Pancreatic Cancer Group: Introduce yourself and connect with others

@howleegirl, it can be so terrifying to read pathology results before reviewing them together with the oncologist. I've moved your messages to the Pancreatic Cancer Support Group, specifically to this discussion:
- Pancreatic Cancer Group: Introduce yourself and connect with others: https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

I did this so you can easily connect with other members and read their posts. In particular, I'm members like @debleigl @lovingwifeterry @susan2018 @julie2018 @sw54 @ticklefeather to bring them into this discussion. Like you, they have husbands who have been diagnosed with pancreatic cancer. They've been where you are now.

Please keep in mind that the pathology report is only one piece of the diagnostic interpretation. There are treatment options for cancer that has spread to the lymph nodes. Waiting until the 18th to speak with the oncologist will be hard. There's no denying that. But we're here and ready to listen and talk.

We too are waiting on pathology results surgery 2 weeks, hoping for good results,still very scary.

Hello, I just joined this blog and find it to be extremely helpful. I am have been very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery. It also showed the presence of a 14 mm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13/23 & MRI imaging 09/26/23 showed the 1.4 cm lesion was totally contained without vascular involvement. The recommendation was neoAdjunctive therapy followed by surgery. I was started on Gemzar/ Abraxine , 3 wks on, 1 wk off, starting 9/29/23 where I am currently residing in Cincinnati Ohio.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt’s Cancer care center and was seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated lab work, did another CT scan and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured ant 1.8 cm and branching was less than 180 degrees. So in just 3 weeks, this was a new finding. But the cancer was still contained in the pancreatic neck.
My Ca 19-9 was initially 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati. Mayo measured it on 10/17 as 745.
My medical oncologist in Cincinnati repeated it yesterday. His thinking is if it is not going in the right direction to either change chemo to Folfirinox , which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt. Which would delay the surgery until at least mid- late January.
The other option is to discontinue chemo now and wait the required four + weeks and proceed with surgery, which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath lays an intersection of blood vessels. Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I STILL AM a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!. So to me, it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated extremely highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist here in Cincinnati is younger and has 8-9 yrs of experience, He seems very knowledgeable and well respected. He says he does 52 pancreatic surgeries per year. And he would do it robotically. According to Pan Can , University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase the survival percentage from 40% to 60%.

So my questions for this group are the following:
1. Opinions - regarding rather than trying the Folfirinox , which were delay surgery until mid or late January, IF I am still considered resectable by then,
my thinking is to ask for surgery now. I also had started my second cycle with my first treatment yesterday of Gemzar/Abraxane , I suppose I would still need to wait four weeks before surgery. But would need to check with my medical and surgical oncologist about that, I guess.
My hesitation about trying the FOLFIRINOX is I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for a long eight hours arduous surgery.
2. My other question is regarding where to have the surgery done. Opinions, please, if I would be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer specialist surgical oncologist, even though he only performs open procedures.
The other option would be to have it done at the University of Cincinnati, with the younger surgical oncologist, who performs 52 robotic pancreatic surgeries per year. So he must do roughly 1/3 of all the surgeries at that center.
Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA, 19/9 results. Even if it has decreased, I don’t think that would affect my desire to have the surgery done ASAP. I have read online where you can go from stage one to stage four in a matter of months.
Any comments would be greatly appreciated, thank you!

Hello @mbcfl and welcome to the Pancreatic Cancer support group on Mayo Connect. I am glad that you found this forum and that you feel it has been helpful to you. It is always good to connect with others who share the same journey.

You are asking a lot of good questions and that is important. It sounds like you are being seen by some experienced physicians as well. I'm sure that as you post with others in this group, they will share their experience with you. I hope that members such as @markymarkfl @mmatunis will share with you as well. I can see that you are concerned about the changes in the scans done at different facilities. While it is impossible to know if this was due to a change in the equipment used, the interpretation of the radiologists or perhaps a real growth in the cancer itself. It is important to put it all in perspective.

