1. < Pancreatic Cancer

Newly Diagnosed Relative

Posted by gilley @gilley, Dec 18 9:03am

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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gilley | @gilley | Dec 19 6:39pm
In reply to @sheridanb "We didn't know enough to get things faster when my husband was first having problems. They..." + (show)
@sheridanb

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.

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Thank you for sharing your story and advice with me. I’m so sorry that it took a long time for your husband to get a correct diagnosis. That alone leaves so much behind emotionally on top of a very difficult diagnosis.

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gilley | @gilley | Dec 19 6:40pm
In reply to @mnewland99 "There’s a Mayo Clinic in Florida, but if you want things to happen quickly with rising..." + (show)
@mnewland99

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.

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Thank you for your response. I truly appreciate it.

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gilley | @gilley | Dec 19 6:43pm
In reply to @sb4ca "I would suggest that you only go to a pancreatic center of excellence. At least for..." + (show)
@sb4ca

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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Thank you. I will definitely research the list you included and schedule only at a center of excellence.

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marienewland | @mnewland99 | Dec 19 10:21pm
In reply to @caregivercal "My daughter was diagnosed early this year with a much larger tumor in the tail which..." + (show)
@caregivercal

My daughter was diagnosed early this year with a much larger tumor in the tail which had spread to other organs. The hospital she had gone to for severe pain was a Center of Excellence for Pancreatic Cancer and she was admitted where she began her first series of chemo as well as receiving palliative care before being discharged several days later for outpatient biweekly chemo treatments and receives IV liquids a couple of times a week at home.

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@caregivercal
Sorry to hear about your daughter. How is she doing now?

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1 reply
caregivercal | @caregivercal | Dec 21 10:06am
In reply to @mnewland99 "@caregivercal Sorry to hear about your daughter. How is she doing now?" + (show)
@mnewland99

@caregivercal
Sorry to hear about your daughter. How is she doing now?

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She was initially on a chemo cocktail (no details on which) for 6 months and then spent a few weeks on an inhibitor pill and has since started a new and different chemo regime. She is doing as well as possible while adjusting her schedule and activities around side effects.

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1 reply
marienewland | @mnewland99 | Dec 21 10:25am
In reply to @caregivercal "She was initially on a chemo cocktail (no details on which) for 6 months and then..." + (show)
@caregivercal

She was initially on a chemo cocktail (no details on which) for 6 months and then spent a few weeks on an inhibitor pill and has since started a new and different chemo regime. She is doing as well as possible while adjusting her schedule and activities around side effects.

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Sounds like she is doing great as she is able to do activities! Continued good journey to your daughter.

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1 reply
caregivercal | @caregivercal | Dec 21 10:29am
In reply to @mnewland99 "Sounds like she is doing great as she is able to do activities! Continued good journey..." + (show)
@mnewland99

Sounds like she is doing great as she is able to do activities! Continued good journey to your daughter.

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Thank you. She's determined to recover from this disease and I just hope the advancements in treatment will be there for her as she's doing her best to be there for them.

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1 reply
marienewland | @mnewland99 | Dec 21 11:07am
In reply to @caregivercal "Thank you. She's determined to recover from this disease and I just hope the advancements in..." + (show)
@caregivercal

Thank you. She's determined to recover from this disease and I just hope the advancements in treatment will be there for her as she's doing her best to be there for them.

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Yes, a good attitude is very helpful in the fight. Some mutations already allow some to beat this disease if you know how to and have a good medical team to lead or back you.

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