From Patient Advocate To Patient...And Back: Part 2

Editor's note:This is part 2 of the personal journey of an RN Patient Advocate who suddenly became a cancer patient. The advocate identifies misconceptions, addresses her fears, and emphasises the need to take charge of your health through knowledge and resources. Read part 1 here

I guess the thing I most want to share is the emotional/mental side of my experience with ovarian cancer. Of course, there was the initial shock and disbelief, which is why I didn’t really hear a thing the doctor told me at my first appointment. Thank-goodness for my nurse advocate. Then it was “urgency” to get the tumor out ASAP even though I was booked for surgery three weeks out. I mean, I heard cancer and all I could think of was “I am going to die”. Once I got off the urgency train, I felt at a total loss about how to become informed about my proposed surgery so that I could make the best decision for me. I have been a surgery nurse my whole career, I knew very little about cancer. The overwhelm was intense and when that passed, I got busy. I felt really good on surgery day. I did not feel particularly scared and, I swear, it was because I made a very informed decision and had a strong intuitive feeling that I was making the best choice for me.

«Before cancer I knew that preventable medical errors cause a lot of very poor outcomes, but I did not understand how difficult it is to advocate on your own behalf when faced with a challenging diagnosis. This experience has taught me to better advocate for my clients and how to support the medical team so that patients do not suffer these poor outcomes.»

After surgery, I was told I did, indeed, have a rare ovarian cancer, but I did get to keep my right ovary and I wasn’t going to have to deal with surgical menopause on top of everything else. I was groggily happy about that. Two weeks of post-operative recovery did not seem to give me time to think about the pathology or staging. Good news there too, since my recovery was rough and painful. At my post-op follow up I had good news yet again because all the pathology reports came back negative and the tumor was caught in an early stage. The funny thing is, I didn’t really hear this good news until later because the only thing I seemed to focus on was my doctor’s recommendation for adjuvant chemotherapy. But even before he could get the word “chemotherapy” out, I said no. I said no because based on what he told me about the rare type of ovarian cancer I had, the recommendation for chemotherapy came from how they treat the 85% of epithelial ovarian cancers, not the 0.1% that was my cancer. It just did not make sense to me and I tell you my body knew it too. I could, literally, feel all the cells in my body do a happy dance when I said no to chemotherapy. This is not to say there is anything wrong with choosing conventional treatment or chemotherapy. It matters most what your inner wisdom tells you to do. That’s it.

So, say you are going to turn down conventional medicine’s treatment options. Then what?

What are some other options?

I grew up with a mother who rarely took me to a doctor. Instead, she would slather comfrey salve over every cut, bruise, belly ache, or any other ailment that popped up. She was a believer in that green, stinky salve and she used it a lot. As a child, I would get bronchitis quite often, and went to the doctor once: when I was blue and having trouble breathing. Bless her. She tried all sorts of herbal enemas, teas, or any other naturopathic treatment for bronchitis, but this one time I needed antibiotics and as a result, I grew up with a bit of skepticism for this kind of medicine.

«For me, it made sense to find a naturopathic oncologist because I was interested and curious about some of these “outside of the box” treatment options. So how do you find an integrative practitioner who specializes in cancer?»

Ironic that I became a surgery nurse! How conventional can you get? The thing is, there is a wide world of exciting therapies outside of conventional medicine. For me, it made sense to find a naturopathic oncologist because I was interested and curious about some of these “outside of the box” treatment options. So how do you find an integrative practitioner who specializes in cancer? As a nurse advocate, I help my clients find doctors all the time. I have a process to find a doctor best suited to meet the needs of my client. Typically, if I am doing a “blind” search because I did not get a reputable referral to start with, I look up:

Education

Board certifications

Professional organizations

Involvement in research

Publications

Sanctions and/or disciplinary actions filed

On-line reviews- I consider this when many people have taken the time to write a review, either good or bad.

This process of vetting a quality medical doctor is made fairly simple with the Internet. It’s not as easy with Naturopathic doctors.