You mention being seen at the University of Cincinnati as well as the Moffit Cancer Center in Florida, but you also said, "Mayo measured it on 10/17 as 745." I was wondering if you were also seen at the Mayo Clinic in Jacksonville, Fl?

How are you feeling? What types of symptoms are you having?

Hello, I just joined this blog and find it to be extremely helpful. I am have been very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery. It also showed the presence of a 14 mm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13/23 & MRI imaging 09/26/23 showed the 1.4 cm lesion was totally contained without vascular involvement. The recommendation was neoAdjunctive therapy followed by surgery. I was started on Gemzar/ Abraxine , 3 wks on, 1 wk off, starting 9/29/23 where I am currently residing in Cincinnati Ohio.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt’s Cancer care center and was seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated lab work, did another CT scan and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured ant 1.8 cm and branching was less than 180 degrees. So in just 3 weeks, this was a new finding. But the cancer was still contained in the pancreatic neck.
My Ca 19-9 was initially 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati. Mayo measured it on 10/17 as 745.
My medical oncologist in Cincinnati repeated it yesterday. His thinking is if it is not going in the right direction to either change chemo to Folfirinox , which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt. Which would delay the surgery until at least mid- late January.
The other option is to discontinue chemo now and wait the required four + weeks and proceed with surgery, which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath lays an intersection of blood vessels. Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I STILL AM a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!. So to me, it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated extremely highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist here in Cincinnati is younger and has 8-9 yrs of experience, He seems very knowledgeable and well respected. He says he does 52 pancreatic surgeries per year. And he would do it robotically. According to Pan Can , University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase the survival percentage from 40% to 60%.

So my questions for this group are the following:
1. Opinions - regarding rather than trying the Folfirinox , which were delay surgery until mid or late January, IF I am still considered resectable by then,
my thinking is to ask for surgery now. I also had started my second cycle with my first treatment yesterday of Gemzar/Abraxane , I suppose I would still need to wait four weeks before surgery. But would need to check with my medical and surgical oncologist about that, I guess.
My hesitation about trying the FOLFIRINOX is I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for a long eight hours arduous surgery.
2. My other question is regarding where to have the surgery done. Opinions, please, if I would be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer specialist surgical oncologist, even though he only performs open procedures.
The other option would be to have it done at the University of Cincinnati, with the younger surgical oncologist, who performs 52 robotic pancreatic surgeries per year. So he must do roughly 1/3 of all the surgeries at that center.
Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA, 19/9 results. Even if it has decreased, I don’t think that would affect my desire to have the surgery done ASAP. I have read online where you can go from stage one to stage four in a matter of months.
Any comments would be greatly appreciated, thank you!

Hello, thank you for your prompt response! You are a better proofreader than I am! Yes, that should have said Moffitt repeated it and the level was 745. I guess since I was logged into a Mayo website my chemo brain kicked in ( my newest excuse for an “oops”).
I’ll see if I can add a post to clarify that, thx.
Thank you for asking, I am actually feeling pretty good. That is another reason. I think I need to deal with the devil that we know vs the devil that we don’t. I am eating pretty well, I’ve been able to maintain my weight, which I know is a big deal, and most days I am walking 30 to 60 minutes. I doubt if I would be able to do that if they switched me to the Folfironox.
And the several month delay that would cause might not make me a suitable candidate for surgery by then.
Again, thank you for your response!
Marilyn

Hello, I just joined this blog and find it to be extremely helpful. I am have been very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery. It also showed the presence of a 14 mm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13/23 & MRI imaging 09/26/23 showed the 1.4 cm lesion was totally contained without vascular involvement. The recommendation was neoAdjunctive therapy followed by surgery. I was started on Gemzar/ Abraxine , 3 wks on, 1 wk off, starting 9/29/23 where I am currently residing in Cincinnati Ohio.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt’s Cancer care center and was seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated lab work, did another CT scan and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured ant 1.8 cm and branching was less than 180 degrees. So in just 3 weeks, this was a new finding. But the cancer was still contained in the pancreatic neck.
My Ca 19-9 was initially 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati. Mayo measured it on 10/17 as 745.
My medical oncologist in Cincinnati repeated it yesterday. His thinking is if it is not going in the right direction to either change chemo to Folfirinox , which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt. Which would delay the surgery until at least mid- late January.
The other option is to discontinue chemo now and wait the required four + weeks and proceed with surgery, which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath lays an intersection of blood vessels. Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I STILL AM a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!. So to me, it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated extremely highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist here in Cincinnati is younger and has 8-9 yrs of experience, He seems very knowledgeable and well respected. He says he does 52 pancreatic surgeries per year. And he would do it robotically. According to Pan Can , University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase the survival percentage from 40% to 60%.

