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Pain relief when lying flat?
Hello. I was diagnosed with NETs in February 2023: stage 4, grade 2, well-differentiated low-grade primary 5cm tumor in small intestine, Ki-67 5.4%, with METs in liver - "more than 15", lymph nodes, peritoneum, pelvis and ovaries. I have been on a wait and watch protocol since diagnosis. Recently the pain, that used to be sporadic under my right rib cage area, has become much more frequent (daily), intense and often wraps around to my right back or radiates across my abdomen. When I lie down flat at night to go to bed, the pain can be absolutely excruciating to the point I curl up in the fetal position on my side until it subsides. Since reporting this to Dr. Starr's office recently, they set up scans for late in the day this coming Wednesday. What I could use some help with, if anyone else has this pain frequency and intensity issue when lying flat, is what works to mitigate the pain (at least enough so I can lie flat and still). I'm dreading trying to manage the intense pain, knowing I have to lie absolutely still for a good picture of what is now happening that is causing this intense pain. Thanks for any thoughts or advice.
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I would most certainly share this with your doctors and techs before any scan. They should prescribe some pain killers and tell you how/when to take them. If you are concerned about how you'll react, you might include a trial dose for the day before so you can get used to it.
This sounds like untreated severe pain, and as a cancer patient you should not have to solve this problem yourself. Please be in touch with your doctors. It seems like you might need pain control 24/7. It is always best to keep the control continuous rather than waiting for a spike. I've had chronic pain for 50 years but now that I'm a cancer patient I have better pain control in general because doctors are less hesitant to prescribe in a oncological situation. Wishing you the best.
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3 ReactionsMaybe you can schedule an appointment with a pain management clinic. That might require a referral from your oncologist, but it would be good if both providers communicated freely with each other.
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1 ReactionThank you. I am mildly discouraged at the response I received when I asked the oncology office for help. I don't feel her response recognized my sincere (I am not a complainer or hypochondriac which is a little how I felt) concern about the pain and discomfort and how it could affect the quality of the scans they need to determine what is occurring with my cancer. I was advised to take 2 Advil and a Xanax for my claustrophobia (which they already knew about). Anyhow, the scans are tomorrow and I'll do my best and hope for one of my good days with little to no pain.
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2 ReactionsThank you. I do have a pain doctor at Mayo - for another (random?) nerve pain issue I had. I think you are right and once I know what the scans show, what I am dealing with, and what oncology recommends, I'll contact them for ongoing pain management assistance with this abdominal pain: coordinating that pain management with oncology recommendations . It's probably the liver METs but hopefully I can get some help with this pain. As you say, coordination of communications from the different specialties is important.
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1 ReactionUnfortunately many health care professionals aren't trained to take pain seriously.
I would encourage you to insist on pain control.
If your current Dr. isn't listen you can file a complaint with the group or the medical association. I know this takes energy but it will be worth it.