Funny side note: I have found some outstanding physicians using these criteria and you would think I would use the same process I use for my clients on myself! Nope, that urgency train again. I found a medical doctor in California who looked great via her website. So, what did I do? I called the office and made a long-distance “telemedicine” consultation for a whopping $600.00 for 45 minutes without looking at any of the above-mentioned criteria. It was my husband who said I might want to practice what I preach. Oh yes, that’s right, I am not dying right this minute, I have some time. I came to find out that not only did this physician have scathing on-line reviews, but she also had a formal sanction filed against her, no formal training in oncology and she was fairly pricey. Lesson learned.

There is such a thing as a naturopathic oncologist. But first, what is a naturopathic doctor and how are they trained?

Naturopathic Medicine combines the wisdom of nature with the rigors of modern science. Naturopathic physicians are trained as primary care providers who diagnose, treat, and manage patients with acute and chronic conditions while addressing disease and dysfunction at the level of body, mind, and spirit. They look at the “why” of disease or root cause and treat their patients from a holistic perspective.

Naturopathic medical schools accredited by the Council on Naturopathic Medical Education and require four years of post-graduate in-person education. The first two years of naturopathic medical school mirror conventional medical school with courses like anatomy, biochemistry, histology, pharmacology, and pathology. In addition, naturopathic topics are covered including counseling, botanical medicine, physical medicine, nutrition, and homeopathy. The combination of naturopathic and conventional learning provides the most comprehensive holistic medical education. Graduation from an accredited school and successful completion of board exams culminate in licensing as a naturopathic doctor. In addition, some students choose to continue with their education with a two-year post-doctoral residency. All residencies emphasize clinical practice and also include opportunities for continuing medical education and naturopathic research.

And a naturopathic oncologist?

Naturopathic Doctors (NDs) trained in integrative cancer care can play an important role in the support of people diagnosed with cancer through recovery and remission. They provide evidence-informed guidance on the safe and effective use of natural and supportive therapies when combined with conventional treatment. Combining naturopathic and conventional medicine supports the best possible outcomes for patients. Goals are to improve quality of life, manage side effects, help with recovery, prevent a recurrence, and provide education for a healthy lifestyle.

Naturopathic physicians who meet standards established for advanced experience and knowledge in cancer care are eligible for board certification in Naturopathic Oncology (FABNO: Fellow of the American Board of Naturopathic Oncology). Qualifying doctors must pass stringent examinations that demonstrate competence in both naturopathic and conventional oncology. These naturopathic physicians meet the highest standard of the profession as specialists in naturopathic oncology.

You can see that these doctors have some rigorous schooling and stringent exams to pass to become qualified to practice naturopathic medicine/oncology. Finding one who meets these qualifications wasn’t easy. I had to dig around a bit and piece it together to get the full picture. What I found very helpful though is that most ND FABNO doctors (naturopathic oncologists) will give you a free 15-20 minute consultation. I loved this, as I was able to either chat with them on the phone or see them in person. This is something I have not had much luck with when finding a medical doctor. Free consultations don’t seem to be a thing in traditional medicine. In any case, I interviewed six naturopathic oncologists and found the right one for me, in my very last interview. How did I know? He had all the aforementioned qualifications, but more than that: this is key so remember it!

I just knew he was the right doctor for me. I walked into his office and I just knew. Do you know when you just know? Have you ever had the feeling that you just know something is true for you? It was that feeling. I just knew. I also (now) know, you can never go wrong when you follow that sense. And what’s more, this is also key, once I jumped off the urgency train of needing to be fixed or cured of any remaining cancer (so I wouldn’t die), I saw that all the FEAR I lived with on a daily basis was not only what probably gave me cancer, but was also the thing that slipped away when I saw that I never needed fixing to begin with. That no matter what happens, I will always be ok. This does not mean I will sit around and eat Cheetos all day or I will never feel fear again, but I was compelled to work with this ND to make my body/mind healthy and strong. The gift in all this, for me, is that healing comes from a very different place than any treatment, therapy, or doctor. It comes from knowing and even if cancer comes back, I will always be ok. Whoa, that’s deep.

