Newly Diagnosed Relative

Posted by gilley @gilley, 22 hours ago

Hi Everyone. My sister in law was diagnosed with pancreatic cancer 12/1 at an ER. Her CT showed spots in her lung, liver and kidney. The tumor was 5 cm (in the tail of the pancreas) and growing around the adrenal gland, kidney and 2 arteries going to the kidney. The hospital did a biopsy and scheduled her with an oncologist 12/10. He spent 15 minutes with her and then scheduled a PET scan for 12/18. He scheduled a follow up with him on 1/22 though he will call her with PET result.

Her tumor marker more than tripled from 12/1-12/10. She has significant abdominal and back pain. I am very upset with the oncologist’s lack of care. I need to know if I’m correct in feeling like more should be planned and scheduled by now. I’m trying to find someone to treat her faster but getting nowhere. My head is spinning. Thank you so much for any thoughts you can offer.

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marienewland | @mnewland99 | 21 hours ago

@gilley
Welcome to the forum and sorry to hear about diagnosis of your sister- in-law. Depending which pancreatic center of excellence you are going to it can take time initially to get started. I live in Southern California and was a stage 2 at diagnosis where tumor was approximately 2.7 cm with 1 lymph node affected. I was able to receive surgery. I took the lead and scheduled my CT, PET, and ERCP biopsy) within 2 weeks of my ultrasound which showed the tumor. I was assigned a surgeon and had my surgery a week after my testing was completed. Atypical from most cancer patients, I wasn’t assigned an oncologist until after I got out of the hospital after my surgery and complications which was at least 1 month after my surgery. I didn’t know enough at the time to even ask for an oncologist from day 1. Please state city and state where relative is getting treatment and others on this site can recommend additional places where care could be considered. Chemo might be the next step. Best wishes on this journey and so kind of you to be concerned about your sister in law.

gilley | @gilley | 20 hours ago

In reply to @mnewland99 "@gilley Welcome to the forum and sorry to hear about diagnosis of your sister- in-law. Depending..." + (show)

She lives in Vero Beach, FL.

Thank you so much for your detailed reply. I appreciate it.

sheridanb | @sheridanb | 19 hours ago

We didn't know enough to get things faster when my husband was first having problems. They spent months and months just coming up with a diagnosis... and it turned out to be wrong.
Dan's doctor prescribed PT for his back pain... and when that didn't help, and we couldn't get a close appointment with the doctor, his PT actually told him to go to urgent care. Said it was urgent because Dan couldn't sleep because of the pain. And the urgent care doctor was the first to order a scan that showed "something" on the pancreas, lungs, bones (back) and that at least got us in to see an oncologist. It was a frustrating time of waiting so I can understand what you are going through.
There were months and months of scans, doctor visits, etc... and they decided it was all "consistent" with lung cancer. That is a word to watch out for as they did not do the necessary biopsies or CA19-9 tumor markers to determine that it was in fact pancreatic cancer until more than 6 months later.
When you've had no health issues in 70 years, you don't know the right questions to ask and depend too much on the doctors and their schedules. All I can say is keep pushing to try to speed things along. Our hospital has a "navigator" for people with cancer and she has been a great help in trying to take care of things when we get put on hold. Not sure if your hospital has navigators, but if they do... definitely worth getting one to help.
Good luck to you and your sister in law.

gilley | @gilley | 19 hours ago

Thank you so much for your sharing your experience and ideas. It helps to hear that trying to push for care is the right thing to do.

marienewland | @mnewland99 | 16 hours ago

In reply to @gilley "She lives in Vero Beach, FL. Thank you so much for your detailed reply. I appreciate..." + (show)

There’s a Mayo Clinic in Florida, but if you want things to happen quickly with rising CA19-9, then ask if there is an advocate in the Oncology group that can help you. They already know you have cancer from the biopsy so ask if chemo can be scheduled.

sb4ca | @sb4ca | 10 hours ago

I would suggest that you only go to a pancreatic center of excellence. At least for a second opinion. Here's a link to the PC Foundation where you can find more information and support. I'm very sorry that you're all in this bewildering situation. https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

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