Why surgery first vs chemo/radiarion first?

Posted by happyjack @happyjack, 4 days ago

I had a tumor push closed my liver and pancreas duct. My gastro doc placed a stint via endoscopy to open the liver duct and the pancreas duct is still closed. A surgeon was brought in and said no need for any more testing as I have all the classic textbook cancer signs of the tumor imaging and blood cancer markers are high. I am scheduled to have Whipple surgery July 12th. And then as soon as I recover from that Chemo.

The question I have is why I am having surgery first rather than Chemo and radiation of the tumor? My stepsister had a small cancer in her breast and the did Chemo and radiation first and killed the cancer before removing it with surgery. And I see others on this site that have Chemo and Radiation first and then Whipple surgery.

Not that it makes any difference as I will follow my doctors' advice it is just something I would like to understand.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

My experience, I had a 5.5 cm cyst on the tail. My surgeon at MSK and his team were convinced, also CT/MRI/Blood all indicated benign or pre-cancerous. No neoadjuvant therapy. I had the distal pancreateomy performed, with removal of spleen and gallbladder. Turns out 1.5 cm of my cyst was cancerous and it was in one lymph node. I'm starting chemo 7/15/24. I know that there are some doctors who prefer to do the neoadjuvant chemo, surgery and then adjuvant chemo. I guess it all depends. Mine was understandable, but if your already showing cancer, you may want a second opinion on whether you should have neoadjuvant therapy....good luck to you!

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@happyjack , Those are good and fair questions to ask!

Main thing is most surgeons won't perform a Whipple unless they're very sure your cancer hasn't spread to other organs, or at most to a few definitely resectable lymph nodes. A lot of Whipples begin with an exploratory laparoscopy in which the surgeon visually inspects as much of the abdomen as possible with cameras before actually performing any surgical interventions. Lots of Whipples are aborted early when the surgeon finds signs of cancer elsewhere that pre-operative scans didn't pick up.

Pancreatic cancer is notorious for spreading early and undetected to other organs/locations, and the Whipple procedure is invasive enough to complicate recovery and delay systemic adjuvant treatment that might be needed after surgery. They've found that many patients are too weak to tolerate chemo after Whipple and never get any, but their cancer still comes back and they're just worse off from having the surgery (digestion and diabetic issues, etc).

Some reputable surgeons do believe in performing the surgery first, as there is evidence cancer does __sometimes__ spread during pre-operative (neoadjuvant) treatment. Aside from imaging, CA19-9 levels __sometimes__ provide an idea how pervasive the otherwise-undetected cancer might be. In a 2020 presentation, Dr. Matthew Katz (MD Anderson) noted that performing surgery on patients with pre-op CA19-9 levels greater than 1000 provided no benefit to overall survival (while also noting that data was based on pre-Folfirinox studies).

Some of the very blunt questions for your surgeon would be what are your pre-op CA19-9 levels, and what are the chances of a complete cure (total resection of cancer) from the surgery, what are your health tradeoffs of having or not having the Whipple, and which chemo regimen you'll be on after the surgery, and how many Whipples per year he performs. I hope you've also asked him the questions about sending tumor tissue out for next-generation sequencing (e.g., Tempus) and microscopic residual disease (e.g., Signatera) testing and gotten satisfactory answers.

I do hope all goes well, but I am somewhat leery of surgeons at smaller hospitals who want to pad their resume (and maybe their wallet) by performing Whipples that are better off left in more experienced hands.

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@markymarkfl

@happyjack , Those are good and fair questions to ask!

Main thing is most surgeons won't perform a Whipple unless they're very sure your cancer hasn't spread to other organs, or at most to a few definitely resectable lymph nodes. A lot of Whipples begin with an exploratory laparoscopy in which the surgeon visually inspects as much of the abdomen as possible with cameras before actually performing any surgical interventions. Lots of Whipples are aborted early when the surgeon finds signs of cancer elsewhere that pre-operative scans didn't pick up.

Pancreatic cancer is notorious for spreading early and undetected to other organs/locations, and the Whipple procedure is invasive enough to complicate recovery and delay systemic adjuvant treatment that might be needed after surgery. They've found that many patients are too weak to tolerate chemo after Whipple and never get any, but their cancer still comes back and they're just worse off from having the surgery (digestion and diabetic issues, etc).

Some reputable surgeons do believe in performing the surgery first, as there is evidence cancer does __sometimes__ spread during pre-operative (neoadjuvant) treatment. Aside from imaging, CA19-9 levels __sometimes__ provide an idea how pervasive the otherwise-undetected cancer might be. In a 2020 presentation, Dr. Matthew Katz (MD Anderson) noted that performing surgery on patients with pre-op CA19-9 levels greater than 1000 provided no benefit to overall survival (while also noting that data was based on pre-Folfirinox studies).

Some of the very blunt questions for your surgeon would be what are your pre-op CA19-9 levels, and what are the chances of a complete cure (total resection of cancer) from the surgery, what are your health tradeoffs of having or not having the Whipple, and which chemo regimen you'll be on after the surgery, and how many Whipples per year he performs. I hope you've also asked him the questions about sending tumor tissue out for next-generation sequencing (e.g., Tempus) and microscopic residual disease (e.g., Signatera) testing and gotten satisfactory answers.

