1. < Pancreatic Cancer

Indeterminant cystic lesion in the pancreas....where to go from here

Posted by di341 @di341, Nov 16, 2023

Hello,

My very close friend recently had a Prenuvo scan, which is a comprehensive whole body scan. There was one "important finding" on the lengthy report:

"There is a lesion located in the uncinate process of your pancreas. The lesion measured 1.3cm in diameter. This finding by imaging is indeterminant. An indeterminant cystic lesion of the pancreas can potentially be a benign or a malignant lesion."

He recently mentioned that he has started having some pain in that area (he just got the report today).

In the interest of time being of the essence, should it be a malignancy, what is the advice here on next steps? This board is full of such wonderful people who know the ropes and have been invaluable to me previously on a different cancer. Please share your hard earned wisdom once more.

We reside in the Bay Area and have access to Stanford and UCSF. Trying not to put the cart before the horse but want to work ahead to have a plan of action, if need be.

Thank you, thank you, thank you, for helping us know what to do next,
Di

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

markymarkfl | @markymarkfl | Nov 16, 2023

Move fast!

Get the Invitae germline DNA test done asap by anyone who will order it to see if family mutations increase the risk of pancreas (or any other) cancer. Knowledge of this may speed up access to treatment as well as help inform an optimal treatment.

Get a CA19-9 blood test every 2 weeks until more conclusive data (from imaging or biopsy) is in.

Try to get a pancreas-specific MRI (MRCP) done asap at a pancreatic cancer center of excellence.

Keep a very close eye out for jaundice; yellowing of skin, whites of eyes, more itching than usual, darker than normal urine, lighter stool color, more frequent diarrhea, increases in blood sugar level.

If you can get a Guardant 360 blood test, that can also detect somatic (non-inherited) mutations if you have cancer cells present.

The Galleri test from Grail is another liquid biopsy (DNA-based blood test) you can "self-order" if you call Grail, speak to one of their counselors, and pay them $1000. It's not super-sensitive to pancreas cancer and it's not FDA appropved, but if it does return a positive, it gives you a lot of ammo for moving to the front of the line for treatment.

It can be challenging to get your appointments scheduled at a center of excellence. Some won't even see you until you've been diagnosed w/ cancer by someone else. If you can get a good gastroenterologist on board, you might be able to get priority referrals to good centers.

Wishing you the best!

--mm

REPLY
2 replies
di341 | @di341 | Nov 16, 2023

Thank you, Angel among us! That is very helpful information. I am terrified that he will hear that they will "watch it".

I am familiar with the Invitae test and Galleri, both. I have Lynch Syndrome. Makes sense in this scenario. We will pursue this for sure.

Big hug for your time and attention to our news!! I'll keep updating our journey.

REPLY
gamaryanne | @gamaryanne | Nov 17, 2023

Whether or not it is is PCAN, and we hope it isn’t, immediately get connected with a liver and pancreas specialist. They treat pancreatitis and other maladies associated with the pancreas and you WANT to be on their radar ! If nothing else, they will provide the info insurance needs to keep the person in close surveillance with appropriate scans and testing. Unfortunately, Many GI doctors just do not have the pancreas top of mind and exhaust every other reason for symptoms while disease may be spreading.

Best of luck and keep us updated!

REPLY
1 reply
collenp | @collenp | Nov 17, 2023
In reply to @markymarkfl "Move fast! Get the Invitae germline DNA test done asap by anyone who will order it..." + (show)
@markymarkfl

Move fast!

Get the Invitae germline DNA test done asap by anyone who will order it to see if family mutations increase the risk of pancreas (or any other) cancer. Knowledge of this may speed up access to treatment as well as help inform an optimal treatment.

Get a CA19-9 blood test every 2 weeks until more conclusive data (from imaging or biopsy) is in.

Try to get a pancreas-specific MRI (MRCP) done asap at a pancreatic cancer center of excellence.

Keep a very close eye out for jaundice; yellowing of skin, whites of eyes, more itching than usual, darker than normal urine, lighter stool color, more frequent diarrhea, increases in blood sugar level.

If you can get a Guardant 360 blood test, that can also detect somatic (non-inherited) mutations if you have cancer cells present.

The Galleri test from Grail is another liquid biopsy (DNA-based blood test) you can "self-order" if you call Grail, speak to one of their counselors, and pay them $1000. It's not super-sensitive to pancreas cancer and it's not FDA appropved, but if it does return a positive, it gives you a lot of ammo for moving to the front of the line for treatment.

It can be challenging to get your appointments scheduled at a center of excellence. Some won't even see you until you've been diagnosed w/ cancer by someone else. If you can get a good gastroenterologist on board, you might be able to get priority referrals to good centers.

Wishing you the best!

--mm

Jump to this post

Hi markymark,
What Wonderful advice.
I thought I was informed.
You are absolutely right.
When you have all these tests conducted, it absolutely helps in "YOUR ARSENAL" because you have helped the physicians in doing their job and they will see that they are dealing with an educated patient advocate. Doctors treat you with more respect when they are held at a higher bar. Thank you so much. I took notes and will keep this information in my medical binder.
Take care,
Keep advocating for all of us.
colleenp

REPLY
mayoconnectuser1 | @mayoconnectuser1 | Nov 18, 2023

di341,

As MM noted - speed is of the essence. Do not wait for anything or anyone to call you back, Insist on absolute soonest testing to determine if the cyst is malignant - that will allow access to a center of PANCREATIC CANCER excellence, NOT just a large medical center that does all cancers.

