Pituitary and pNET: Can't do the things I love anymore

Hi, I went through my part 2 of 3 of the embolization and the 3 tumors they went after have gotten smaller but the pain was awful. He did say he was going to hit me hard on the 2nd go around and he didn't lie. I also have many smaller tumors on my lymph glands and more hear and there around the same area. I just have so much pain, is that normal? I also have a high pain tolerance, and feelings of being wrapped in sickness/pain around my torso which is so hard to explain. I have 23 tumors on my liver and more came in after the procedure but the big ones have shrunken, and the same amount in other areas I feel like I am in the dark in knowing what to expect next. I know this is a non-curable cancer. Thank you , Anthony

Hello Anthony, (@sturns)

It is good to hear from you and have an update on your embolization. I'm really sorry to hear of the pain you are experiencing. It is good that many of the tumors have shrunk. You say that you feel like you are "in the dark in knowing what to expect next." Can your doctor or someone on his staff provide you with help in understanding what the next step will be like?

It sounds as if there is one more embolization in the series. Has that been scheduled yet? Have you been given any meds to help with current the pain?

Hi Teresa,
I have one more and we are in the process to schedule it next week. The Dr. said I have time on that one. The meds do help but I still pain but not as bad. In 1999 & 2000 I had 2 pituitary surgeries, 07-14 7 back surgeries and I did well with them, I was in the military and did a lot of jumps, but those never slowed me down until this. I have many questions and hope to get them when I go to Moffitt in a month. Thank you for the questions.
Anthony

Has anyone experienced pain in their hip or lower back from pNET?
Anthony

Was diagnosed in March of this year. Origin in mesentary lining.Metastasized to liver, and elsewhere. I have had right hip and low back pain for years but don’t know if it’s related . Based on scans it doesn’t seem to show a relationship.

@sturns, I'm tagging a few other pancreatic NET members like @ronregency @klpetts @titansmistress @kate12345 @elm60 to help discuss your question about hip and lower back pain.

Sturns, Does your doctor think it may be related? Have you consulted a physiotherapist?

@pjsheridan2022, have you found the cause of your hip and lower back pain? What helped?

Hi @sturns
I have had chronic back pain and hip pain for the last few years now as well. Mine has been diagnosed as a result of bone fractures and sciatica. (Steroid induced mostly caused by osteoporosis)
I broke my pubis ramus(small bone in the bottom of the hip) in 2018 but that actually doesn’t bother me now. On my CT and MRI’s these fracture show up under the heading sclerotic foci meaning they are regions that are either healing, inflamed or just dense. Keep telling the doc what you are experiencing and pain management is an option as well. I hope you get this figured out! 🙏✝️💜