A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 33

Thread: Mother had distal pancreatectomy T2N1M0. What next

  1. #1
    Newbie Regular User
    Join Date
    Dec 2017
    Posts
    19

    Mother had distal pancreatectomy T2N1M0. What next

    Hi all,

    I have talked to some kind people about my motherís situation in some other tread. Now I figure with more information revealed, I may as well create my own tread here and share the story.

    In October my motherís annual checkup reveals elevated CA19-9. Since other than that all other test results are normal, she didnít take it seriously, so was her doctor at that time. Until my father got to know it and passed the information to me, we became concerned and took her to some other specialists. Eventually in late November, she was diagnosed with pan can, after CT and MRI showed a 3cm tumor but no mets. Doctor suggested surgery, and we took it.

    Surgery was done Dec 3rd. Now with biopsy from the removed mass and harvested lymph nodes, it turns to be PDAC, T2N1M0. Cancer has got into a few closest lymph nodes, but other harvested ones are negative. CA19-9 has dropped from 280 to 180, but I fear that with lymph spread, the enemy is still hiding in the dark.

    I think our next step is to chemo and maybe radiation. Ive seen GEM, S1, GEM/xeloda, GEM/S1, FOLFIRINOX, nab-p and so many others. Iím not really sure which is best for her. Of course we will go to doctors and ask for opinions. But as cancer is such a mystery, Iím not even sure if doctors know everything going on out there. As an engineer and researcher myself, I want to put my mind on it and collect every single piece of information and evidence. Maybe thereís a chance.

    My grandma died of breast cancer, and my mother also had some benign breast hyperplasia tissue removed. So i suspect she may have an inherited genetic defect, which leads to PDAC. So maybe we will go that route and find out if thereís any regimens that can work better in her case.

    Thank you all in advance. Any suggestion or share of personal experience is welcomed.
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Successful distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes. CA19-9 dropped to 60 kU/L 2 weeks after surgery.

  2. #2
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,781
    Blog Entries
    7
    Note that most statistics thrown around cancer are describing the median patient. That's useful as far as it goes, but I like to look deeper to see, 'what are the attributes of the outliers?', and how can I become one of them?

    I think that no lymph node involvement is the best outcome, but some prognostic nomogram articles say that <10% of harvested nodes is just as good. Above that, it gets more likely for earlier recurrence.

    S-1 chemo is similar to Xeloda (aka Capecitabine), but is not approved in the USA. In Asians, it is associated with better outcomes and fewer side effects, but Caucasians have had more side effects.

    For adjuvant therapy, the choices may be very limited. Gem/Cap is the best combo from recent clinical trials (again, median patient).

    If the genetic testing finds something, it may point towards more outlier-specific treatments that could be jumped at for better outcomes.

    Another option is available if the pathology kept some of the tumor removed during surgery. It's probably too late for live tissue testing (no good if frozen), but molecular/genetic testing of that tumor might also lead to some suspected promising treatments. Any tumor cells left behind will be genetically similar. I think you'll find Doctor resistance to such testing as they think the chance of rewards are not worth the cost and effort, but you're asking for any advantage, aren't you?

    I think that just after surgery, there is no stroma left to deal with. The stroma only gets to be a problem once the tumor is 2cm or larger. That makes us look at different drugs. Combos that work in the metastatic setting may be overkill. In fact drugs that FAILED in metastatic patients with lots of stroma might be looked at. So while I'd look to those drugs, I would not limit myself to only the ones that did well in stage 4 patients. I think that gives you more opportunities.

    Also, look up phase 2 or 3 adjuvant clinical trials. With the low tumor burden (if any), these might give you some more options.

  3. #3
    Newbie Regular User
    Join Date
    Dec 2017
    Posts
    19
    Thanks for your reply! Yes, I am asking for any advantage. Statistics never work in favor of any patients with this horrible disease. To me, there's no 5 year survival rate of 20% or 2%. It's 1 or 0. I think we have to prepare for metastasis, as N1 indicates a higher likelihood of metastasis in the future, on a baseline that's already pretty high.

    So when you mentioned options of adjuvant therapies are limited, did you mean that therapies like GEM/Cis and FOLFIRINOX are therapies for unresectable tumors? So for my mother's case, does that mean we should use adjuvant therapies to suppress cancer before recurrence, and resort to other therapies after recurrence? What role can radiation play in this whole treating process? Meanwhile, I will do some search following your comment.

    I think we've asked doctors to keep some tissue samples, but im not sure if it's frozen or live. How much difference does it make? Can genetic testing still be done on frozen cancer tissues?

    Thanks again!
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Successful distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes. CA19-9 dropped to 60 kU/L 2 weeks after surgery.

  4. #4
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,781
    Blog Entries
    7
    The most-studied treatments are in the stage 4 setting, where there are few other options for patients. There are a lot of failures, too. What I'm saying is that these failures in stage 4 should not necessarily mean they won't work in the adjuvant (after surgery) setting.

