2023 Was Not the Year I Was Expecting

Note: I am not a doctor and don’t play one on TV. My thoughts in the post below are based only on my personal experience. My daughter—who is a first year medical resident—would want me to encourage you to consult an actual physician about your personal healthcare concerns and questions.

Anyway…

Last summer—just 14 days before Steve and I were to leave for our epic two-week hiking trip to the Land of the Midnight Sun (Norway), I was whisked into a very extensive surgery instead.

The oncologist said, “My calendar is pretty full but next Wednesday is my birthday—which I have off—so let’s do your surgery then. I think it’s an auspicious day, don’t you?”

I was still trying to process the fact that I was someone who had an oncologist.

If you’d have shown me a list of all the diseases I might get someday, I probably would’ve ranked cancer as least likely.

We had no family history of cancer.
I ate healthy.
I was not overweight.
I exercised consistently.

In short, I thought I was healthy. That it couldn’t happen to me.

But it turns out that for many people, those things don’t protect us from getting cancer (although they may reduce chances of a recurrence).

The National Cancer Society says one out of two men and one out of three women will get cancer in their lifetimes. (Men: Please go get your annual prostate exam. Early detection is critical for prostate cancer. Steve’s father died of it when it moved into his bones. Don’t mess around!)

In my case, I learned that I had stage 3 ovarian cancer due to a series of random DNA mutations. Random DNA mutations!

Ovarian cancer is particularly deadly because it’s rarely discovered until it’s metastasized and advanced. Symptoms can be vague.

And that’s why I decided to share my experience here. While I tend to be pretty private about medical stuff, a recent chance encounter with a neighbor about my symptoms resulted in her own visit to a gynecologist where she too was diagnosed with ovarian cancer.

She’s just a few months behind me now on the surgery-chemo-maintenance therapy journey. That chance conversation may have saved her life.

So I figure if sharing my experience encourages one other woman to make an appointment with her gynecologist, it’s worth it.

Common Symptoms of Ovarian Cancer

The Ovarian Cancer Research Association (highly recommended for more reading) notes that the most common symptoms are bloating, pelvic/abdominal pain, difficulty eating or feeling full quickly, and/or urinary symptoms (urgency or frequency). You could have several of these symptoms or maybe none at all.

Less common symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation, or menstrual irregularities. See what I mean about vague?

Any of these symptoms could also be from a non-cancerous condition.

I’d had low-grade bloating for more than five years, right around menopause, along with spotting after my period stopped. I’d mentioned all this to my gynecologist twice and had two pelvic ultrasounds which showed nothing so she chalked it up to hormone changes.

I wish she’d also ordered a simple CA-125 blood test. If that marker had been elevated, it would’ve been an important piece of the clinical picture. I should mention, however, that CA-125 is not typically used by physicians for ovarian cancer diagnosis…only for follow-up during and after treatment.

That’s because it’s not considered a reliable indicator for diagnosis. A perfectly healthy woman could have an elevated CA-125. This is why it’s not included with PAPs at annual exams although some high risk patients are screened bi-annually with it anyway. I wish someone would have done that for me based on my symptoms since my CA-125 turned out to be elevated 45 times normal by my surgery date!

Treatment

It wasn’t until I was so bloated that I could hardly eat or drink in May 2023, that a third transvaginal ultrasound showed the presence of cancer cells in my peritoneal cavity (abdomen).

The bloating turned out to be due to fluid-build up from the cancer cells, a condition called “ascites.” (Not everyone with ovarian cancer gets this, however.)

It was what brought me to the emergency room where they had to drain it with a massive needle to get some relief. Then I finally had a CT scan with contrast where they diagnosed it as ovarian cancer.

And even still, they couldn’t be sure that the primary source of the cancer was my ovaries—it can be in the fallopian tubes, peritoneal cavity or other places in the pelvis—until my surgery.

My opinion? If you suspect ovarian cancer and your doctor has already ordered a transvaginal ultrasound, ask for a CT scan with contrast just to rule it out.

During the surgery, they genotyped my own cells and the tumor cells to learn what kind of tumor I had as there are different kinds of ovarian cancer that merit different therapies.