So my questions for this group are the following:
1. Opinions - regarding rather than trying the Folfirinox , which were delay surgery until mid or late January, IF I am still considered resectable by then,
my thinking is to ask for surgery now. I also had started my second cycle with my first treatment yesterday of Gemzar/Abraxane , I suppose I would still need to wait four weeks before surgery. But would need to check with my medical and surgical oncologist about that, I guess.
My hesitation about trying the FOLFIRINOX is I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for a long eight hours arduous surgery.
2. My other question is regarding where to have the surgery done. Opinions, please, if I would be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer specialist surgical oncologist, even though he only performs open procedures.
The other option would be to have it done at the University of Cincinnati, with the younger surgical oncologist, who performs 52 robotic pancreatic surgeries per year. So he must do roughly 1/3 of all the surgeries at that center.
Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA, 19/9 results. Even if it has decreased, I don’t think that would affect my desire to have the surgery done ASAP. I have read online where you can go from stage one to stage four in a matter of months.
Any comments would be greatly appreciated, thank you!

@mbcfl
I am a stage IV patient diagnosed 11/2021. I am not a medical professional but I am associated with a pancreatic center of excellence in atlanta and have also ventured other places for consults. I am currently NED. I have seen through the actions of the multidisciplinary tumor board that reviews my case; they want datapoints (CA19-9 and CT DNA) as low as possible when they operate. Surgery can be curative! But, if the tumor is “alive” when removed, cells have spread and there will be recurrences elsewhere. My surgeon is skilled at the DaVinci (laperoscopic) approach as well as open(which I just had) but only wants to operate when my values are as low as possible. why? Because depending on your overall health and recovery, chemo cannot begin again for 4-8 weeks! A lot can happen elsewhere in that timeframe .

I understand your anxiousness for surgery! I was elated to schedule my pancreadectomy! But it came only after 14 rounds of Fulfurinox. I started at CT19-9 of 23,000. At surgery I was down to 45. My pancreas tumor was dead on arrival.
SO-I would either get a third opinion for a tie breaker or stay on chemo if it appears to be working.

NOTE:all of our situations are different based on health, age, pre-existing conditions, etc. Just my food for thought! Pls keep us in the loop on your decision. Prayers for you and this tough decision.

@mbcfl
I am a stage IV patient diagnosed 11/2021. I am not a medical professional but I am associated with a pancreatic center of excellence in atlanta and have also ventured other places for consults. I am currently NED. I have seen through the actions of the multidisciplinary tumor board that reviews my case; they want datapoints (CA19-9 and CT DNA) as low as possible when they operate. Surgery can be curative! But, if the tumor is “alive” when removed, cells have spread and there will be recurrences elsewhere. My surgeon is skilled at the DaVinci (laperoscopic) approach as well as open(which I just had) but only wants to operate when my values are as low as possible. why? Because depending on your overall health and recovery, chemo cannot begin again for 4-8 weeks! A lot can happen elsewhere in that timeframe .

I understand your anxiousness for surgery! I was elated to schedule my pancreadectomy! But it came only after 14 rounds of Fulfurinox. I started at CT19-9 of 23,000. At surgery I was down to 45. My pancreas tumor was dead on arrival.
SO-I would either get a third opinion for a tie breaker or stay on chemo if it appears to be working.

NOTE:all of our situations are different based on health, age, pre-existing conditions, etc. Just my food for thought! Pls keep us in the loop on your decision. Prayers for you and this tough decision.