Question about surgery plan: Did you stop chemo months before surgery?

Posted by thawk32 @thawk32, Nov 30, 2023

Tuesday I had a consultation with the surgery team and their plan is to stop my chemo and do radiation Monday-Friday for five weeks and take the chemo pill. They said they see the best results when this medical plan is followed before surgery.
Then they want to stop chemo for 3 months to see if I have any spread of the cancer. If no spread they will schedule my surgery. I picked a doctor that has done the most pancreatic surgeries in New England and is highly rated.
Has anybody had this kind of plan before surgery?

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

I have not. What stage were you and was it John Hopkins? Please continue posting and sharing your results and best of luck in your journey.

REPLY

@thawk32, could you share more info?

--- Where is the tumor?
--- What type of tumor is it?
--- Has this plan been created bc there is arterial involvement, meaning that the surgeon wants to try to shrink the tumor before attempting surgery? (It sounds as though the surgeon thinks, for some reason, that the tumor is not resectable at this time, but ****I'm not a scientist or doctor, so please don't take my assumption as a reliable one.****)

Bottom line: Each case is unique, and the likelihood of someone on this board having had the same experience is slim. I think you need more info from your surgeon and your onc. Please know that I'm not discouraging you from seeking info here; I'm just urging you to get the info you need from the people who know the most: your care team. Good luck.

PS: Again, note that I'm not particularly knowledgeable, but "Let's wait three months and see whether it has spread" alarms me. A lot of cancerous growth can occur within three months.

Is your surgeon saying that you need a mandatory rest period of three months after radiation+oral chemo to ensure that you're strong enough to endure surgery?

Or, is there some other reason for that gap? Why wouldn't your surgeon be able to determine, with bloodwork and imaging very shortly after completion of radiation + oral chemo, whether you're a candidate for surgery? I'm not trying to alarm you -- I'm asking questions that I think your team needs to answer. YOU need to be 100% clear about why they're doing what they're doing -- that's your right as a patient.

REPLY
@jk77

@thawk32, could you share more info?

--- Where is the tumor?
--- What type of tumor is it?
--- Has this plan been created bc there is arterial involvement, meaning that the surgeon wants to try to shrink the tumor before attempting surgery? (It sounds as though the surgeon thinks, for some reason, that the tumor is not resectable at this time, but ****I'm not a scientist or doctor, so please don't take my assumption as a reliable one.****)

Bottom line: Each case is unique, and the likelihood of someone on this board having had the same experience is slim. I think you need more info from your surgeon and your onc. Please know that I'm not discouraging you from seeking info here; I'm just urging you to get the info you need from the people who know the most: your care team. Good luck.

PS: Again, note that I'm not particularly knowledgeable, but "Let's wait three months and see whether it has spread" alarms me. A lot of cancerous growth can occur within three months.

Is your surgeon saying that you need a mandatory rest period of three months after radiation+oral chemo to ensure that you're strong enough to endure surgery?

Or, is there some other reason for that gap? Why wouldn't your surgeon be able to determine, with bloodwork and imaging very shortly after completion of radiation + oral chemo, whether you're a candidate for surgery? I'm not trying to alarm you -- I'm asking questions that I think your team needs to answer. YOU need to be 100% clear about why they're doing what they're doing -- that's your right as a patient.

Jump to this post

The tumor is in the body of the pancreas. I will be doing five weeks of radiation to the tumor to get as much of the cancer out before the surgery. I will be stopping the chemo and taking the chemo pill.
My surgeon told me he has great success with this plan.

REPLY
@thawk32

The tumor is in the body of the pancreas. I will be doing five weeks of radiation to the tumor to get as much of the cancer out before the surgery. I will be stopping the chemo and taking the chemo pill.
My surgeon told me he has great success with this plan.

Jump to this post

I accept that your surgeon is experienced and highly rated, but what concerns me is that you're on this board, asking whether anyone else has undergone the same protocol.

To me, ***that implies that you don't have all the info that you need.**** I'm just reiterating my suggestion that you talk to your surgeon, after writing down a list of questions. Among them: What, specifically, about *your* tumor and, if relevant, your other heath considerations, makes this the best choice for *you*?

