Mass found on my mother's pancreas

Posted by aconcernedson @aconcernedson, Jun 25 12:43pm

My mom is 81 years old and for about three months has been having bad lower back pain. She's been to her family doctor, orthopedic specialists, etc., and other than a pretty mangled back from scoliosis and years of abusing her back in her backyard they've found no answers. In late March I took her to the ER with swelling in her legs. She's been on a pretty heavy dose of Lasix since that time though no cause has been attributed to the swelling yet. Last Tuesday I took her to the ER because she complained of being too weak to stand up and felt feverish. She was diagnosed with a severe urinary tract infection with sepsis and has been in the hospital since that time. Her cardiologist has indicated that her heart is OK. The kidney doctor has had the same findings. We kept pushing the doctors to look further into her other issues such as her back pain, leg swelling, nausea, etc. An ultrasound taken recently revealed a mass on her pancreas. The description is as follows:
"A well-circumscribed solid, hypoechoic mass is seen in the pancreatic head measuring 2.0 x 1.1 x 2.0 cm. There is dilatation of the main pancreatic duct, which measures 5 mm in diameter."

The summary impression reads as follows:

"SOLID, HYPOECHOIC MASS IN THE PANCREATIC HEAD WITH DILATATION OF THE MAIN PANCREATIC AND COMMON BILE DUCTS CONCERNING FOR NEOPLASM"

I'm glad they kept looking and finally may have found what's been causing her so much trouble, but I'm also already feeling overwhelmed despite not even having a determinative diagnosis yet. A biopsy is pending, and there may be additional imaging performed also.

Are there steps I can take to prepare for a cancer diagnosis? What do the descriptions of the mass above indicate generally? Is it worth what she will be in store for to seek treatment given her age? If so, where do I start? I'm her only child, and my dad is deceased. So it's just her and me. I went through all of this with him about 11 years ago when he was diagnosed with stage 4 Hodgkin's lymphoma, so this is a bit of deja vu that I could do without. We took him to M.D. Anderson, and they gave us nearly three additional years with him that the local oncology team advised was not in the cards.

Any guidance, information, support, etc. would be greatly appreciated. I'm trying to be strong for her and for me, but it's hard.

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

mcharlesfrancis | @mcharlesfrancis | Jun 26 7:35am

Make sure you take her to a pancreas cancer specialist and after that get a second opinion.

ltg7622 | @ltg7622 | Jun 26 11:26am

They are likely to order an endoscopic ultrasound with fine needle aspiration EUS FNA. It will give more specific information. You’ll want to have an EXPERIENCED gastroenterologist perform it. I am 73 and have chosen not to proceed with treatment for now. I have a main duct IPMN dispersed throughout with 15mm dilation Treatment for me involves a Total Pancreatectomy. It’s a hard decision Good luck with your mom and get as much testing as they recommend

burlslinda | @burlslinda | Jun 27 1:32pm

We began this journey in April for my husband, prayers to you and your mom for healing. We are in VA and are self-employed so our marketplace insurance only allows within the state. So many people have said you need MD Anderson for pancreatic cancer, so if you have that option I'd get her there ASAP.

eei | @eei | Jun 27 2:13pm

Sorry about your mother having to endure getting a diagnosis. I don’t know where you live —
Please find a doctor who specializes in pancreatic cancer. Prayers

stageivsurvivor | @stageivsurvivor | Jun 28 6:31am

Pancreatic cancer is a challenging cancer but has various treatment options. This is not a cancer to be treated at a community hospital or regional medical center. It requires being treated at a high volume center with a pancreas program at either an NCI designated Center of Excellence or a National Pancreas Foundation recommended Comprehensive Cancer Center if one’s objective is a better outcome. Clinical trials should be considered earlier in one’s treatment plan rather then later as deterioration in health will lead to ineligibility.

Some helpful links for the patient and caregiver:
NEWLY DIAGNOSED
https://pancan.org/facing-pancreatic-cancer/diagnosis/recently-diagnosed/
.
https://letswinpc.org/newly-diagnosed/
.
https://media.pancan.org/patient-services/educational-materials/PanCAN-Booklet-Overview.pdf
.
https://pancan.org/facing-pancreatic-cancer/patient-services/packet-order/
.
For information on support groups specific to the patient and to the caregiver, SeenaMagowitzFoundation.org

CENTERS OF EXCELLENCE
https://www.cancer.gov/research/infrastructure/cancer-centers/find
.
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
.
PHYSICIAN FINDER PANCREATIC CANCER SPECIALISTS
https://letswinpc.org/finding-pancreatic-cancer-specialist/

mayoconnectuser1 | @mayoconnectuser1 | Jun 28 8:29am

Agree with everyone - immediately get her to a pancreatic cancer center of excellence. Do not delay. Call one (Anderson, Mayo, etc) as soon as possible and start the process. Do not delay based on local advice.

aconcernedson | @aconcernedson | 5 days ago

Thanks to everyone for taking the time to respond. Late last week she underwent a bone marrow biopsy, but the results were inconclusive because the pathologist wasn't able to determine with certainty what type(s) of cells were present. The specimen was sent to the University of Michigan for further analysis. This morning she underwent an endoscopic procedure that allowed the doctor to view the pancreas and to get tissue for a biopsy. The doctor advised that he saw three places on her pancreas that he strongly believes are cancerous. The CT scan last week showed spots on a kidney, a lung, adrenal gland, back, and perhaps other locations I can't remember right now. The local oncologist advised that the chemotherapy options can't be known until the cancer cells are identified. She also mentioned and recommended palliative chemotherapy. Although it's my mother's decision, I want to be able to provide her with all available options and information. I'm feeling pretty overwhelmed at this point. I think I've actually slept three of the last 16 or so nights. I don't know if she's even well enough to travel to a place like M.D. Anderson. My dad was, so it was a no-brainer. I just feel like every day she's not receiving something to actually treat the disease is a day wasted.

Rubyslippers | @triciaot | 5 days ago

@aconcernedson You have carried quite a heavy load with your dad’s cancer and now your mom. I wish for you that you can find some moments of peace amidst the chaos that comes with early diagnosis scans and decisions.

You might want to request a second opinion from MD Anderson, easier than going there. Many doctors like conferring with their colleagues at other facilities on cases, and your permission allows them to do so. The local oncologist might agree with MDAs assessment and follow their recommendations even if different from originally planned.

MDA makes uploading documents and scans pretty easy, or you might be able to use Share Everywhere and give one time access to her medical chart to MDA. Her local facility would need to use/set-up the Share Everywhere - MDA already uses it.
Link to MDA second opinion info:
https://www.mdanderson.org/patients-family/search-results.v2.html?q=Second%20Opinion%20Appointments#_
My family are notorious creators of timelines. One thing it does help with is being able to see if/when progress can/will be made. Sometimes there just isn’t any other action you can take today. I don’t mean anything fancy, just a list of knowns for expected results, add in when treatment might be started. . . and you see those blank days of waiting? That’s when you sleep. Take care of yourself, you need it for you, and your mom needs you to be healthy, too!