From Patient Advocate To Patient...And Back: Part 1
Editor's note:This is part 1 of a 2 part 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.
Yes- I am now the patient. In September of 2018, an ultra-sound of my pelvis revealed a mass/cyst (it’s both) the size of an orange in and around my left ovary. I was immediately referred to a GYN/ONC who basically told me that based on my symptoms, family history, and the ultrasound findings, the odds were 80% benign, 20% Ovarian Cancer.
This is where the rubber meets the road folks. I left my career as a surgery nurse in December 2017 to become an RN Patient Advocate, and I never saw this coming. Now I am the patient and let me tell you…I walked into that first appointment thinking I knew what I was doing…NOT SO MUCH. Thankfully, I had Ciera (my business partner and registered nurse patient advocate ) and my husband with me. While Ciera took notes and recorded the entire appointment, I sat there dumb-founded. I was astonished at my loss of all logical sense, especially when it came to the big C word — Cancer.
TIP- Always, always bring someone with you to take notes, ask relevant questions, and provide support. I promise you won’t hear or remember everything.
I left the appointment with dozens of questions that I should have asked, and I had pretty much made up my mind that I was going to have a total hysterectomy with removal of the left ovary, left fallopian tube, uterus, cervix, and right fallopian tube. The doctor would spare the right ovary as long as he didn’t find any cancer.
«I left my career as a surgery nurse in December 2017 to become an RN Patient Advocate, and I never saw this coming. Now I am the patient and let me tell you…I walked into that first appointment thinking I knew what I was doing…NOT SO MUCH.»
How did I feel? Scared, panicked, anxious, overwhelmed AND ok, positive, strong, calm. I guess a range of human emotions is what I felt. What was I going to do? I was scheduled for (in my mind) a big procedure. Most of my lady parts were coming out and I was compelled to get going as quickly as possible. After I left the office, I thought to myself, “What happens after I have all these organs taken out? I mean how does this affect, say, my sex life? Is this the only option? What if I just had the ovary removed?” So many questions, all calling for my attention. I couldn’t even put them in a logical sequence. My head was spinning…
My epiphany two days later was, “Holy shit! I really don’t know what all my options are.”
TIP- Unless you face immediate/imminent death, do your best to explore all your options. Just because you have been presented with a treatment plan doesn’t mean it’s right for you.
I had twelve days to become truly informed and that is what I did...
WARNING: This may be TMI. If you are faint of heart — get over it. We are going to talk about vaginas, hysterectomies, ovarian cancer, treatment options, patient advocacy and I might throw in hemorrhoids, because lots of people have them and no one wants to talk about them.
Remember the TMI warning? It’s about to get real. There were a lot of examinations, testing, and scanning. All this testing began when I went to see my GYN doctor because I had this very clear, slightly pink vaginal discharge. Not normal, but I thought it had something to do with my Mirena IUD or that I was beginning menopause. My doctor did a vaginal exam, ran some tests like a CBC, CMP (if you don’t know what these basic tests are: a teacher of mine always says “Look it up”, so go look them up), and a pregnancy test. My uterus was slightly wonky (my words) on examination, and she felt an ultrasound was in order.
«I have felt so grateful to have the doctors I do on my side and I know that while they give me the best possible information as they understand it, it is still my right to question and go after more information, should I want it.»
The ultrasound revealed a suspicious mass/cyst on my left ovary. Frankly, after delivering two babies and enduring annual exams my whole adult life, the vaginal exam was fine (I don’t love it, who does??), but the rectal exam is another story. I did survive it! My doctor could feel the cyst/mass there as well. I will say, while it may seem obvious that he would be doing this exam, I was surprised at things you don’t know until you experience them first hand and that exam really upset my hemorrhoids.
