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Newly diagnosed with pancreatic mass — What questions to ask?
I have just been told I have a mass on my pancreas and two small ones on my liver. A biopsy has been done (no results yet).
My first oncology appointment is next week. What questions do I need to be asking? Obviously I want a definitive diagnosis - what else??
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@blakebloom When you say mass on your pancreas and liver, if you mean cysts, I have had several cysts on my liver since 2004 and last month found out I had a cyst on my pancreas. I've never had any problems with the liver cysts, but I get an ultrasound every 4 or 5 years now just to check them out. They've never gotten any bigger and actually have gotten smaller at times.
The cyst on my pancreas was found on an ultrasound while checking on the liver cysts. An MRCP MRI was then done, and the gastroenterologist then sent me to have an endoscopic ultrasound, which was done October 17. A biopsy was done at that time on the cyst which thankfully came back negative for malignancy. I have to go back in 6 months and have snother MRCP MRI to check the status of the cyst. I'm hoping for continued good luck.
I know it's hard waiting for the results. I knew my results were in because the hospital notified me, but after a week I couldn't wait any longer for the doctor to call me. So, I went to the hospital where I had it done and got the report myself. His office finally called a couple of days later, 10 days after the results were available. So, you might think of checking with the facility where you had the biopsy to see if the report is ready. Doctors don't get in any hurry.
Hopefully, your biopsy also comes back negative for malignancy. All the best to you.
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4 ReactionsSeveral links on questions to ask regarding treatment as well as one if surgery is an option-
QUESTIONS TO ASK
https://pathology.jhu.edu/pancreas/questions-to-ask
https://www.cancer.org/cancer/pancreatic-cancer/detection-diagnosis-staging/talking-with-doctor.html
https://michaelkoeplinmd.com/5-questions-ask-surgeon-pancreas-surgery/
For those newly diagnosed, two sites with comprehensive information that will be helpful in starting and going through treatment-
https://pancan.org/facing-pancreatic-cancer/diagnosis/recently-diagnosed/
https://letswinpc.org/newly-diagnosed/
If (m)Folfirinox is the choice for chemotherapy, you will want to discuss prevention of peripheral neuropathy from the oxaliplatin component using “cold therapy”.
NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING
LetsWinPC.org feature story on cold therapy
https://letswinpc.org/disease-management/ice-prevent-neuropathy/
https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/
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8 ReactionsGreat links, and I'm jealous of Dave's lab.
Abraxane to a large degree, and cisplatin to a lesser degree also cause chemo-induced peripheral neuropathy, and some studies have shown that compression therapy (alone or in combination with icing) can help. Compression alone is better than nothing for patients who can't tolerate the cold, and easier to use.
https://www.curetoday.com/view/cold-compression-may-prevent-chemo-induced-neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/ (duplicate of your last link)
Icing (or at least cooling) may reduce the hair loss from Abraxane as well. I don't know how cold it has to be. It sounds more feasible than compression on the head, but it might be amusing observe some experiments in that area. 😉
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3 ReactionsFWIW, my oncologist stopped oxaliplatin after 8 cycles. He said that when he first began practice, physicians would continue with the Folfirinox regimen including oxaliplatin until the patient couldn't handle it anymore. By then, the neuropathy was painful, crippling and permanent. He said now he stops oxaliplatin after 8 cycles in an attempt to keep neuropathy at bay. Indeed, my neuropathy, which was still fairly mild, has resolved. Is this right for other patients? I have no idea; there seems to be such variation in treatment approaches. I have fortunately responded well to the overall Folfirinox-now-Folfiri treatment, so perhaps that's one reason my MD felt justified in dropping the oxali. But I mention it in case this info is of use to someone.
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4 ReactionsThanks for the heads up. I already have severe neuropathy from an injury and I definitely need to avoid making it worse.
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1 Reaction@caroline24
Glad your biopsy came back negative. I'm also happy to hear that your liver cysts have not been troublesome to date. I'm having an MRCP MRI on 12/6 for a 7 mm pancreatic cyst. I'm hoping that will be sufficient and they won't even suggest the EUS afterwards. I'm also hoping they can get a better look at the several small liver cysts while there. I don't like reading CT reports that say probably just cysts, but too small to characterize. That's a little vague for me.
I had one liver cyst for many, many years, maybe since birth, who knows, so I wasn't worried about that one. But in the last two years several more liver cysts have popped up which seems concerning to me especially since I already have both advanced breast cancer and neuroendocrine lung cancer. Neuroendocrine cancers can present as cysts. I also have the BRCA2 mutation so have a higher risk for pancreatic cancer. It will be good to have the MRCP for peace of mind. Hoping we can just monitor that, but should things go south, I'll remember to re-visit all the good info in these discussions. Thanks to all who have contributed info here including @stageivsurvivor and @markymarkfl who have provided a lot of valuable info. It's always great to hear survivor stories.
Since I also have trouble with a rare pre-existing neuropathy that's a key concern for me. I was already told by my breast oncologist that chemo for breast cancer would leave me in permanent pain. He did later say he didn't believe it would be effective for me anyway, but if another type of cancer pops up, knowledge is power. Blessings to all.
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5 ReactionsThe discovery that cold therapy can prevent peripheral neuropathy going back a number of years within the colon cancer community has led to many now able to continue with the 12 cycles of Folfirinox. It has significantly increased the quality of life in these patients. The oncologist co-chair I serve under on the GI Cancers Committee of ECOG-ACRIN was one the the oncologists involved the phase II clinical trial and based on the positive results of that trial, offers it to all her patients.
When I had the 24 cycles of Folfirinox, the benefits of “cold therapy was not yet known”. Although I experienced peripheral neuropathy which did resolve after several years, doing the recommended dosing with oxaliplatin and doing twice the number of cycles likely contributed to achieving N.E.D, surviving stage IV disease 11.5 years and now being considered cured.
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7 Reactions@californiazebra
Wishing you all the best on your 12/6 MRCP MRI.
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2 ReactionsHello @californiazebra
As I recall you were going to have procedure on 12/6 to take a closer look at a pancreatic cyst. Did your medical team gather any information from that test?
Hi @hopeful33250
I had the MRCP MRI and the report indicated the pancreatic cyst noted on the CT is not a cyst or mass but likely due to volume averaging with adjacent peripancreatic fat of no clinical significance. Phew! Thanks for asking.
I said to my oncologist, “and you were telling me to gain weight.” LOL
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