(For ex., my onc. gave me 8 cycles of FOLFIRINOX before surgery rather than the standard 12; I didn't ask why but now I will, because I think it might have had an unintended and negative consequence -- and I wish I had asked at the time.) So pls know that I'm not trying to hassle you -- rather, I'm eager for all of us to get the info we need so we can have the best-possible outcome.

REPLY

I, too, might be alarmed with a recommendation for a three month gap between CRT or CHT and what it sounds like is Whipple surgery.

I don't think it is unusual for a shorter gap ... are you certain it was three months and not three weeks?

Is your medical care at a pancreatic center of excellence? If not, please consider quickly being evaluated at one of these ... pancan.org can provide assistance in identifying one. My recommendation is to relocate to one of these centers for all of your treatment - including chemo and surgery.

REPLY
@mnewland99

I have not. What stage were you and was it John Hopkins? Please continue posting and sharing your results and best of luck in your journey.

Jump to this post

I was stage 4 when diagnosed in April 2021 with tumor on my Pancreas and a couple small spots on my liver. Once then chemo has gotten the liver lesions and the Pancreas tumor has been reduced.

REPLY
@jk77

I accept that your surgeon is experienced and highly rated, but what concerns me is that you're on this board, asking whether anyone else has undergone the same protocol.

To me, ***that implies that you don't have all the info that you need.**** I'm just reiterating my suggestion that you talk to your surgeon, after writing down a list of questions. Among them: What, specifically, about *your* tumor and, if relevant, your other heath considerations, makes this the best choice for *you*?

(For ex., my onc. gave me 8 cycles of FOLFIRINOX before surgery rather than the standard 12; I didn't ask why but now I will, because I think it might have had an unintended and negative consequence -- and I wish I had asked at the time.) So pls know that I'm not trying to hassle you -- rather, I'm eager for all of us to get the info we need so we can have the best-possible outcome.

Jump to this post

I went out of my medical network to see this Surgeon as he is the Top pancreas cancer surgeon in New England. The reason behind the radiation is to shrink as much as possible before surgery as imaging doesn’t always show everything. I also like to add that I have a rare form of Pancreas cancer call Acinar which is lees aggressive that the other Pancreas cancers.
I’m go to Mass General Hospital in Boston Massachusetts.

REPLY
@mayoconnectuser1

I, too, might be alarmed with a recommendation for a three month gap between CRT or CHT and what it sounds like is Whipple surgery.

I don't think it is unusual for a shorter gap ... are you certain it was three months and not three weeks?

Is your medical care at a pancreatic center of excellence? If not, please consider quickly being evaluated at one of these ... pancan.org can provide assistance in identifying one. My recommendation is to relocate to one of these centers for all of your treatment - including chemo and surgery.

Jump to this post

I won’t be totally off the chemo for three months. I will be taking a Chemo pill durning the five weeks of Radiation.
The doctor I’m seeing is the top Pancreas cancer surgeon who does the most surgeries in New England and is at Mass General Hospital.
I also would like to add I have a rare form of Pancreas Cancer called Acinar which is less aggressive that the other type of pancreas cancers.

https://www.massgeneral.org/doctors/16840/carlos-fernandez-del-castillo
REPLY

thawk,

I can't comment re Mass General ... are they considered a pancreatic cancer center of excellence? If you are not certain they are, please consider confirming with pancan.org ... here is a link to request a list of these centers.

https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/

Here is a link to Mass General Brigham which says they are ... I don't know the specific differences between these two ...

https://www.massgeneralbrigham.org/en/patient-care/international/treatments-and-specialties/cancer-care/pancreatic-cancer#:~:text=Mass%20General%20Brigham%20has%20been,quality%20of%20life%20for%20patients.
REPLY
@mayoconnectuser1

thawk,

I can't comment re Mass General ... are they considered a pancreatic cancer center of excellence? If you are not certain they are, please consider confirming with pancan.org ... here is a link to request a list of these centers.

https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/

Here is a link to Mass General Brigham which says they are ... I don't know the specific differences between these two ...

https://www.massgeneralbrigham.org/en/patient-care/international/treatments-and-specialties/cancer-care/pancreatic-cancer#:~:text=Mass%20General%20Brigham%20has%20been,quality%20of%20life%20for%20patients.

Jump to this post

They are the same Hospital just in different parts of the city of Boston. My doctor is the Top Surgeon in New England for Pancreatic cancer surgery.

REPLY
Please sign in or register to post a reply.