CALL and speak with the pancan.org folks at 877-272-6226 ASAP.

If malignant, and your friend is accepted by a center of excellence, they should relocate to that center's local area in order to be treated - assessment, chemo, surgery, etc there - every day counts. I am not a medical professional, but my advice is to not let any excuse or need to remain at home obscure the need to have the best care.

REPLY
1 reply
di341 | @di341 | Nov 18, 2023
In reply to @mayoconnectuser1 "di341, As MM noted - speed is of the essence. Do not wait for anything or..." + (show)
@mayoconnectuser1

di341,

As MM noted - speed is of the essence. Do not wait for anything or anyone to call you back, Insist on absolute soonest testing to determine if the cyst is malignant - that will allow access to a center of PANCREATIC CANCER excellence, NOT just a large medical center that does all cancers.

CALL and speak with the pancan.org folks at 877-272-6226 ASAP.

If malignant, and your friend is accepted by a center of excellence, they should relocate to that center's local area in order to be treated - assessment, chemo, surgery, etc there - every day counts. I am not a medical professional, but my advice is to not let any excuse or need to remain at home obscure the need to have the best care.

Jump to this post

Thank you very much for your sage advice. We do have access to Stanford which I believe is on the list of centers of excellence for PCAN.

REPLY
di341 | @di341 | Nov 18, 2023
In reply to @gamaryanne "Whether or not it is is PCAN, and we hope it isn’t, immediately get connected with..." + (show)
@gamaryanne

Whether or not it is is PCAN, and we hope it isn’t, immediately get connected with a liver and pancreas specialist. They treat pancreatitis and other maladies associated with the pancreas and you WANT to be on their radar ! If nothing else, they will provide the info insurance needs to keep the person in close surveillance with appropriate scans and testing. Unfortunately, Many GI doctors just do not have the pancreas top of mind and exhaust every other reason for symptoms while disease may be spreading.

Best of luck and keep us updated!

Jump to this post

I really appreciate your response. Good advice!! We will certainly pursue this with a pancreas specialist.

REPLY
gjbrx66 | @gjbrx66 | Nov 19, 2023
In reply to @markymarkfl "Move fast! Get the Invitae germline DNA test done asap by anyone who will order it..." + (show)
@markymarkfl

Move fast!

Get the Invitae germline DNA test done asap by anyone who will order it to see if family mutations increase the risk of pancreas (or any other) cancer. Knowledge of this may speed up access to treatment as well as help inform an optimal treatment.

Get a CA19-9 blood test every 2 weeks until more conclusive data (from imaging or biopsy) is in.

Try to get a pancreas-specific MRI (MRCP) done asap at a pancreatic cancer center of excellence.

Keep a very close eye out for jaundice; yellowing of skin, whites of eyes, more itching than usual, darker than normal urine, lighter stool color, more frequent diarrhea, increases in blood sugar level.

If you can get a Guardant 360 blood test, that can also detect somatic (non-inherited) mutations if you have cancer cells present.

The Galleri test from Grail is another liquid biopsy (DNA-based blood test) you can "self-order" if you call Grail, speak to one of their counselors, and pay them $1000. It's not super-sensitive to pancreas cancer and it's not FDA appropved, but if it does return a positive, it gives you a lot of ammo for moving to the front of the line for treatment.

It can be challenging to get your appointments scheduled at a center of excellence. Some won't even see you until you've been diagnosed w/ cancer by someone else. If you can get a good gastroenterologist on board, you might be able to get priority referrals to good centers.

Wishing you the best!

--mm

Jump to this post

I didn’t see a germline panel for the Invitae- which test is for the pancreas?

REPLY
1 reply
markymarkfl | @markymarkfl | Nov 20, 2023
In reply to @gjbrx66 "I didn’t see a germline panel for the Invitae- which test is for the pancreas?" + (show)
@gjbrx66

I didn’t see a germline panel for the Invitae- which test is for the pancreas?

Jump to this post

There's not a "germline" test specific to pancreatic cancer, as far as I know.

The germline tests just look at multiple genes you inherited from your parents, and report which mutations you have (if any).

The Invitae 70-gene Multi-Cancer panel tests for mutations in 70 of the genes most commonly associated with cancer in general, including mutations common to pancreatic cancer (BRCA1, BRCA2, PALB2, ATM and others I'm not as familiar with).

There are other tests and providers as well, but this is the one I had two years ago:
https://www.invitae.com/en/providers/test-catalog/oncology

REPLY
1 reply
gjbrx66 | @gjbrx66 | Nov 21, 2023
In reply to @markymarkfl "There's not a "germline" test specific to pancreatic cancer, as far as I know. The germline..." + (show)
@markymarkfl

There's not a "germline" test specific to pancreatic cancer, as far as I know.

The germline tests just look at multiple genes you inherited from your parents, and report which mutations you have (if any).

The Invitae 70-gene Multi-Cancer panel tests for mutations in 70 of the genes most commonly associated with cancer in general, including mutations common to pancreatic cancer (BRCA1, BRCA2, PALB2, ATM and others I'm not as familiar with).

There are other tests and providers as well, but this is the one I had two years ago:
https://www.invitae.com/en/providers/test-catalog/oncology

Jump to this post

Thank you for your help!

REPLY
Please sign in or register to post a reply.