Newly diagnosed pancreatic cancer

Posted by tsacco @tsacco, Jul 11 7:26am

My mom is 81 and relatively healthy, thyroid disease and hypertension, and was just diagnosed with pancreatic cancer in the head of the pancreas. Her CA19-9 was 135 a week ago. She has a biliary stent because the mass was pushing on her bile duct causing her to become jaundiced. I’m not sure what my question is…I’m just so scared. We have an appt next week with a surgeon but I’m not sure she will tolerate surgery or chemo or both. She’s lost a lot of weight the past month. Her MRI did not show enlarged lymph nodes. Is a CA19-9 of 135 real high?

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

Teresa, Volunteer Mentor | @hopeful33250 | Sep 20 8:31am

In reply to @tsacco "She has adenocarcinoma. Scheduled for a whipple on 7/29." + (show)

Hello @tsacco

In your last post, you said that your mother was scheduled for a Whipple procedure at the end of July. Did she have that surgery? How is she doing?

reme51 | @reme51 | Sep 20 11:42am

In reply to @carlalee "I am new to this disease having been diagnosed Aug 20. I suggest you ask for..." + (show)

What does it mean to "voluntarily enter hospice care"? Did you reject chemo and surgery?
I am 74 and just diagnosed with Stage 1 (maybe 2) adenocarcinoma in the tail of the pancreas.
I am (was) relatively healthy but I don't think I can tolerate chemo, especially Folfirinox. I would have a distal pancreatectomy if they will do it without chemo 1st. In Hospice are they just helping to manage the disease? How are you doing?
Thank you...

tootsie100 | @tootsie100 | Sep 20 1:02pm

In reply to @keepingoptimistic "Do you have a family member or close friend for support?" + (show)

Yes, my husband is my support.

carlalee | @carlalee | Sep 20 1:41pm

In reply to @reme51 "What does it mean to "voluntarily enter hospice care"? Did you reject chemo and surgery? I..." + (show)

Going into Hospice, which one can only do with a terminal diagnosis, means
all treatment or attempts to slow down disease are stopped. Only comfort
such a pain free management is provided as patient slowly dies. I am in
Stage 2 or 3, drs think. At my age, 76, widowed, with no one needing me for
support, I have no compelling reason to fight. Yes, my Friends and
relatives are sad but are accepting. I have had a good life. Nothing more I
need or want to do. Just enjoy each day as best I can. I am happy and
content. Not sad. But, this is me. Not for everyone. I cannot recommend for
others. Each person has their own path to cover. Hospice stays with me to
the end. Google them and learn.

keepingoptimistic | @keepingoptimistic | Sep 20 4:30pm

Caregiver support is it's own education. I have gone to several caregiver support groups in my area at senior centers and they may be very helpful for your husband as you learn more about your situation and treatment. Keep me posted and don't assume the worst.

stageivsurvivor | @stageivsurvivor | Sep 21 10:54am

In reply to @tootsie100 "I was diagnosed through an MRI infused. They sent me for an endoscopy with a biopsy...." + (show)

Two pancreatic cancer support groups you may be interested in for obtaining information on navigating care, treatment and clinical trials for future consideration are craigscause.ca which conducts support group meetings every Monday from 7:00pm ET/4:00pm PT.

Support group meetings for the recently diagnosed is also held a few times a month by the Seena Magowitz Foundation. Information on the schedule and registering is at the https://seenamagowitzfoundation.org/pancreatic-cancer-support-group/

tootsie100 | @tootsie100 | Sep 21 11:31am

Thank you for the links.

stageivsurvivor | @stageivsurvivor | Sep 21 12:27pm

In reply to @tootsie100 "Thank you for the links." + (show)

Here is the contact info for Craig’s’ Cause
For general inquires email info@craigscause.ca or call 1.877.212.9582

For getting a second opinion, you don’t tell the current medical center you want to go for a second opinion nor ask them who you should see. That introduces bias into the process. You want to find a comprehensive cancer center with a high volume pancreas program specializing in treating cancers of the pancreas. There are a number of participants on the support group meeting every Monday evening that will share where they went for treatment and the steps they took to get a second opinion.

tootsie100 | @tootsie100 | Sep 21 1:45pm

Thank you for your help.

souhams | @souhams | Sep 21 6:24pm

In reply to @tootsie100 "At the present it is not operable due to it being wrapped around an artery and..." + (show)

Go see Dr Evans in Milwaukee Wisconsin at Froedtert Hospital He does all the complicated surgeries. He is the best. Send your recent scan and he will look at it and his team will call you back.