Pancreatic Cancer Group: Introduce yourself and connect with others

markymarkfl… comment from your post.
“I can't emphasize how important it is to be proactive and assertive, and if you don't find your care team responsive to requests like that, consider offering to self-pay for them (to get the results in a timely manner) while you look for a more responsive care team.”

How difficult would it be to do this …. at the same care center or elsewhere?

Mayo Clinic, Rochester.

katiegrace,

Which center of excellence?

@katiegrace
I will put you on my prayer list for February 15 and several days afterward.
Pray for strength and patience in your recovery. You can do this! Allow the nurses to help you and plan to follow the dietary guidelines afterward. Don’t be scared. You are taking positive steps towards being a thriver. 💜💜

Prayers to you !!

Wish you luck with the Whipple surgery - it is currently the best way to go if you can get it done.

Will you be in the hospital for the entire time your primary surgeon is away? My only suggestion I can give you - find out who will be the primary contact and secondary backup and try to at least meet them beforehand. Just make sure that your family team knows who to get in touch with if needed.

I was diagnosed on June 7, 2023 as stage 2b. I have had 12 chemo treatments. I receive care at a clinic of excellence, which does over 250 Whipples a year.
At my last scan this last week, the PET scan didn't light up anything in the tumor area (head), but the tumor is still there and had shrunk 3 mm. (no spread was seen by the scan). I am scheduled to have the Whipple procedure on Feb 15th. Surgeon said surgery will take 5 1/2-6 hours. My last chemo was Jan 18th. I am trying to get stronger before surgery, trying to walk more. I still feel fatigued and weak at times. My surgeon has to leave the day after my surgery to go out of the country to speak for her work, and she will be gone a week. She is assured she can take care of any of my problems after surgery, over the phone. At this place of excellence, there are 5 other surgeons who do this same surgery, so I am trusting I will still be in good hands even though she will not be there for a week after my surgery.

If you believe in prayer, please pray that my surgery will be successful, that I won't have any long -lasting complications after surgery, and that I will be able to recover quickly and well. Thank you.

I am scared to death of this surgery, and I'm scared to death to not have this surgery. Thank you.
p.s. The scan picked up something in the back of my right hip; the doctor asked if I had fallen or had a bruise- I have no clue what the scan is picking up. I have not fallen and don't have a bruise or pain in that area. The doctor didn't seem concerned; the scan suggested an MRI.
Any advice about anything I have mentioned above is appreciated. Thank you.

Note to myself:
"Worry does not empty tomorrow of its sorrow; it empties today of its strength. "
Holocaust survivor Corrie ten Boom

@waltsocal , I was kind of surprised the Signatera (or equivalent) test was not automatic.

They take tumor tissue (from a biopsy, Whipple, or whatever) and send it to the Natera company for analysis. Natera builds a special blood test called "Signatera" that looks specifically for DNA matching your tumor. (They call this ctDNA -- circulating tumor DNA -- because it's from the tumor, and circulating in your blood stream).

Similar to CA19-9, it's a fairly useful measure of tumor growth/activity in your body, but it's much more specific. It's said to also be relatively sensitive, but it wasn't sensitive enough to pick up my recurrence until too late. But I've been sending them new blood samples every 2-3 months, and it has confirmed that the GAC chemo has been keeping cancer below levels they can detect. (That doesn't make me NED because the MRI and elevated CA19-9 are reasonable evidence of disease, but they do support my current diagnosis of "stable disease" under good control).

Anyway, I had to ask my care team to submit a tissue sample from my Whipple procedure, several weeks after the surgery. They did have enough leftover tissue build the test from, and it's been a very useful supplement to gauge the effectiveness of my treatment.

I was also kind of surprised they didn't send tumor tissue off for NGS (Next-Generation Sequencing, a fancy DNA analysis) immediately after the Whipple (which was 20 months ago). I asked the team about it 2 weeks ago, and they are now ordering the xT and xR tests from Tempus.

They might have thought after surgery since my margins were all clean that they didn't need to do all this analysis, and would not be cost effective to do so as the reason for skipping it. Now that I've had a recurrence and am looking into clinical trial options, this is crucial information to have.

I can't emphasize how important it is to be proactive and assertive, and if you don't find your care team responsive to requests like that, consider offering to self-pay for them (to get the results in a timely manner) while you look for a more responsive care team.

Edit/Update:

1) The Guardant FX 360 blood test is sort of a "liquid biopsy" that can identify tumor DNA in your bloodstream without a tissue sample. It also detects certain mutations that may be targetable, MicroSatellite Instability and Tumor Mutational Burden properties) and returns a list of clinical trials that might be relevant.

2) Most patients get an EUS and FNA biopsy long before they get a Whipple, but I never hear of these biopsies being sent off for NGS or Signatera. I would ask the surgeon before long before the EUS if they can get enough tissue to order these (if the intraoperative pathology detects malignancy) so you have it in process while you're waiting for the follow-on oncology consult. Having this info early could completely steer them to a different treatment than the statistical median SoC treatment you're likely to get without it.

I was on G+A from 22 July 2022 until 28 December 2023. My last 2 CT scans showed "radiological remission" so I am now taking a break with labs every month and CT scan & oncology visit every three months. I have stage 4 and it started in the tail of my pancreas & metastasized to my lungs.

Thanks a lot for that feedback.

I’m really thinking I need to push the Oncologist to think about every 2 weeks so that I can tolerate the G+A for a long period of time.