I was diagnosed with high grade serous ovarian carcinoma (the most common type). The tumor was HRD positive and BRCA2 positive. (These mutations were tumor-specific; I don’t carry them. This means I didn’t pass this along to my daughter. Seriously grateful for that.)

Chemo Sucked

Typically, patients with ovarian cancer will undergo a combination of surgery (where they “debulk” the tumors, ie. get as much of it as they can without damaging any vital organs) and chemo. Some patients will get chemo first to shrink tumors, then have surgery, and then do more chemo.

I was very fortunate that my surgeon was very, very skilled and removed all visible cancer. (If you’re ever in the unfortunate position of having this surgery, be sure your surgeon is a gynecologist oncologist. You don’t want a general surgeon or gynecologist spreading the cancer inadvertently.)

It was a “big, big surgery”—as my doctor explained— with a vertical incision from my sternum to bikini line and I spent a rather rough two weeks in the hospital and ICU recovering. I’ll skip over the various complications I experienced there as everyone is different but let’s just say this surgery is one I hope you avoid…and a 7 to 14-day hospital stay is normal.

One month after my surgery, it was off to chemotherapy. It can take up to a year to recover from the surgery I had and I definitely didn’t feel up to starting chemo four weeks later. But after reading up on and considering alternative cancer therapies, it seemed important to do it.

That said, my body has always been unusually sensitive to medications and chemo knocked me out more than most. (I have friends who worked while having chemo treatments! Everyone is different.)

Probably the most important—and hardest—lesson I learned during this cancer journey was to speak up when something wasn’t working for me.

I believe a good physician partners with their patient in an ongoing dialogue that weighs options, side effects, and the patient’s desire for quality of life. My really excellent surgeon turned out to be rigid and rather uncompromising when I struggled with chemo. His distinct lack of compassion made me really anxious. So it soon became clear that he wasn’t the right person to walk the rest of this journey with me.

I’m someone who takes a lot of pride in my follow-through so his passive-aggressive threats made me feel stressed, anxious, and ashamed when I couldn’t tolerate chemo.

Did you know you can request (if you have the right oncologist) chemo at a lower dose? Or elect for weekly treatments at one-third the dose? They work out to the same dose over three treatments as one treatment every three weeks but are so much less toxic to your body. By moving to weekly treatments, my hair grew back and I put back on all my weight! During chemo.

The medical literature also supports this approach as equally effective. It’s only typically offered, however, to patients who are really struggling with chemo which I think is a shame.

While it’s true that weekly treatments (and blood tests) are one big pain in the butt, the reduced toxicity load reduces a patient’s chances of long-term side effects from chemo. (So happy to report I have none.)

Fire Your Oncologist if They Won’t Partner with You

It’s a vulnerable time when you’re fighting for your life and the last thing I wanted to do was find a new doctor and fire my excellent (but rigid) surgeon. But thanks to a friend who really encouraged me (Hi Wendy!), I did it and it was the best decision I’ve made since my diagnosis.

Instead of dreading my oncology appointments, I almost look forward to them now. My new oncologist is kind, positive, and really lives up to his claims of treating each patient like he would a family member. He’s also got impeccable clinical credentials. I’m incredibly grateful!

So when he saw that after completing around half of my weekly chemo treatments I was too fatigued to walk without a wheelchair or pretty much lift my head off the pillow, we agreed I wasn’t tolerating chemo and stopped treatment.

Since my scans looked clear, we moved on to maintenance therapies instead. Ovarian cancer can be highly recurrent so you need to do whatever you can to minimize the chances. Fortunately, my CA-125 blood marker plummeted after surgery and has continued at rock bottom normal range in the year since.

Also fortunately for me, my BRCA2 tumor type made me eligible for a two year medication maintenance therapy which—in combination with non-chemo infusions of another med—increase my odds for long-term survivability markedly.

How I’m Doing Now

I’m happy to report that after three sets of scans in 2024, I’m officially six months in remission. All my extreme fatigue of more than 8 months is gone! I’m back on my bike and daily walks which feels like the most incredible gift.