I do hope all goes well, but I am somewhat leery of surgeons at smaller hospitals who want to pad their resume (and maybe their wallet) by performing Whipples that are better off left in more experienced hands.

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Thank you for the information. A few things to note. I am already diabetic. And I have been on Creon for months. The stint did open up my Liver duct but not my Pancreas duct. I have had digestive issues since last December due to lack of enzymes and it took a while for me to figure it out and get my gastro to put me on Creon. And I kept asking to have my pancreas checked with no luck. I am on Warfarin for my blood clot history and without enzymes I used up all my vitamin K and my INR target range 2-3 spiked to 9. My GP doctor sent me to the hospital and while there getting an IV of V K they did blood work and found my Bilirubin was 12. The Bilirubin increased by 2 each day I was in the hospital and topped out to 20 the morning they placed the stint to open the liver duct. The tumor had pushed closed my pancreas duct and then also the duct from my liver. The next morning my Bilirubin was down to 11. INR and Bilirubin normal level is 1 for each of them.

The surgeon is the best local doctor I have available. My brothers supervisor had colon and liver cancer and surgery on those done by the same doctor. The supervisor also has a son and daughter in the medical field in town and say this is the best doctor. There is a Cancer Center of Excellence center in KC at KU med center. KU also has medical offices and a hospital down here in Wichita. I just do not want to drive 3 plus hours up to KC for treatments.

The doctor did a second CT scan with full die to look for cancer in other places and found no obvious growths. I am thinking that the doctor thinks my best chance is to move as fast as possible with surgery. And not to do more testing and procedures poking the tumor and waiting for results. There are 2 locations in town that do PET scans. But it seems things are so busy wait times are in the weeks or months for scans. PET scan will be done at some point. The tumor will be sent off for testing and the results will be used to develop Chemo treatment. At least that is the plan.

The hospital I was at for my high INR and Bilirubin called in the surgeon and not an Oncologist. So it seems to me that this is the local policy of surgery first. Guess if I was at a different location or state that it might be Chemo/Radiation first. May even have something to do with insurance as each state is responsible for that state's insurance. Wichita metro area is listed as 4 counties and a population of 653K. Hutchinson is not included and is close. If that was included, then the population would be higher. There are 3 main hospitals in Wichita. Then the KU hospital NE and is listed as Andover. There is a 5th way out west called St. Teresa. And the hospitals have places around town for testing and outpatient surgery and more. So this is far from a very small town with one doctor who has the power to make policy. But for sure not a place that will draw the very best doctors in the country or world.

I do not want to pile up a lot of medical debt either. I will just stay local and do whatever local policy is. And whatever will be done for the approved Medicare amount. If and when I find out the cancer has spread, I am leaning toward just as much comfort care as possible for whatever time is left. I figure that I will have even more difficulty with digestion and controlling my diabetes after this surgery. Only reason I am trying this is that my Mom is still alive and she just lost her sister (my aunt) last year and I want to try to make it a while longer for her. I'm just worried that what time I have left will be spent suffering from treatments.

This doctor has said he has done many of the Whipple surgeries. I have had a previous abdominal surgery and he said he would try to do this by laparoscopy, but scar tissue may require he open me up. That makes more sense now with the information that he will look around first for additional cancer before doing the Whipple. His plan is the Whipple surgery then Chemo. No radiation as the tumor will be gone. And that my quality of life will return in a year. Just have to wait and see how things turn out.

Thank you again for the information.

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@yliddy

My experience, I had a 5.5 cm cyst on the tail. My surgeon at MSK and his team were convinced, also CT/MRI/Blood all indicated benign or pre-cancerous. No neoadjuvant therapy. I had the distal pancreateomy performed, with removal of spleen and gallbladder. Turns out 1.5 cm of my cyst was cancerous and it was in one lymph node. I'm starting chemo 7/15/24. I know that there are some doctors who prefer to do the neoadjuvant chemo, surgery and then adjuvant chemo. I guess it all depends. Mine was understandable, but if your already showing cancer, you may want a second opinion on whether you should have neoadjuvant therapy....good luck to you!

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Thank you for the good wishes. Doctor said blood cancer markers were 1500-1600. Said that did indicate cancer as it was high. Not sure exactly what that test was. They do know I have a tumor in the head of my pancreas at the junction of the liver duct and pancreas duct. I am not sure the reason for not having neoadjuvant treatment. Just a guess in that the wait time would be long. I feel that it may have already spread. I would have had more confidence if this all would have taken place 6 months ago when I started having trouble. They will be taking lymph nodes also when they do the Whipple. I guess I will find out in a little over 2 weeks. Best of luck to you with your chemo.

