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Thread: Lates CT scan - conflicting results

  1. #1
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    Lates CT scan - conflicting results

    Got my CT scan results a couple of weeks ago. It is now 26 months since I stopped chemo before surgery in June 2017, and 2 ½ years since I was diagnosed with PC w/7 or 8 metastases in the liver. CT shows no sign of the cancer growing in my liver or around the tail of the pancreas where I had surgery. Only one spot/lesion at the liver is visible on the latest scan, 13mm which has been the same for the last 24 months. The smaller ones are not visible on this scan. There is an area just under the diaphragm and behind the abdomen that is of concern. A 15mm lesion was picked up at a PET/CT scan 4 months ago with a SUV of 5.8. This has now grown to 22mm, iow grown around 7mm the last 4 months. The area is around 150mm away from where they did surgery, so it is not likely to be scar tissue or cancer growing in the pancreatic bed. My medical team is a bit uncertain what it is, since this is not a typical place for metastases and there are no sign of cancer growing anywhere else which would indicate that there are active cancer growing. All blood samples are good, but I have had normal CA19-9 all the way. The lesion is located so it is very hard to do a biopsy, one option they want to try is by ultrasound guided gastroscopy and then use a needle to take a sample from the area to find out if is cancer or not. Alternatively they have to open me up and do surgery to get to the area. The surgeons think the cost/benefit-risk don’t justify surgery as of now. One theory is that it could be spleen tissue that is growing. My spleen was removed during the surgery, but it is known that spleen tissue might move around and start growing again according to my med team. I would be very interested in experience or knowledge with similar situations. Best wishes to all of you.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - Sept 19 CT show stabile disease - no new or enlarged mets
    Sept 19 - Liver met reduced from 12 to 10mm, lesion reduced from 22 to 19mm (no treatment since May 2017).
    Nov 19 - No changes, stabile disease

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Well, I’m pretty sure that acinar and pNET cancer tumors don’t generate CA19-9, just adenocarcinoma so that measure is fairly useless for you. An alternative is to try CA-125 which is often a backup for patients whose CA19-9 does not respond. That might help you evaluate what’s going on in the future, but not so much immediately.

    If you ever feel like surgery is an option you want to pursue and the surgical team pushes back, remind them that you do not have adenocarcinoma and there is no evidence that it will behave like adenocarcinoma. Yours hasn’t been that aggressive in the past (they’d likely agree) and that they may be willing to treat it differently. That’s not advice for treatment, but a potential argument that you can use to get what you want.

    The EUS w/FNA procedure is fairly common in PanCan but does require someone well trained and experienced to be successful. If they are reluctant, then perhaps their surgeon is not that experienced at the procedure? Would they recommend somewhere to go? My surgeon was found by asking who the doctors go to for an EUS procedure when they have a problem.

    I have not heard about the spleen regrowing after removal before.
    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 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #3
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    Thanks David for your knowledge and experience based advise, you are an importer source of information and support for many of us un this Forum. Thank you! I have tried to push for surgery, but my understanding is that the surgeons will not recommend taking the risk before they have a better overview of the situation. I have been able to convince them once using the "ACC-card", and so fare it seem to have been a success. As a side note, it seems like they have a much more offensive approach for treating ACC in Australia. On our ACC FB-group we have several stage IV patients who have had surgery, to include liver surgery. In Norway and I think also in the US they seem to be reluctant to treat ACC very much differently than PDA. I don't know the experience level on those who do the EUS w/FNA at my local hospital, which is one of the biggest in Norway. I know it is a limited capability, and now it is summer leave so I don't think it will happen before after the summer.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - Sept 19 CT show stabile disease - no new or enlarged mets
    Sept 19 - Liver met reduced from 12 to 10mm, lesion reduced from 22 to 19mm (no treatment since May 2017).
    Nov 19 - No changes, stabile disease

  4. #4
    Dessmo, haven't you had consultations with Markus Büchler, or was he your surgeon before? I thought he could do anything.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  5. #5
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    Hi Jackie, got a second opinion from Prof Buchler before they agreed to do surgery here in Norway. I am considering a new round of second opinion, but I would like to have the result from gastroscope to include biopsy first. Surgery is not ruled out by my medical team, the surgeons want more information before they decide.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - Sept 19 CT show stabile disease - no new or enlarged mets
    Sept 19 - Liver met reduced from 12 to 10mm, lesion reduced from 22 to 19mm (no treatment since May 2017).
    Nov 19 - No changes, stabile disease

