Tales from the Cancer Data Free Zone

by Hope NesterukPatient, Hodgkin's LymphomaFebruary 2, 2020View more posts from Hope Nesteruk

I had cancer when I was 29.  Hodgkis Disease, stage IIA. Had cancer. Past tense. I did my 6 cycles of ABVD, got a clean PET, pulled out the port, and went on with my life.  I didn’t embrace the “survivor” label, didn’t raise money, didn’t even really talk about it. Sure, I followed up with oncology… for the most part.  Truth be told I was “lost to follow up” for a few years.

But those 6 months of cancer occupied the same space in my brain as that time I had the flu in July in an unairconditioned brick house, or the New Years norovirus from the in-laws lukefish party. Both of which are seared into my mind and rank higher on the list of “sick days” than any one chemo day… I know, I got lucky while being unlucky.

But I eventually found my way back, and finished my 10 years of follow up.  I still remember that “last” appointment. April 2014, 10 years after my original diagnosis.

I asked “So I’m done now?”

My oncologist raised and eyebrow, “how so?” He asked.

“They said 10 years for a blood cancer. This is 10 years… I’m good!”

He laughed a bit, but eventually agreed.  And I left happy that I was DONE with oncology!

So, what am I doing talking about cancer today?  Well, its been a hella year.

Back in March, I had a stroke.  Kinda of like that “good cancer” I had so many year ago, I had a good stroke, with no lasting physical effects.  Once again, lucky with the unlucky diagnosis.

But, while they were doing imaging for the stroke, the radiologist noticed my right paratracheal lymph node was enlarged. “Suspicious for lymphoma” said the report.

At discharge, the conversation when something like this:

Attending: “So, we couldn’t figure out why you had a stroke, follow up with our neuro group on Thursday at 10am.  And… you need to follow up with oncology.  You have an oncologist, right?”

Me: “It’s been 15 years!! I had one. He told me to have a nice life 5 years ago!  I’m not sure I remember his name.”

Attending: “Well, you need to call and follow up with him.  He’ll need to see this.”

Me: “But its been 15 years!!  10 years and your cured?  Right?!”

Wrong.

A week later, after I figured my oncologists name, I greeted my him with something warm and fuzzy like “I was done with you!”  He laughed and took it in stride.

The next few weeks were filled with the usual things, PET scans, biopsies, visits to oncologists.  It was six weeks after the stroke when I got the initial biopsy results.  Similar to 2004, my doctor called me at work.  In 2004, I left work for the day in tears.  In 2019, I hung up and went back into a meeting, knowing that “had cancer” was now “have cancer.”  But different from 2004, my doctor called me back that evening, after I got home.  Just to check on how I was processing.  He gave me his email address, and we exchanged a few more emails that night with respect to my previous treatment, which was in another state.  Luckily, I had a (the only existing) copy of my records.  The next day, I took over my doctor’s lunch break and he went over many options with me.  Including some thoughts from others he had reached out to after the biopsy results.

And so began my journey into the Data Free Zone. Second and third opinions.  Because when you are in the data free zone, there isn’t a standard of care.  And they are all just relying on what they know and what should work. The doctors used that data free phrase, along with several others that stuck with me, like:

“the book is really thin on late relapse.”  (This is true, I bought the text book on Hodgkin’s Lymphoma – late relapse is mentioned on only one page),

“There is no standard of care really, just a couple paragraphs on Up To date”, which, by the way, I memorized.

“I think we’ve followed a different course for every case we’ve seen.”  But, nobody would say how many worked.

Six weeks after the pathology results, the only thing that was clear is I could probably get away without transplant.  Probably. If I do radiation.

But I couldn’t even get agreement on the chemo cocktail.  One wanted BVD, one suggested AAVD, and the third suggested a clinical trail with brentuximab + an immunotherapy.  So at least we had a common thread of Brentuximab.  We were getting somewhere!

Four weeks after the biospy, I was almost non-functional.  My scientific side had pulled every article I could find on late relapse and brentuximab trials from pub med. I could have probably written a lit review for my own case study, and did write my own version of a treatment plan based on what I read. That was pretty much the only thing I could think about.  At work, I was pretty useless.  And sleep?  I didn’t.

One of the oncologists I consulted was at the local NCI (National Cancer Institute) center, who recommended a clinical trial.  I seriously considered it, but I couldn’t get past the feeling that it was just a desire to have that outlier, that time to relapse of 171 months, in their data pool.  I even joked with the doctor that *that* was why he recommended it.  He kind of laughed it off. But, to be honest, I was also a bit annoyed by the responsiveness, or lack thereof.

It took two and a half weeks to get the recommendation, 10 days after their tumor board met to discuss me.  And when I ask what they recommended if I didn’t qualify for the trial, I didn’t get an answer.  But, I did decide I would look into the trial.  11 days after I ask for the information about it, they finally called me back, and it turned out, I didn’t meet the initial inclusion criteria.

Meanwhile, my primary oncologist was probably regretting giving me his email address, but he never admitted it, appearing happy to respond to me as late as 10pm.

In the same 11 days I was waiting to hear back with more information about the trial went down to Virginia to see my original oncologist for a tie breaker.  Plus, I think there was a part of me that wanted to see him for comfort.  He did the first round and I liked him then, maybe he has an opinion on this round.  Plus, HE TOLD ME 10 YEARS!! I was still a bit pissed about that.

Pretty sure I was quite the surprise.  He walked in reading the report I had provided.  He glanced up from the paper, looked back down, then back up at me, and said “I know you…. remind me why?”  I filled him in on his treatment history of me and why I’m sitting there today.  Considering he did his fellowship at the NCI center I saw, and he knows all the doctors there, I was pretty sure he would support their recommendation.  So, I was pretty surprised when he heard me out and then said “no no no, you haven’t exhausted the existing treatments!”  wow, exactly what was going through my head!  Of course, because nothing was clear, he recommended a slightly different cocktail.

I emailed my oncologist as soon as I got in the car and told him the recommendation, and that I want to do it and get started. I got a positive response within minutes, and we set the gears into motion. For the record, I have slept reasonably soundly since that day.

All told, I am aware of at least six oncologists and a tumor board of unknown size who weighed in on my case, none of which offered the same plan as another.  It took over three months from our first sight of the lymph node to having a treatment plan.  I’m not quite sure how I managed to make it through with a job and a marriage intact. My husband, in particular, cannot wrap his head around how this all went down.  The way he sees it, I was the one researching and picking a treatment plan.  He was with me at the NCI appointment, and heard the doctor talk about how there is no clear course of treatment.  But he still sees it as his wife thinking she knows more than the doctor and doing his research for him. One night, he said “I just don’t get why you are sticking local instead of going up to the NCI center where the experts are.  He doesn’t know how to treat you!”

I turned to him and all I could come up with was, “Like a person. He treats me like a person”

Besides, if I had learned anything these past few months, it was that no one *knew* how to treat my cancer. It was all best guesses, and I liked that guess best.


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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One Comment

  • Gogs Gagnon says:

    Well said. I’m a prostate cancer survivor, 33-months in NED, that still very much fears recurrence. Especially whenever it’s time for a follow-up PSA test. In the meantime, I continue to enjoy life with as many distractions as possible to keep my mind active.

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