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  • Writer's pictureBurt Rosen

Scanxiety - It's a real thing

Updated: Dec 19, 2023

Note: Today's post might be a little more intense than usual. When I started my blog, I did it to be therapeutic for me and to help others. This post is a "therapeutic" type of post.

Today (12/19) is a big day for me. I leave for OHSU soon to get two CT Scans (one for chest and one for abdomen/pelvis), I get my blood drawn for my Urologic Oncologist (the one who deals with my Kidney Cancer which we haven't dealt with yet but I see her again on 1/2/24) and an appointment with my NETs Specialist Oncologist, Dr. Pegna.

Usually, days like this roll off of my back but today just feels different. Not because I am expecting any type of bad news, but more because of the conversations I have to have with Dr. Pegna about the next steps.

When they did my liver surgery in June, they were going to take out as many of the tumors in my liver as they could (I still have 10), take out my gallbladder (treatments for NETs can often result in gall bladder problems) and if I was doing ok, they were going to remover the primary tumor in the tail of my pancreas and my spleen. I didn't do okay and lost too much blood so they decided to stage me, which means pushing the surgery into two parts (they did do the liver and gall bladder pieces). I still have the pancreas and spleen to do (It's obviously my decision as is everything with my care but I want to have the remaining surgeries done).

In September, after my last scans, Dr. Pegna told me he felt I could have another three months before my next scans, and at that time, we'd have to discuss the pancreas surgery. That time is today (12/19).

So my anxiety stems from a few places. First, will the scans show anything that I am not already expecting? That's always a risk and what causes Scanxiety. Am I spreading or growing? I can let you know later today. The not knowing is concerning and, although I love living in the grey in most areas of my life, I'd prefer to know what is actually going on with me. So let's just say the scans themselves cause about 30% of my anxiety today.

The second source of anxiety for me is a little more philosophical. What is better for me? Short-term vs long-term with unknown variables in both. Obviously, if Dr. Pegna says I am getting worse, spreading, growing, etc I will have to have the surgery or more advanced treatments (remember, I currently only get one shot a month for my tumor treatments to stop growth).

But what if I am still "solidly stable"? On the one hand, I'd love to get another "blip" as I call them (3 month periods between scans when I can do whatever I want) but blips have potential dark clouds over the end since I will have more scans. I love the blips, and I have had a lot of fun and lived a lot of life during them (Montana, Banff, California, New York City, etc). A blip for me is a little bit like knowing the next 3 months will be sunny and 70, but month 4 could be 40, rainy and overcast.

But, would I rather keep getting blips and enjoying life in 3-month increments but never knowing what will happen in month 4, OR do I want a highly invasive surgery with a long recovery time that I can hopefully start moving on with my life after (my recurrence potential is always there and I will be in treatment for the rest of my life so I will not be "cured")? The surgery will reduce my tumor load and help me reset my body but at a big cost to me, my family, and those around me. There are also no guarantees and, as we saw after my liver surgery, there are definitely a lot of risks involved. This is what makes up the other 70% of today's anxiety for me. Being in control should help, but, as we know, anxiety is not about logic or control.

So today's scanxiety is on all of those fronts. The scans and fear of the unknown, the decision-making about what's best for me going forward, and the short-term and long-term (with both having unknown variables) attached to them. I will for sure keep you updated, but I really needed to write this blog post to help me process.

As I said when I started this, please don't feel sorry for me. I am doing great overall and feeling really good about what I am doing. I still consider myself very lucky. This is a bump in the road but it's on my mind.

Update (12/19 at 5:47 pm): The day went great. My blood work all looked good and my scans came back showing no growth and no spread, in fact, it even looked like my tumors had shrunken in some places! And the best news? Even my Dr. agrees that I don't need the surgery right now so I get another blip until Feb/March when I get my next scans. I am feeling great about things. As I wrote above, the writing is therapy for me and after writing my article I came to the conclusion that I will take all of the blips that I can get and put off surgery as long as I can. Can you say huge sigh of relief? I can! I am so lucky and so grateful for everyone around me and my team. I know it won't always be easy, but it sure as shit is nice when it is!

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20 dic 2023

Such great news, Burt! Where the scans showed shrinkage in some areas is beyond good news! Congratulations for doing so well. Love and hugs, Carolyn

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