Sharing my cancer story. It might be helpful, it might be interesting, it might be informative.

Ugh, spleen!

I had an MRI this month, and an appointment with my oncologist. The good news is that my tumors continue to stay “stable” and don’t show any growth of note. Hip hip, hooray!!! He thinks the monthly Lanreotide shots have been doing their job, so I’ll continue those indefinitely. As I’ve said before, somatostatin analog…

It’s complicated

This post is a rant about the complexities of my disease. So, buckle up. Neuroendocrine cancer is rare; some sources say it affects as few as 6 in 100,000 people worldwide. There are just not enough people studying this. There are not enough specialists. There are not enough new doctors entering this field. There are…

Scanxiety!

This past week I had an echocardiogram, bloodwork, an MRI, and then an appointment with my oncologist to discuss all the results. Verdict: my various tumors are growing so slowly they are considered “stable”, and although I do have new tumors, they are still quite small. In Cancer World, that is all GREAT NEWS, and…

The waiting game continues

So, long story short, even though my scans in September showed “numerous” new tumors in my liver, lymph nodes, spleen, abdominal cavity, and right breast, my oncologists think I still don’t yet have enough tumor load to merit another surgery and/or a new treatment called PRRT (Peptide Receptor Radionuclide Therapy). I am both frustrated and…

Here we go again…

On Tuesday I had a 64Cu DOTATATE PET scan. This is only my second time having this particular scan, and last time in 2022 it revealed that my cancer had metastasized in a big way, which completely blindsided me. This time around I am much more mentally prepared to hear “bad news”: I belong to…

F.A.Q. & T.L.D.R.

– Updated 8/26/25 – Looking for a quick review of my cancer journey? You’ve come to the right place! What kind of cancer do I have? Neuroendocrine (I’ve also had thyroid cancer, but after a thyroidectomy in 2016 there have been no further complications). Neuroendocrine cancer is considered a rare cancer, affecting 6 in 100,000…

Schrödinger’s cancer (ahem, cat)

It’s a known fact that my particular neuroendocrine cancer tumors don’t show up very well on CT and MRI scans. Unfortunately that’s just the way it goes for some people. It wasn’t until I was given a Dotatate PET scan in July 2022 that I learned just how widespread my tumors had spread. So, although…

Free stuff for cancer patients!

– Updated 3/10/25 – I’d been having trouble finding a good, ad-free list of free activities and experiences for cancer patients/survivors, and so decided to make my own collection, organized by who they are for. None of these are virtual nor have residency requirements, other than living in the US. Not listed: support groups, grants,…

Tales from a clinical trial

I’ve wrapped up my first (but hopefully not last) clinical trial! Last October I was tipped off about this trial by my group facilitator at the Harmony Hill 3-day Cancer Retreat I attended. She suggested I might want to apply. The doctors running this trial are looking at the effects psilocybin has on relieving anxiety…

The right care team

I’ve settled on one particular support group as being the best fit for me: LACNETS, which is a 90-minute Zoom meeting once a week. I like it for several reasons. It focuses on my my specific kind of cancer (neuroendocrine), it’s a good blend of emotional support and practical advice, it’s very professionally run, and…

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About Me

Hi, I’m Ellen. I am a mother, a wife, and a lover of books and libraries. I love my pets, my home, and my life! If you are new to this blog, welcome! The first post is here.

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cancerstorygo@gmail.com

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