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New, overwhelmed: What's microsatellite stable?

Pancreatic Cancer | Last Active: Aug 27, 2023 | Replies (17)

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@markymarkfl

In case you weren't already familiar with the "T2" meaning, it's a scale called the "TNM" scale, different than the "Stage 1,2,3,4" that we hear most often.

In its complete form, the staging value is T#N#M# where the T stands for tumor size, N stands for node involvement, and M stands for distant metastasis. The # after each letter represents how large or how much.

There's a good description of it with examples here: https://www.cancer.gov/about-cancer/diagnosis-staging/staging

If your friend's was only described as "T2," it might imply N0 (no node involvement) or Nx (can't be measured), and might imply M0 (no metastasis) or Mx (can't be measured).

If there is no node involvement and no metastasis, then it _might_ be described as Stage-II on the familiar scale, or "resectable" on the surgical scale. Resectable is what you truly want, as surgery (complete removal) is the most dependable cure.

Make sure to ask if it is resectable. If the answer is no, ask why. It could mean there is vascular involvement or something else that really complicates the surgery. Sometimes it means they suspect metastasis but just haven't found it, and sometimes is just means the overall health of the patient could not withstand surgery.

If there is vascular involvement or some other anatomical complication, they might recommend chemo and/or radiation to try and shrink it before surgery. If that is the case, you might also begin by getting a second surgical opinion from someone who is reputable and experienced doing more complicated/aggressive surgeries others turn down. (Dr. Christopher Wolfgang at NY Langone might be a good one.)

If there's no evidence of metastasis, I lean toward surgery right away, based on the 6 months of "neoadjuvant" (before surgery) chemo being so ineffective in my case.

If you can't avoid chemo first, ask which regimen and why -- in particular if one or another is better suited to his genetics (hereditary and tumor-specific). They tend to go with a "Standard of Care" regimen first, which is probably Folfirinox if he's in good physical condition, or something starting with Gemzar (gemcitabine) if he's not. In my case (younger, athletic, Stage-II, resectable), I got the Folfirinox first. When my cancer came back after surgery, I got Gemcitabine + Abraxane + Cisplatin, and I've had a much better response to that. Not sure if it's because of my genetics (ATM mutation) or something else, but I wish they had tried that first.

Based on the lack of MSI, it seems they're doing the genetic tests they need to do, but be sure to ask if there will be any more; if so, which ones and how often.

One aspect of the tumor biology is its ability to repair itself and continue replicating. If it suffers some kind of DNA damage, it might have trouble replicating, and different drugs can target different aspects of DNA Damage Repair. To my knowledge, the tumor could be prone to single-strand breaks or double-strand breaks. The DNA testing they did may or may not reveal that, but it's another question to ask. I don't have the biology background to process all this; I just make sure it gets asked and addressed. 🙂

If radiation is recommended, ask what type. I don't know much about it, other than Proton Beam machines being more precise than traditional machines. Other forum members here can chime in with more details and options.

If you can't get someone to do surgery first, at least ask 1) If there are ANY clinical trial options that might be better than the Standard of Care (probably not for a first diagnosis and no prior failures of other treatment, but based on his status there might be, so do ask); ask 2) what is their roadmap for this treatment (how long before they decide whether to switch gears) and what they would do next if necessary. That will help you plan for the future and start the long process of getting future appointments with other specialists.

When it comes to the actual surgery, I think the procedure for the tail of the pancreas is called "distal pancreatectomy." (If you hear/read about the Whipple procedure, skip that -- it's for cancer in the head of the pancreas.) With distal pancreatectomy, I understand they usually remove the spleen as well, but ask for details.

Depending on how much pancreas needs to be removed, he may lose some ability to produce enzymes and/or insulin, and thus need supplementation after the surgery. Ask about that as well. And the surgery could be open, laparoscopic, or robot-assisted laparoscopic. One more question for the session...

Finally, another important detail is the overall surgeon and center -- their volume and experience. You can get those details elsewhere (e.g., PanCan, NPF, etc), but you want to get surgery (and ideally all treatment) at a center of excellence.

I hope it all works out; sounds like it can. And please thank him for his service to our country!!!

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Replies to "In case you weren't already familiar with the "T2" meaning, it's a scale called the "TNM"..."

thank you SOOO much for this information...we're getting his care at University of Virginia which is a Cancer Center of Excellence...the surgeon we have an appt with on paper has excellent ratings and people i've talked to around the hospital seem to love him. we'll see 🙂 but i have hope...its almost a 5 hour drive for us but i'd MUCH rather trust them than these local folks...sorry don't have much confidence in our local docs..
i will certainly thank him for you.. he's a British vet (permanent green card holder)who moved to the US 16 yrs ago and worked as a private military contractor for the US after coming here. So he doesn't qualify for a lot of assistance (ie our vet care, disability etc)..he has no family left in England and no family here...he's the last one so my hubby and I and other friends are all he has in the way of "family".
From my understanding, we are meeting with the surgeon first to discuss surgery options, if its an option, whats involved, will it be done first etc and the following week we are meeting with an oncologist to discuss the rest of it... yes its two separate long drives but to wait on a day when we could do both was going to be at least a month out and tbh knowing how aggressive pancreatic cancer can be (my stepmom passed from it less than 3 months after she was diagnosed, it had already spread all over) i'd rather "get the ball rolling than sit around and wait on someone else to do it" so to speak and if it means two long drives so be it.
i DO already know that UVA has something like 11 clinical trials going atm for various pancreatic cancer treatments atm so who knows, he may fall into one of those.. we'll see
thank you so much for taking the time to give me all this info.. its exactly the kind of stuff i need..