    I think that radiation is recommended after surgery when there were poor, no, or positive margins during resection. Something to keep in mind is that radiation is like a silver bullet. You may only get one. It can be difficult to know when to use it and when to save it. And if you wait until metastases develop, it may no longer be useful to you. You have to learn to make decisions with imperfect information. Some engineers get into an 'paralysis by analysis' situation - try to find your way out of it.

    With live tissue samples, they can be grown and tested against a variety of chemotherapy agents at companies like Rational Therapeutics. Once they are frozen, that is no longer possible.

    Genetic tests can be done on frozen sample, if it's large enough. However, if cancer stem cells are a things, I don't think they can be isolated and identified after freezing.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  5. #5
    Newbie New User
    Join Date
    Sep 2017
    Posts
    2
    Quote Originally Posted by mel109 View Post
    Thank you all in advance. Any suggestion or share of personal experience is welcomed.
    My father IS almost in the same situation with T2N1M0, but he had the tumor in the head of the pancreas. He makes his first year this month. Until now his treatmeant cosisted in Gemcitabine-Gemzar 2 infusions per month and after 5-6 months were added capecitabine pills 2 per day. Afer the surgery his oncological treatment was continous. He is also diabetic and takes insulin and pancreatic enzymes.

  6. #6
    Newbie Regular User
    Join Date
    Dec 2017
    Posts
    19
    Quote Originally Posted by octavc View Post
    My father IS almost in the same situation with T2N1M0, but he had the tumor in the head of the pancreas. He makes his first year this month. Until now his treatmeant cosisted in Gemcitabine-Gemzar 2 infusions per month and after 5-6 months were added capecitabine pills 2 per day. Afer the surgery his oncological treatment was continous. He is also diabetic and takes insulin and pancreatic enzymes.
    Thanks for your reply. I hope your father will get better.

    I'm on a debate of whether to have adjuvant or not. I talked to a surgeon today and he basically said that adjuvant can't change the inevitable. But I don't want to roll a dice with such poor expectation.
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Successful distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes. CA19-9 dropped to 60 kU/L 2 weeks after surgery.

  7. #7
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,781
    Blog Entries
    7
    I used to believe like your surgeon and it may be true. But I think there's strong evidence it will at least delay a recurrence. There's weaker evidence that it will prevent a recurrence. Certainly there's no evidence it prevents all recurrences. (Notice I'm trying to narrow the range of outcomes from both sides).

    The best evidence I know that it may actually prevent some recurrences is when I look at the 5-yr survival rates after adjuvant treatment vs those that did nothing. It's about doubled with the adjuvant treatment. The evidence would be much stronger if the recurrence rates were halved, but the data only shows survival. That means a significant delay in recurrence could explain this. Still not bad.

    I was in a similar situation in late 2012 with the surgeon saying I needed no adjuvant treatment. I found a low burden clinical trial in immunotherapy that required shots only every 6 months. I'm sitting in the Johns Hopkins waiting room right now for my 9th boost shot.

  8. #8
    Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Location
    Wylie, Texas
    Posts
    1,781
    Blog Entries
    7
    One universal truth: surgeons are supremely confident in themselves. When they say that they got it all (which they say often), it means they got everything they could see.

  9. #9
    Newbie Regular User
    Join Date
    Dec 2017
    Posts
    19
    Hi David, i think in the JASPAC study, the recurrence rate of S1 group is slightly lower than GEM group (66% vs 78%), at least in the span of study. In the CONKO-001 study, the 10 year survival rate in GEM group is higher than the observation group. These are all positive evidence on efficacy of adjuvant therapy, though not significant. After all, reoccurrence rate is like what, 80%? Anyways, I will be forever grateful if my mother can survive for another 10 years, watching me get married and have kids.

    I agree with you on surgeonís opinion. We will consult more doctors for sure.

    Also, Iím so happy for you that the clinical trial works in your case.

  10. #10
    Newbie New User
    Join Date
    Sep 2017
    Posts
    2
    Quote Originally Posted by ddessert View Post
    One universal truth: surgeons are supremely confident in themselves. When they say that they got it all (which they say often), it means they got everything they could see.
    I think no surgeon will say that for his pride.

 

Similar Threads

  1. Total pancreatectomy
    By tfinne in forum Pancreatic Cancer Forum
    Replies: 5
    Last Post: 04-25-2015, 07:01 PM
  2. Replies: 7
    Last Post: 04-02-2014, 09:33 AM
  3. Sclerotic Lesion (Diaphysis) of Left Distal Femur
    By devtay25 in forum General Cancer topics
    Replies: 1
    Last Post: 10-20-2013, 02:34 AM
  4. 1 1/2 Months After Distal Pancreatectomy of Husband
    By Moni in forum Pancreatic Cancer Forum
    Replies: 0
    Last Post: 05-16-2012, 09:10 PM
  5. Best surgeon to perform distal pancreatectomy in the US
    By salzouby in forum Pancreatic Cancer Forum
    Replies: 4
    Last Post: 03-16-2011, 05:12 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •