Help understand interval progression
First scan after 4 lanreotide monthly shots for pancreatic net grade 2 stage 4 w liver (both lobes) metastases.
Advice on understanding interval progression and also impact of tumors on veins? (Seeing doctor Monday)
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@susan481
Welcome to Mayo Connect. I have never heard the terms interval progression. Where did you learn of them? What is your understanding of what they mean? I too have stage 4 pancreatic NETs with liver metastasis.
Seems to be the term used when you have growth between scans. . . Appears in radiologist interpretation of comparison of scans. I think the opposite is no progression between intervals between scans …
I'm sorry you're going through this. I know it's frustrating when the first line of defense doesn't work as you hoped it would. It sounds like they are indicating that there has been progression or feowth of the tumor since your last scan. It would seem that you may need to consider other treatment options. Fortunately there are many. Captem (a combination oral chemo of capcetibine and temodar) is an often used option.
I'm not sure if I fully understand your question about the veins, but if you're wondering about a tumor encroaching into a vein, that can sometimes make surgery difficult. If that's the case, then captem may shrink the tumor to make surgery viable. There are also many other treatment options, including non systemic liver directed therapies such as embolization.
Where are you located? Are you currently seeing a net specialist?
Yes seeing NET specialist. And sorry I was unclear on two fronts - it’s my partner and there seems to be tumor encroachment in splenic and SMV veins
Appreciate you!
I had encroachment in my portal vein and smv when originally diagnosed with my pnet in 8/22. It spread mostly to my liver and some bones. Neither my pancreas nor liver were functioning properly. It can be unpleasant but treatable. Has your net specialist suggested anything at this point?
Not yet. Seeing them Monday
OK. So you folks have read the scan reports prior to meeting with your doctor? I have done that. That can be terrifying.
Yep - and quite frightening
So you might be googling words that you don't understand, which for me was almost every word initially, and getting more and more frightened with each response? I might have needed a diaper and it wasn't from the cancer. It was from reading the reports and googling.
Let me share my approach that worked for me most of the time. I am a scared cancer patient, so I allow myself to be human. Pretending otherwise proved to be counter productive. You seem to have the most important part covered by having a NET specialist from a Cancer Center of Excellence. For me, I needed that to trust the treatment process. Also, when you google stuff, only read search results from those centers of excellence. I picked three and didn't read results from anywhere else. Why fill my head with possibilities that can't be delivered at this time or are just comical. Do homework and be prepared for your doctor's appointment. Have a list of questions prepared, but let the doctor talk first. Over time, I have found that most of my questions get answered, if I let the doctor talk first. I cross those off and ask any remaining questions. My doctors really appreciated that. It immediately built rapport and made the appointments conversational and friendly even the tough conversations. That made a big difference for me.
We are all different. Our approaches are different. Our bodies are different, so treatments that work will be different. Be prepared for that. Cancer isn't a friendly foe unfortunately. You folks might have hit a bump in the road, but now the battle continues. Are you preparing for the appointment? Do you have a list of questions? What else is really scaring you folks?
I feel like we have met! Yes you are right. Even ordinary language words seem to mean different things in this context. We are working on our questions and we follow a like strategy though it’s hard to hold the questions!
I hope you know answering matters. Thank you