What Now?
Active Surveillance, NED, Scanxiety and more
“The absence of a negative does not equal a positive.” As smooth as my words can be, I did not come up with that. Rather it was my therapist who said those words to me this week. Post-surgery I have had a lost feeling. I often ponder “what now?” What will life be like now?
The theme lately has been waiting, and waiting some more. Now it seems we have some answers, some ambiguity, and, well, more waiting. Below is a good breakdown that sums up what is going on.
What Was Inside of Me? (That’s What She Said)
Short answer: Cancer. Long answer: Stage 3, Papillary Type 1, Renal Cell Carcinoma that metastisized to a lymph node. More info here. Renal Cell Carcinoma(RCC) is the most common type of kidney cancer with Clear Cell being the most common subtype of RCC coming in at about 80%. Papillary RCC makes up about 15% of RCC cases. So kids, it’s not always great to be unique. The silver lining here, if there is ever a cancer silver lining, is that my cancer is type 1 which is the more common of the 2 types and the least aggressive. Fun fact (that’s not so fun): the cancer in the lymph node was a different type. We are not quite sure what exactly but why not top off this proverbial cancer sundae with some cancer sprinkles?
Also I should note, we did think this was going to be Clear Cell going into this whole process. The biopsy however showed something else, and now the pathology from the surgery shows something else. It should be said that the pathology is a more definitive answer than the biopsy was so our picture is a little clearer now. Also if you are not sure what a pathology report is, here is more info.
What’s My Status Now?
I was told to live life as if “I am cancer-free” by my surgeon. While that news is great to hear and does provide some optimism, the truth is I believe I am in a NED stage currently. NED stands for No Evidence of Disease. NED is most similar to the definition of remission. Basically this means that based on surgery, bloodwork, scans, and more- the medical team can not detect any evidence of disease. Where cancer-free differs is in addition to NED the doctors believe there is no cancer in the body. Could I be cancer-free? Possibly. However coming into this cancer journey, the belief of the Oncologist was that microscopic cancer cells could be floating around in my body still after the surgery. It was because of this belief that the follow up plan was some kind of immunotherapy or adjuvant therapy after surgery. Surgery was a success and the visible cancer, that which was seen on scans, was removed. The problem here is that because Papillary RCC is so rare, there is not enough research to justify undergoing a demanding treatment with no proven beneficial outcome. This really dashed my hopes at “flushing out” my system to remove any microscopic cancer- maybe bleach is an option?
What’s the Plan Going Forward?
Active surveillance is the answer. Active surveillance means the patient (me) undergoes routine tests, exams, and/or scans. Unless there are any changes detected in my health there will be no treatment administered. Active surveillance is dependent on the patient and varies. My surveillance will include scans every 3 months for the first year or two. The hope is these scans show NED. If they remain NED then the frequency will drop in subsequent years.
A cancer benchmark is usually the 5 year point- that is 5 years of NED scans. The 5 year survival benchmark originated pre-World War II. It was thought that surviving cancer 5 years was unattainable back then. Luckily, medicine has advanced since then. Unfortunately the research and frequency of Papillary RCC is still rare. Thus my 5 year survival rate can be anywhere from 50% to 90%. It really is tough to estimate. To top that off, the chance of my cancer returning is about 50%.
So What Now?
Good question. Aside from my quarterly scans, therapy, group sessions, recovery, and more- it’s really a waiting game. Which, at this point, I should really be used to. Easier said than done. The anxiety is still present just in a different form. I will surely have waves of emotion as I bounce from scan to scan- there’s actually slang for it: Scanxiety. On top of it, you never want to hear you have a rare medical anything unless it is a recovery. I’m not some kid who pulled a rare Pokémon card, I pulled the rare cancer card.
As this journey started I was prepared for surgery and some kind of treatment after. Now, with no treatment, I do feel a bit lost. On one hand I should be happy. We think we got all the cancer out, or, at least the visible cancer. On the other hand it feels like I am waiting for the other shoe to drop. Truth be told, I feel it will come back at some point or another. It could be 10 weeks, 10 months, or 10 years- but if my body betrayed me in my 30s, I am betting on it happening again. Am I okay with this? No. No but I won’t be shocked. Honestly I will be more shocked if it doesn’t come back. Mentally I go back and forth between relief and worry. Each day is different and new.
For now I’m going to maintain my therapy sessions, my Gilda’s club sessions, and focus on recovery. Before I know it July will roll around and I’ll be laying down inside a whirring tube getting my body scanned again, hoping we get a break from cancer. I will keep posting here as well. I still have a ways to go on this recovery and I will still be dealing with cancer on some level.
Thank you as always,
Joe
Hey keep fighting like you have been. And as hard as it may be, stay positive. You and your wonderful support system will continue to kick ass.
It's so hard to deal with uncertainty, especially of this magnitude. You are clearly are using all the tools at your disposal to get through this huge life changing experience. Your sense of humor, as always, is so great. You really crack me up, even though this is serious stuff you're dealing with. I hope you keep feeling all the hands on your back and know that even this is your personal battle, you're not alone!