Back to the actual cancer:

Initially, I was diagnosed with a Sertoli-Leydig ovarian tumor that was the size of an orange. This tumor has gotten a lot of attention in its rarity. Sertoli-Leydig ovarian tumors belong to a group of sex-cord stromal tumors and constitute less than 0.5% of ovarian neoplasms? Rare indeed. These neoplasms are characterized by the presence of testicular structures that can produce androgens. My neoplasm must not have been functionally active in the sense that I did not start growing a beard. Thankfully, right??? Although I would have fit right in here in Portland, Oregon.

In addition, my husband and brother-in-law think it’s wildly funny that I had “testicular cancer”. Anyhow, I digress. This tumor made several pit-stops before it made its final destination at the University of Michigan. A very fine pathologist here in Portland saw it first. It then went to MD Anderson (a top-grade cancer center in Texas), some sort of cancer conference in New York and then to the University of Michigan through my uncle (who is an experimental pathologist) and the University of South Western Texas for additional pathologists with expertise in ovarian tumors to examine. I mean, isn’t that what you get excited about if you’re a pathologist with expertise in ovarian tumors? By the way, my tumor went to the University of South Western Texas because I did some research on the Internet to find experts in rare ovarian cancers and found a professor/researcher at this University, emailed her to see if she was interested in examining my rare tumor and got a resounding YES! It turns out that the diagnosis of Sertoli-Leydig changed slightly.

Apparently, I have a female adnexal tumor of Wolffian origin (FATWO) with a Sertoli cell overlap. This means there are some Sertoli like cells, but the tumor is not a Sertoli-Leydig. This tumor is even rarer, 0.1% of all ovarian cancers! Sometimes malignant and sometimes benign and as far as I can tell, about 80 known cases in the literature. The good news with this tumor is that the recommendation is to “watch and wait”. I am relieved I opted out of chemotherapy when it was recommended. In fact, the little research there is on this tumor says that chemotherapy isn’t effective.

Why am I telling you all this?

Tip:

Let’s go over why it’s important to know your body. In retrospect, I ignored a few things that might have gotten me into seeing the doctor even earlier than I did. Not sure it would have made a difference, but that is not my point here. Hang in there. I have been on a diuretic for high blood pressure since 2012, this means I pee a lot. At the beginning of summer 2018, I started peeing more than I normally do, like I remember one day at the mall (of all places) I think I counted ten trips to the bathroom (my teenage daughter was so annoyed). It was just that some days were normal peeing (a lot) and other days seemed over the top (more than just a lot). Also, I was eating so healthy (I cut out everything except whole foods) and I didn’t lose one pound. Usually, I drop weight immediately when I cut out crap. My belly was a pooch, I was so bloated. The thing is I didn’t feel sick. I guess that is why ovarian cancer is so deadly. You don’t feel sick until you are really sick. So, trust your intuition, your inner wisdom, your sixth sense. I trusted enough to know that when the gynecological stuff started to happen, while I thought it might be menopause or my IUD, I didn’t just brush it off. I went to see the doctor.

Let’s review the signs of ovarian cancer:

First and foremost:

Trust your gut- if you think something is not right, even if you feel fine, go see the doctor.

Abdominal pain (not me)

Persistent indigestion (not me)

Loss of appetite (not me)

Bloating that doesn’t go away (me)

Urinary frequency (me)

Feeling full all the time (not me)

Alternating diarrhea with constipation (not me)

Persistent lower back pain (not me)

Sudden weight loss (definitely not me)

Vaginal bleeding (you will have to read earlier posts to know if this was me or not)

Treating ovarian cancer in the early stages is a much better prospect than treating it when it is advanced. I am sure all my doctors would agree.

«Patient advocacy decreases medical errors and is one solution in creating a healthcare system in which all people get the best care possible.»

Today, I am close to the two-year mark of being NED- no evidence of disease. I am grateful every day for my health and I am also grateful for the journey I traveled as a patient. Getting the diagnosis of cancer was scary, heart-wrenching, and overwhelming, but I understand better why advocating for yourself or having an advocate at your side is imperative in our current medical system. Before cancer I knew that preventable medical errors cause a lot of very poor outcomes, but I did not understand how difficult it is to advocate on your own behalf when faced with a challenging diagnosis. This experience has taught me to better advocate for my clients and how to support the medical team so that patients do not suffer these poor outcomes. Patient advocacy decreases medical errors and is one solution in creating a healthcare system in which all people get the best care possible.