  6. #6
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    Quote Originally Posted by Dessmo View Post
    Got my CT scan results a couple of weeks ago. It is now 26 months since I stopped chemo before surgery in June 2017, and 2 ½ years since I was diagnosed with PC w/7 or 8 metastases in the liver. CT shows no sign of the cancer growing in my liver or around the tail of the pancreas where I had surgery. Only one spot/lesion at the liver is visible on the latest scan, 13mm which has been the same for the last 24 months. The smaller ones are not visible on this scan. There is an area just under the diaphragm and behind the abdomen that is of concern. A 15mm lesion was picked up at a PET/CT scan 4 months ago with a SUV of 5.8. This has now grown to 22mm, iow grown around 7mm the last 4 months. The area is around 150mm away from where they did surgery, so it is not likely to be scar tissue or cancer growing in the pancreatic bed. My medical team is a bit uncertain what it is, since this is not a typical place for metastases and there are no sign of cancer growing anywhere else which would indicate that there are active cancer growing. All blood samples are good, but I have had normal CA19-9 all the way. The lesion is located so it is very hard to do a biopsy, one option they want to try is by ultrasound guided gastroscopy and then use a needle to take a sample from the area to find out if is cancer or not. Alternatively they have to open me up and do surgery to get to the area. The surgeons think the cost/benefit-risk don’t justify surgery as of now. One theory is that it could be spleen tissue that is growing. My spleen was removed during the surgery, but it is known that spleen tissue might move around and start growing again according to my med team. I would be very interested in experience or knowledge with similar situations. Best wishes to all of you.
    Here is an update from my latest meeting with my oncologist late September 2019. Short recap, diagnosed December 2016 with PC/ACC with 9 mets to the liver, largest 45mm. Then 8 cycles of 80% folfirinox which was very effective, followed by surgery June 2017 where 7,5 cm of the pancreas tail was removed. No treatment since, only CT scans every 3 months. The scan in June 2019 shoved a growing lesion just under diaphragm, which they tried to access by ultrasound guided gastroscopy w/fine needle aspiration. The doctor did not manage to find the lesion this way, the angel between esophagus and abdomen was too steep. Then I did a new CT which show no sign of cancer growing. In fact both the lesion and the spot on the liver are reduced on the last scan. The liver met now being measured to 10mm (was 13mm in June, and 45mm before chemo), and the undefined lesion went from 22 to 19mm. So all in all a very optimistic result. I had my last chemo in may 2017, so it is now 28 months without any treatment. Next for me is a type of PET scan to see if the lesion is spleen tissue. My spleen was removed during the surgery, and there are known cases where the body has stated to grow a new spleen but in a different spot.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - Sept 19 CT show stabile disease - no new or enlarged mets
    Sept 19 - Liver met reduced from 12 to 10mm, lesion reduced from 22 to 19mm (no treatment since May 2017).
    Nov 19 - No changes, stabile disease

  7. #7
    Super Moderator Top User ddessert's Avatar
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    Dessmo,

    I saw this publication recently and thought of you and ACC vs adenocarcinoma. Your decision to tell your caregivers that ACC should not be lumped in with adenocarcinoma for treatment and prognosis seems to be right on.

    Treatment for potentially resectable exocrine pancreatic cancer

    Excerpt:
    "The overall prognosis for patients with ACC is better than that for patients with ductal adenocarcinoma [11-14]. Patients with ACC tend to present at a younger age than do those with pancreatic ductal adenocarcinoma; they are more likely to have localized disease (15 versus 8 percent) and are more likely to undergo resection (39 versus 11 percent) [12]. Five-year survival rates among patients with resected disease range from 44 to 72 percent [12,13,15,16]; in one large series, the stage-stratified five-year survival rates for ACC versus pancreatic ductal adenocarcinoma were as follows [13]:

    ●Stage I – 52 versus 28 percent
    ●Stage II – 40 versus 10 percent
    ●Stage III – 23 versus 7 percent"
    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 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  8. #8
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    Thanks David for this extensive and very interesting article, not very often ACC is discussed in articles regarding PC. There are limited statistics for ACC, and the statistics I have seen are limited to a retrospective perspective based on genera PC treatment. IOW, to my understanding there is not done any clinical trial where they treat ACC differently than PDA to find the optimal treatment protocol for ACC. For ACC patients it is positive with better prognosis, but the article does not distinguish between ACC and PDA regarding treatment approach. The article states that: "Surgical resection is a prerequisite for cure of pancreatic cancer. Primary surgical resection is only recommended for patients who have no metastases". The question many of us ACC patients have is if ACC should be treated differently. We formed our own FB group two years ago, and are now counting around 70 members. There is a great variation regarding treatment strategy and disease development among the members. It would be interesting to see some ACC specific research regarding the optimal treatment strategy, this would be along with the personalized treatment therapy.

    I have done a molecular profiling, and no BRCA mutations were detected. My oncologist recommended a blood test to see if I have a BRCA mutation and they might be legible for a PARP inhibitor. I was surprised that a blood test is all that is required, and also that PARP inhibitors only worked on patients with BRCA mutations. Any comment on that David?
    Last edited by Dessmo; 10-04-2019 at 09:23 AM.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    Genetic profiling done via PanCan: No BRCA mutations, but SMAD4, CTNNB1 and MLL2
    May 17 - Sept 19 CT show stabile disease - no new or enlarged mets
    Sept 19 - Liver met reduced from 12 to 10mm, lesion reduced from 22 to 19mm (no treatment since May 2017).
    Nov 19 - No changes, stabile disease

  9. #9
    Super Moderator Top User ddessert's Avatar
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    In PanCan, PARPi were tested but did not have much efficacy, in general. Mostly just the patients with BRCA1, BRCA2, PALB2, and a few other mutations. It may, however, be more effective in combination with other drugs like we are often finding recently.

    Has your group discussed immunotherapy in ACC? In PanCan in general it seems to be associated with more mutational load (tumors with high numbers of mutations). I’m wondering if there are any trends there either?

    It may take one or more of you patients to interest one of your doctors to publish a “case study” or two of an ACC treatment success to spur more interest. Or being able to assemble the records of dozens of ACC patients under one review paper? I’ve recently been introduced to a paper written by an asthma doctor (non-oncologist) who wrote his own case report and had it published.
    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 - IMRT+Xeloda
    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-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

 

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