame, no judgment. Do what you can to get the facts and understand your options. Learn from your doctors. And those who have had your same cancer. Have conversations. They help you decide what’s right for you.
Everyone needs someone—a partner, a sister, a child, a friend. If you have cancer, find your someone. Be a burden. And if someone you know has cancer, raise your hand and be that someone for her.
My someones make me know I chose right—for me. That’s what friends and family do. They are your sounding board to help you decide, and then they give unconditional support for that decision, and see you through no matter how hard the journey might be. Their comfort is your cure.
When facing cancer, even a cancer expert needs help.