Just Shy of a Decade and Still Learning

This is a guest post by Teri Wight, 51, who was diagnosed with chromophobe renal cell carcinoma in 2014. She is a teacher based in Arizona. Read her other blog post, “What Cancer Has Taught Me”.

At the age of 51, I am a nine and a half year survivor of chromophobe renal cell carcinoma (chRCC), a rare type of kidney cancer that affects about 5% of those diagnosed with kidney cancer.

My cancer was discovered incidentally via ultrasound at a routine well woman exam. Seven weeks post discovery, I had a total nephrectomy (removal) of my right kidney.  Following surgery, I was encouraged to enjoy survivorship, as the cancer was unlikely to return. Other than follow up scans there were no further instructions. To my surprise, this seemed to be the protocol for chromophobe patients.   

In the space of seven weeks I went from thinking I was healthy, to being a cancer patient, to having an organ removed, to being a survivor. I was overwhelmed, confused and honestly terrified. No oncologist appointment?  No further treatment? Really? Nothing?

Five years of clean scans later, an MRI indicated a “suspicious for metastatic disease” spot on my liver. After a referral to my first ever oncologist, and nearly six months of surveillance during the height of COVID, I had a liver wedge resection and was again deemed “ a survivor.”  Once more, the doctors said no therapy drugs were needed. Through consultation with my oncologist, I learned that actually there were no effective therapy drugs for chRCC at that time.  I was encouraged to not worry as this now was most likely the end of the cancer.

Three years of clean scans later, in July 2023, yet another “suspicious for metastatic disease” spot was detected on my liver. I chose an ablation procedure to remove that tumor, as it is much easier on the body than the open or laparoscopic surgeries.

The ablation was successful, but the spot was too tiny to biopsy. Three months later, another tiny spot on the liver was detected. I chose ablation again, and this time a biopsy confirmed metastatic chromophobe. I was officially a cancer patient again. I am now on a systemic therapy that has seen some promising results in chRCC patients.

As you might imagine, I’ve learned a lot in the past decade. There are a few things I’d like to share that I wish someone would have told me at the very beginning of this journey. 

First, you must be your own advocate. Ask questions and share your feelings of uncertainty. Ask why or why not. Persist until you get answers. Get a second opinion if you feel like your questions remain unanswered and your concerns are not addressed. Many surgeons and oncologists are unfamiliar with chRCC, but that doesn’t mean they can’t refer you to someone experienced, research the disease and discover answers for you, or meet and talk to you in terms that you understand.

Second, realize that you do not have to do this on your own. Let your family and friends love you, care for you, and help carry the emotional burden of cancer.  I am a fiercely independent woman. Having cancer, however, has taught me that accepting help from others is not a sign of weakness or dependence; it’s necessary to my survival.

A larger community of support organizations and social media groups that specifically support those of us with chromophobe (which I’ve only found in the past year myself) can also be incredibly useful! These people and resources are invaluable sources of research, medical, and treatment information. Because chRCC is rare, it can be challenging to find other patients or survivors or experienced professionals, but if you are reading this you have found a great resource in this organization.

Simply connecting with those who share our same experience has been a source of renewed strength for me. I wish I had known to do these things a decade ago.  My life as a cancer patient and a survivor is so much better now that I am so deeply connected on all fronts. 

Third, having cancer is hard; it can be devastating at times. Cancer brings uncertainty and “what ifs” to the forefront of our lives. But it can also bring valuable perspective about what is truly important in life. For me, cancer has forced me to focus on better balancing my home and work lives, to manage my stress, and to stop trying to control all that which I cannot change.  It encourages me to wake up each day with gratitude for simply being allowed to have another day as a wife, mom, daughter, sister, niece, friend and teacher.

I want to share that when I was diagnosed in 2014, I hoped and prayed that I would live to see my children (then 10 and 8) graduate from high school.  Not only is my eldest now in college, but my youngest will graduate from high school next spring! I made it! I may have a rare cancer that is proving a challenge to manage/overcome, but I also am living a life filled with joy, adventure, laughter and love. I wish the same for you.