It was bleak there for awhile on the sofa but friends and family kept me bucked up with weekly biscotti deliveries, postcards, funny memes, calls, and visits. And I got through it.

These maintenance therapies come with their own not-so-great side effects, but again, in working with my oncologist, we’ve been able to adjust dosages to make them more manageable.

This past spring I was able to attend a wedding in Mammoth, CA, attend our daughter’s medical school graduation in Irvine, CA, and had the most wonderful 60th birthday celebration. I’m looking forward to some stateside travel soon!

I Wish We Could Put Patients at the Center of Care

I think one of the most challenging aspects of this cancer journey has been the divide I’ve experienced between traditional Western medical treatments and alternative treatments that they use in other parts of the world, like Asia and Europe.

Most oncologists follow a very strict protocol for how they treat cancer with evidence-based treatments. And evidence-based medicine is good, right?

But for patients, it can feel like you’re being processed through a medical system that is not set up to accommodate you—as a unique individual—or put you at the center of treatment decisions. It feels like a never-ending calendar of blood lab appointments, doctor appointments, chemo appointments, and scan appointments…without a lot of regard for how well you’re jumping these hurdles.

There are so many promising therapies that some cancer patients are using as adjunctive therapies with chemo to make it more effective and alleviate side effects. For example, acupuncture reduces the likelihood of long-term peripheral neuropathy (tingling or numb sensations in your limbs) that are common during and after chemo…or certain strains of mushrooms widely used for cancer patients in China (and no, I’m not talking about micro-dosing or psychedelics. These mushrooms cause anti-tumor activity.)

There’s the not-for-profit physician- and scientist-led Angiogenesis Foundation that shares research and recipes on foods that inhibit tumor growth…but most oncologists will tell you that diet doesn’t matter.

There’s a woman who has a book, course, and Facebook group identifying the metabolic pathways of different cancers and how to block those pathways with inexpensive repurposed drugs and supplements. An incredible number of patients that use this approach are reporting great success at shrinking recurrent tumors in advanced cancers. But again, these are just anecdotal stories so I’m not linking to these resources here.

But why is there no one tracking their incredible results and publishing studies on these patient cohorts? Here’s why: Those treatments do not fit within the American model of the oncology machine which is fueled by $$$$$ pharma drugs. (One of mine costs $20k monthly but due to the weird vagaries of how healthcare gets paid, I pay nothing). The profit motive drives innovation while cheap repurposed drugs just don’t.

Also, the way oncology drug development works is they do far fewer clinical trials at different doses than other drugs to minimize their cost. This means that if a certain percentage of people can tolerate a very high dose of a drug that becomes the norm and other patients lose all quality of life in their struggle to tolerate the drug. Thankfully, an FDA effort “Project Optimus” is working to change that.

There’s also a group of breast cancer survivors who banded together and launched a drive for oncologists to revisit drug dosing to better pinpoint optimal dosing with minimal side effects. I felt so validated in my challenging experience when I read about this!

Overall, it feels like we have a long way to go in treating cancer in a way that increases survivability without bringing patients to the brink…at least, for sensitive patients like me.

Explore Now or Never

If you’ve read this far, I hope that you never need this information. But if you or someone you care about does, I hope it’s helpful. Always advocate for yourself and what you need with any doctor. You know your body best and have to live with your decisions. You have choices.

Get a second opinion. Write down all your questions before your appointment so you don’t feel rushed.

In closing, I just want to say that 2023 was such a stark reminder to me that we just never know what will happen…or how much time on earth remains for any of us.

When I started this blog in 2018, I urged my readers to GO NOW and not wait until all the bills were paid…or the kids were out of college…or retirement was finally here.

In late 2022/early 2023—before the axe fell—we traveled to Mexico City, San Miguel de Allende, and Kauai. Plus,I spent two glorious weeks touring Morocco with Steve, my 32-year-old daughter, and my 80-year-old mom whose biggest wish was to ride a camel in the Sahara Desert. It was a bucket list experience for our family.

There’s so much more of this planet I want to see… and I’m also so glad I’ve been seeing it all along.

So go. Someday is here.