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@happyjack

Thank you for the good wishes. Doctor said blood cancer markers were 1500-1600. Said that did indicate cancer as it was high. Not sure exactly what that test was. They do know I have a tumor in the head of my pancreas at the junction of the liver duct and pancreas duct. I am not sure the reason for not having neoadjuvant treatment. Just a guess in that the wait time would be long. I feel that it may have already spread. I would have had more confidence if this all would have taken place 6 months ago when I started having trouble. They will be taking lymph nodes also when they do the Whipple. I guess I will find out in a little over 2 weeks. Best of luck to you with your chemo.

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@happyjack Wishing you all the best with your treatment, stay strong!!!

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I would say you have excellent doctors bad doctors would want to have you do chemo and other things first what happens then you become weak and it even gets to the point in some cases where they won’t do the operation because you’re now too weak.
Let this excellent doctor do his full Whipple operation and then sit back and see if you need the chemo and radiation.
I had to Whipple first and needed no chemo or radiation afterwards they tested me for two years afterwards trying to see if I really needed any chemo or radiation, I didn’t that was in 2013 all has been well since then! Good luck and Godspeed.

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@silver182

I would say you have excellent doctors bad doctors would want to have you do chemo and other things first what happens then you become weak and it even gets to the point in some cases where they won’t do the operation because you’re now too weak.
Let this excellent doctor do his full Whipple operation and then sit back and see if you need the chemo and radiation.
I had to Whipple first and needed no chemo or radiation afterwards they tested me for two years afterwards trying to see if I really needed any chemo or radiation, I didn’t that was in 2013 all has been well since then! Good luck and Godspeed.

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@silver182
Congratulations! What a great story. They must have caught your cancer early. Need more stories like yours!

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Yes very early, very lucky! Level 1 at the ampulla valve. My symptoms were horrible, liver & pancreatic fluids backed up “ampulla valve would not open” for almost three months! Felt like I was being bit/ eaten by huge Red ants. They would crawl & bite everywhere 24 hours every day.
My first ERCP the doc burned valve open & all my symptoms went away!! Totally. Now the problem was finding and measuring cancerous tissue. 3 more ERCP’s and finally upon my request, sample sent to John’s Hopkins that finally verified level 1. ERCP doc then immediately got my Whipple referal, all done in 2013.

REPLY
@silver182

I would say you have excellent doctors bad doctors would want to have you do chemo and other things first what happens then you become weak and it even gets to the point in some cases where they won’t do the operation because you’re now too weak.
Let this excellent doctor do his full Whipple operation and then sit back and see if you need the chemo and radiation.
I had to Whipple first and needed no chemo or radiation afterwards they tested me for two years afterwards trying to see if I really needed any chemo or radiation, I didn’t that was in 2013 all has been well since then! Good luck and Godspeed.

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Thank you for that post. As I understand it I will have Chemo as soon as I recover from the surgery and the testing of my tumor is done to determine what Chemo I will have. As I have a high number of cancer markers in my blood, they are completely sure the tumor is cancer and not a benign growth.

And I guess if I understand things that the surgeon will look for other places where the cancer has spread first and if he sees any he will abort the Whipple. I have decided I am in for one surgery and one round of Chemo.

Your post does give me hope and I think others as well. Hope you never have another cancer.

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@silver182

Yes very early, very lucky! Level 1 at the ampulla valve. My symptoms were horrible, liver & pancreatic fluids backed up “ampulla valve would not open” for almost three months! Felt like I was being bit/ eaten by huge Red ants. They would crawl & bite everywhere 24 hours every day.
My first ERCP the doc burned valve open & all my symptoms went away!! Totally. Now the problem was finding and measuring cancerous tissue. 3 more ERCP’s and finally upon my request, sample sent to John’s Hopkins that finally verified level 1. ERCP doc then immediately got my Whipple referal, all done in 2013.

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My surgeon said my cancer level would be 1-3 as they have not found any other cancer yet. And from imaging he would guess I have level 2 or level 3. I have had symptoms for 6 months of fat not being digested. Actually, a lot longer than that it just went to full steatorrhea last December. And I am on blood thinners and the blocked pancreas duct not only stop me from digesting fat I was not getting any vitamin K. Caused my blood to get supper thin and a hospital trip for that. Blood test in the hospital showed super high Bilirubin and sonagram showed budging ducts in my liver. Bilirubin was climbing every day I was in the hospital, and I was very Jaundice. My tumor was at the junction of the liver and pancreas ducts and had pressed them both closed. A stint was placed via endoscopy to open the liver duct in the pancreas. The pancreas duct is still blocked by that stint. The morning after the stint was placed my Bilirubin was down from 20 to 11. I was put on Creon pancreas enzyme medication months ago and they help but are not 100%. I still show symptoms of fat not being digested. I am controlled to the point where I can leave my house and my bathroom without not eating for 24 hours. There was talk of another endoscopy with an ultrasound probe and biopsy. The surgeon advised no other tests were needed and that to move on with Whipple surgery as soon as possible. Guess I am a bit farther along in this than you were. And it seems the surgeon thinks I am close to the cancer spreading and doesn't want the tumor poked and prodded any more for fear it would trigger it to spread.

I think this is a long shot that the cancer has not spread. But it is the only chance I have.

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