Struggling with bad PET results

[JuneK]

Struggling mightily here with some bad news from my recent PET scan. I think it’s all the harder because our hopes have been so high recently. After chemo & nivolumab last year, an upper right lobectomy in December, and continued nivolumab every 4 weeks since, things seemed to be going well. My surgery recovery was quite difficult, much more painful & drawn out than I expected, due to what they think is extensive nerve damage. I still have major discomfort from it, but have been doing my best to learn to deal with it. Had a CT scan in late February where nothing abnormal was noted other than a small pleural effusion. Went into this PET scan a couple of weeks ago with high hopes.

Blam, now the bad news. A completely new area of cancer, now on my left hip. Even worse, there are “areas of concern” in my right chest. Nothing definitive, but some areas of SUV uptake between 3 & 4, which they say could possibly be leftover inflammation from the surgery, but taking into account the new mets to the hip, most likely the start of new progression. I am beyond devastated. I felt like the immunotherapy was my one chance for a miracle, and now it seems to be failing. Even if not a cure, I had hoped to be able to get a few good years out of it like so many do. I have no targetable mutations to fall back on. Really struggling to fight off the despair I am feeling.

Of course my oncologist says not to give up hope. The tumor board reviewed my case on Tuesday & recommends to radiate the hip lesion as sometimes there can be “one-off” breakthrough mets. Because of the small chance that the other readings could be inflammation they want to wait another few weeks, then do another scan. They want to be absolutely sure before abandoning the Opdivo. But if there is truly more growth it will mean discontinuing Opdivo, then on to more chemo, a different kind this time.

In the meantime I have an appointment with Emory Winship Cancer Institute next Friday for a second opinion. My oncologist also suggested we start researching clinical trials.

I've waited a while to post this, in hopes that I could rally some courage and be more upbeat, but that hasn't worked out, lol. I don't even know what advice I am seeking. Searching for courage but having a harder time finding it this time around. 😔

[LouT]

June,

I'm sorry to hear about your scan, but let's take a step back and wait for there to be a clear and defined diagnosis.  I personally have not had any radiation therapy, but I've heard many here rave about results particularly for mets throughout the body.  Once the hip lesion is gone the next thing is to continue the watch on the areas they believe may be inflammation.  I'm glad you will get a second opinion, but this is not the time to become despondent.  I was the king of "catastrophizing" when I found out I had cancer (2010-colorectal, 2019-lung RLL) so I fully understand how easily our emotions can take a hold of us.  Please hold on and do your best to stay focused on the tasks at hand...radiation of the met...monitor the abnormality...confirm a diagnosis (which may even be inflammation) and then proceed from there.  Surely this is a recurrent disease, but let's not put you back at square one until you have all the data and your second opinion.

There are some good questions to ask your doctor(s) about the radiation therapy and even the immunotherapy and they can be found here.

Lou

[Tom Galli]

June,

I traveled your path but my recurrence was 3 tumors in my remaining lung after surgery. And this was well before immunotherapy was a thing. I had precision radiation to zap the recurrent disease and was "one and done" after that. So I'm a sure-kill precision radiation advocate!

I've found there is no noble cause fighting lung cancer. All the courage in the world is not going to change outcomes. You are doing the right thing. Precision radiation and a second opinion are the best next steps. You don't need courage; you've received cogent treatment recommendations. Hang in there and...

Stay the course.

Tom

[JuneK]

Thank you both, Lou & Tom. I especially appreciate your thoughts about courage, Tom. Sometimes I feel as though I'm some sort of "failure" in that regard. I do try to fake it in front of others, mostly for my family's sake, lol. I feel a little better today - I think just the act of writing out my post helped me in some small way. I guess sharing the burden lightens it a wee bit...

Thanks for listening. I have a feeling I will have many questions in the coming weeks.

Best to all,

June