This Time It Really WAS Cancer. 5 Lessons for Smarter Navigation

I’m happy to report that in July I recognized 20 years since the cancer misdiagnosis that caused me to change careers to begin working with all of you. And what a wonderful 20 years it has been!

What I didn’t anticipate was that the 20 year anniversary of NOT having cancer would instead become a real cancer diagnosis.

Scary stuff, right? But the real truth is:

I dodged a HUGE bullet.

I share this with you today in hopes you will embrace these lessons and advice to help yourself, or your clients, or even friends or loved ones.

What happened, and what did I learn to help you?

First:

I caught a cold. (No – it wasn’t covid.) After several weeks of non-stop coughing, I had an x-ray to be sure I had not developed pneumonia. I had not, but the results did strike fear into my heart: no problem with my lungs, but there was something “suspicious” on my kidney. WHAAAAT?

See that shadowy circle on my kidney – above? Yup, that’s it.

Lesson 1: When something seems “off” or wonky, take steps to help yourself, your loved one, or client get the information, advice, or treatment they need as quickly as possible.

It’s true that none of us ever wants to hear bad news. But if you (or your loved ones or clients) wait to learn what’s going on, it’s only going to get worse. Very rarely will it ever go away. So – get thee to a medical facility to get some answers!

I was told I needed a more detailed MRI to determine what it was. I obsessed over what that “something suspicious” could be.

Lesson 2: Avoid “daymaring” or “doomdreaming” or getting over-worried about what the problem could be until you get input from those professionals who actually know what they are talking about. I realize that’s easier said than done! And yes – I know they make plenty of mistakes. (Had the doctors not made mistakes 20 years ago, I would not be writing this to you today.)

However, Dr. Google will tell you that you may have brain cancer when all you have is a bad headache, or that if you have diabetes and a cut on your toe, you’ll need your leg amputated…. etc. That’s doom-dreaming and that isn’t beneficial.

So, instead, spend time learning about the different, possible diagnoses, (this process is called “differential diagnosis“) but do your best to not jump to conclusions before you meet with someone (doctor, NP, PA) who is informed and educated on your symptoms and can provide REAL, possible diagnoses.

Doing some of that research ahead of time did help me formulate questions and helped me choose the surgeon I would need to see. (My primary made one suggestion, but I chose someone different based on my research.)

Lesson 3: Write down those questions! Even if you think you, your client, or your loved one may not need to ask them, put them on the list. Take the list to your next appointment and refuse to leave until you have all the input you need to make the decisions you’ll need to make.

After the MRI, but prior to meeting with the surgeon, I received the MRI results which told me I had renal cell carcinoma – kidney cancer. Yikes. I had so many questions – which I added to my list.

Then when I met with the surgeon, he told me they couldn’t be sure it was cancer, but that 70-80% of those types of tumors are. Further, that the majority of them are “incidentalomas” – tumors found by accident when looking for something else.

Bingo. That was my experience.

He further told me that whether or not the tumor was cancerous, his advice was to have it removed – meaning surgery. He explained what that would involve and how he would handle the surgery – laparoscopically and robotically (tiny incisions). He felt that while the surgery would take longer done that way, it was a far better experience for the patient who would heal much more easily and quickly.

Once you’ve been provided with information about the real origin of your symptoms, focus your research. Learn all you can online or ask other patients who have been diagnosed similarly. (Online discussion groups are great for this. Just double check their privacy policies.) Learn about all your treatment options. Ask about others’ experiences. Learn what the future might hold based on those options, etc.

Lesson 4: In other words: become INFORMED.

When I did this more in-depth research, I learned that everything the surgeon had told me was true. That helped me trust him. It also brought up new questions which I had the opportunity to get answered, too.

Perhaps the most important step in becoming INFORMED is to get a second opinion. And so I did. It doesn’t matter HOW much you trust the first opinion doctor or surgeon, you at least need confirmation that the information provided is the most appropriate for you.

An Eye-Opening Second Opinion!

I went to Moffit Cancer Center to see the “foremost expert in renal cell carcinoma” (their words, not mine)… He agreed that the tumor was probably cancerous but needed to come out whether it was or was not. But when I asked if there was any difference in how he would approach the surgery, he told me, “I see Dr. R____ has recommended laparoscopic surgery, but I only do open surgery. (Much larger incision, much longer to heal.)” That surprised me, so I asked why he would choose to do open surgery. His reply, “Because I can do so many more of them in a day.”

Say whaaaat? I could hardly believe it. I thanked him for his time and left, knowing exactly what I would do next. I called the first surgeon and scheduled my surgery.

Lesson 5: Never be afraid to judge a medical professional based on the choices they would make on your behalf. If it doesn’t sound right, you can ask more questions, of course. In this case, what I heard loud and clear was that this guy was far more invested in his own outcomes (more $$$) than he was in mine. I walked.

You can probably guess most of the rest.

Lesson 6: Just do it. Once you’ve made up your mind (or your loved one or client has) – make the arrangements and begin treatment so you can put it behind you, no matter how fearful or bothered you may be.

I scheduled my surgery for early June. And the good news is that – the tumor is gone! For now, that’s the end of that. It was removed laparoscopically, using a robot. My kidney (mostly unscathed) has healed very nicely. While they tell me no cancer is ever really “cured” – this cancer is gone with very little chance it will ever return. No chemo needed. No radiation needed. Just check-up imaging over time.

Which takes us back to Lesson 1: Listen to your body and then do what needs to be done.

If I hadn’t pursued the possibility of pneumonia, still today I wouldn’t know about the kidney tumor. I had no symptoms of a kidney tumor, and what I learned while doing my research is that most people don’t have those symptoms until the tumor becomes life limiting or life threatening. Mine never got there.

I had renal cell carcinoma but it won’t shorten my life or my quality of life.

A bullet well-dodged based on smart choices and decision-making along the way.