Another example: Anyone familiar with the cancer marker CA-125 blood test? Gynecology and Cancer, are not really my wheelhouse. I’d heard the term and vaguely knew what the test was for, but I had no idea what the results meant. I did some research. According to The Foundation for Women’s Cancer:
The CA-125 can help the clinician define the nature of the problem and it is used as a tool to follow the treatment of ovarian cancers. Normal (or thereabouts) is 35 units with most healthy women having values less than this. Above 35 units it is more likely that there is trouble brewing in the body. If 35 is the “normal” level, mine was 53.9. This is not a definitive test for cancer, but it can provide some helpful information when ovarian cancer is on the table as a possibility. I found it somewhat hopeful that my level wasn’t in the hundreds- this seems to be more predictive of cancer, but not always.
«I consider myself of average intelligence and, normally, I can read through a research article and get the basic points. However, when you are the patient it is not that easy. I found it very hard to be objective. Any bias I had towards articles I thought was in my favor, I kept while articles with opposing views went in the garbage. How is that for being informed?»
The CT scan was easy, the only thing is: why is it needed? What does a CT scan actually do and what does it tell you? What are the risks of being exposed to radiation during the scan? Why contrast during the scan? What is the contrast? Can you have an allergic reaction to the contrast? So many potential questions that might occur to you as you do your research!
Ultrasound: I cannot state clearly enough how important it is to do your best to understand what your tests mean. I thought my ultrasound was just fine, but when I called an organization dedicated to helping women with gynecological issues, I found out that perhaps my ultrasound was missing some information that could be predictive of ovarian cancer and could help drive the best course of action. Who reads the scan? What information is needed to help the doctor make the best care decisions (I mean we were talking about removal organs here)? I requested a new ultrasound and picked a radiologist specializing in women’s health to re-do the scan. Trust me- I had my first ultrasound report (for comparison), CT scan, and my list of questions regarding the missing information, in my hands, when I went in for this second scan.
TIP- Bring your pertinent medical records with you to any medical appointment. While I would like to think that our electronic health records would make it easy for healthcare providers to access our information at the time of an appointment, this is not usually the case. Have the hard copies, including any scans or imaging, in your hands just in case. This saves a lot of time and you will get more out of your appointment.
TIP- Know why you are having any tests done, understand the benefits and risks associated with them, and remember you have the right to consent or decline any test. You also have the right to ask for a repeat test if something seems amiss. Try your best to understand what the results mean. If you don’t understand, it is your right as a patient to ask until you do understand.
TIP- Be informed! This is absolutely necessary. How you go about it is up to you. Whether you get curious and ask a lot of questions of your healthcare provider until you feel satisfied or spend hours in the archives of a medical library or seek out a second option, do what occurs to you to do.
TIP- Most healthcare providers want to give the best care possible. I am not implying that doctors do not know what they are doing or do not want the best for their patients. Quite the contrary. I have felt so grateful to have the doctors I do on my side and I know that while they give me the best possible information as they understand it, it is still my right to question and go after more information, should I want it.
How did I feel? I didn’t sleep so well, but a very lovely friend told me sleeping was highly overrated, which I thought was brilliant. I can function and be tired at the same time. Who knew? Look, I was scared shitless. I melted down, I got busy, I got reflective, and I melted down some more. But I knew that whatever, ultimately, happened was totally out of my control. So I had a crash course in getting comfortable in the unknown.
«What “Informed” looks like for each one of us is unique and individualized. This is so important....It does not matter how you go about becoming informed, as long as it is what feels right for you and at a bare minimum know why, what, how, who, benefits, risks, alternatives.»
A few days later the CT scan came back clean! No lesions, tumors, or enlarged lymph nodes were seen on the scan except the orange-sized mass on my left ovary, of course. Again, not a guarantee, but it was still really, really, good news.
So how does one become informed?
As an RN Patient Advocate, I work with a lot of clients. Sometimes they want me to help them find a retirement community or a rehab center for mom or dad. Sometimes they want me to be at all their medical appointments to take notes and ask questions. Sometimes they need someone to coordinate their care so all their healthcare providers are on the same page and some want me to help them figure out what their best treatment options are.
I learned a doozy on this one as I started to gather information to educate myself on the course of treatment and my options. Here are some tips.
What “Informed” looks like for each one of us is unique and individualized. This is so important. Go sit in the medical school library and read peer-reviewed journal articles until you are blue in the face or get very curious and ask your doctor a lot of questions or feel good knowing that your doctor has your best interest at heart and will take outstanding care of you. Hire a patient advocate to do the work for you (nice plug right? See how I snuck that in there?) Or, use your network of people and build yourself a team to help you figure out what it means to be informed. It does not matter how you go about becoming informed, as long as it is what feels right for you and at a bare minimum know why, what, how, who, benefits, risks, alternatives.
For me, it looked something like this:
First and foremost: I had to slow the urgency train down for two seconds. I have a friend who reminded me that my surgery was scheduled two weeks out- I had time. I did not need to have a decision right then and there. That was so helpful because I seemed to get some space and perspective from this slowdown. Of course, you might not want to slow the “urgency train” down in a true emergency.
Second: Researching and learning all about treatment options post-surgery (if it turned out to be cancer) could go on the back shelf. No need to even go down the “What if I have cancer, then what…. chemo, radiation, more surgery rabbit hole…” until I knew what I was dealing with. No need to knock on that door. This seemed to create even more space to think straight.
This is where my advocate was really helpful. Having her to lean on and to bounce thoughts off of was invaluable. The fact that she is a nurse is also very helpful because she speaks the medical language and understands what everything means. Not to mention the fact that she attended almost every appointment with me!
I called on my peeps who have access to medical libraries and had them find me the latest research using keywords like ovarian mass, borderline ovarian tumor, ovarian cancer, hysterectomy, and oophorectomy (go look that one up).
«This is where my advocate was really helpful. Having her to lean on and to bounce thoughts off of was invaluable. The fact that she is a nurse is also very helpful because she speaks the medical language and understands what everything means. Not to mention the fact that she attended almost every appointment with me! „
Find smart people to read the material and summarize it for you at a 5th-grade reading level. I am not kidding. I consider myself of average intelligence and, normally, I can read through a research article and get the basic points. However, when you are the patient it is not that easy. I found it very hard to be objective. Any bias I had towards articles I thought was in my favor, I kept while articles with opposing views went in the garbage. How is that for being informed? So, while I read a ton, I had to stop and put it in the hands of someone who could be more objective and make it easy to understand. Once you go into “analysis paralysis” all bets are off. Plus, I got a visual “Decision Tree” out of it!
Be wary of Dr. Google. Use credible sources. Remember CBC and CMP? I like www.mayoclinc.org for things like this. Pretty straightforward information from a reliable source. There are, of course, many other good sources out there in cyberspace along with some not so good sources.
Talk to people. I talked to my primary GYN/ONC doctor, a Radiologist who specializes in women’s health imaging, my naturopathic doctor, several other naturopathic doctors (in and out of state), a naturopathic oncologist, women who have had hysterectomies and even a foundation dedicated to helping women learn about hysterectomies and oophorectomies. Get a second opinion from a different doctor if you need to, there is nothing wrong with this at all.
Finally, if you love your doctor (and you will know by how you feel when you’re with him/her) then have a very honest discussion about what you would like to see happen. I have to tell you, I took my doctor’s recommendations very seriously because, at the end of the day, I would not be making a very informed decision without him. I just think that while it is, ultimately, my decision, I would prefer that we come to a decision together.
So, there you have it! For me, I felt like I did due diligence and the funny thing is, I still had no idea what I was going to do. Two days before my proposed surgery as I was putting on my underwear, it occurred to me what to do. At that moment, I just knew. It didn’t seem to have anything to do with how much research I did. I just knew that robotic surgery with a full hysterectomy (please save my remaining ovary if possible) was the thing I knew to do.
I did it. I went in for surgery not even remotely anxious, drifted off to sleep to Fleetwood Mac, woke up six hours later to find out I had some sort of ovarian cancer. I had extensive bruising (from my duke-it-out session with my team-mate The Robot). During recovery, I did not think much about the cancer diagnosis. Too many unknowns and why go there? I had other stuff to concentrate on. Mainly getting back to normal.