Pancreatic Cancer Stage IV and in partial remission

@beachgirl23, I'd like to bring you into this discussion about pancreatic cancer with @nogginquest, who is also in remission. I hope the two of you can connect here.

Beachgirl you mentioned that you are now getting followup care from an oncologist in a different state than where you had treatment and surgery and that a followup scan indicated scarring from the surgery. Now you are concerned about the cost of a PET scan and wonder if repeated PET scans will be necessary. I think that this would be a good question for the oncologist. It might be that only one PET scan is necessary to get a closer look at the scan to determine next steps. But only your oncologist would know for certain. Are you able to call your oncologist or post a message on a patient portal to get an explanation?

I'd like to also invite @marvinjsturing to this discussion, another person to connect you with @beachgirl23

@beachgirl23 I am a 4 year survivor of pancreatic cancer. My Whipple procedure was done at Mayo in Rochester in June of 2014. I had 6 months of chemo administered by an oncologist at my local hospital here in Iowa. I continue to meet with my local oncologist every 6 months for blood tests and a checkup. I also return to Rochester every 6 months for blood tests, a PET scan and a checkup with oncology. It is my understanding that the PET scans will continue every 6 months until I am cancer free for 5 years. I was told that after pancreatic cancer, doctors typically use a CT scan every 6 months to check for the return of cancer. Because of kidney problems, my body cannot handle the dye used with a CT scan, so I have been having PET scans instead. I know that each person is unique and therefore, the treatment prescribed by your doctor will most likely be different than the treatment I received. Never hesitate to bring your concerns and questions to your doctors. You are your own best advocate for your health. God bless you.

Thank you for your response! I had my pancreatic surgery done in Jan of this year in Fort Myers, Fl General Hospital by Dr. BLOOMSTON. He is great...got all the fingers of my cancer splosh out. Both he and the oncologist were amazed that it was gone. I moved back to RI and have been seeing recommended surgeon and his oncologist at major Clinic here in RI. I just had a ct sczn and because it shows scarring at surgery area they want me to do a pet
Scan for further investigation. I'm Leary since I know insurance only covers so many pet scans and ct scans per person. What is your advice on this?

I am not a doctor and I don't know your medical condition so I can't tell you what you need to do. I can only share with you what I experienced. The PET scans I have had after my surgery assured me that the surgeon had successfully removed all the cancer and the cancer has not come back. I am thankful that so far, my insurance has covered the costs of all my scans.

Hi @beachgirl23 and @marvinjsturing, you'll notice that I moved your messages to this discussion about pancreatic cancer and out of the discussion about melanoma of the eye. 🙂

It sounds like you are in good care, beachgirl. My recommendation is to talk to your doctors about the frequency and type of scan you need now and in the future. I don't want you to worry unnecessarily. As Marvin says, everyone is different. For you, the necessity of a PET scan may only be this once to examine the scarring closely. After that CT scans may be all that is necessary. No one knows excepts your cancer care team who are familiar with your situation specifically. Tell them your concerns about coverage. They can work with your insurance coverage and give you the right followup for you.

Does that make sense? I'd be very interested in hearing the result of you conversation with your oncologist. When are you scheduled for your next visit? When is the PET scan?

Thank you!! The hospital team is supposed to call me to schedule the pet scan....not yet at this time.
My next appt with current oncologist is Nov26th with blood work scheduled for then too.

I read with much interest and enthusiasm your post with stage 4 Pancreatic Cancer. My wife who is in her mid 60's was recently diagnosed with stage 4 non operable pancreatic cancer which has metastasized to her liver. She has never smoked, only a few glasses of champagne a year, no family history of liver or pancreatic cancer, however some family cancer history, father lived into his late mid 80's mother is still living at mid 90's, grandmother 101, grandfather early 80's.
She had increasing amount of mid-back pain which she thought might be pancreatitis. Her local doctors set up an endoscopy and colonoscopy which showed some thickening on the duodenum wall and some irritation on her stomach lining. After a severe pain attack a week later she was set up with some blood work and a CT scan which was sent off to a liver specialist. He then ordered an MRI which she had 10 days later. The blood work showed her tumor markers to be at 1800 and there were a number of tumors on her liver the largest being approx 1 inch in size. The diagnosis was received during a phone call as inoperable metastasized pancreatic cancer, our world was crushed and our future was now in question!
While we do have a very good health care system here in Canada, some of our processes take time and I always worry that it is taking too long. She has an appointment for a liver biopsy in another 2 weeks, and then another week to analysis the sample. So the earliest she would be able to start chemo would be after Christmas. Just just trying to stay positive but the "hurry up and wait" is increasing our anxiety.

Hello @pamelaanne and welcome to Connect,

I am sorry to hear of your wife's recent diagnosis of inoperable metastasized pancreatic cancer. I can certainly understand why you would say, "our world was crushed." I would encourage you to look at a video about early detection of pancreatic cancer. This video also has information about pancreatic cancer care. Here is the link,
https://connect.mayoclinic.org/webinar/video-qa-about-the-early-detection-of-pancreatic-cancer/ You will also see responses from others who have been diagnosed with this disorder.

Connect, also has another discussion on this topic at this link, https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/. I feel sure that you will learn more about this by reading the posts and asking questions of the members who have posted.

You mentioned that the first symptom was mid-back pain. How is she feeling now? Are there any other symptoms?

Yes thank you, I have read all of the posts and the one from @nogginquest provides a guarded but very positive prospect.
Presently my wife is suffering a fair bit of mid-back pain and is now taking 4 doses of diclofenac 50 mg suppositories a day (every 6 hours) and potassium chloride as her potassium levels have been low . She also has diarrhea and was given a prescription for some pancreatic enzymes. Interesting to note that she hasn't shown any signs of yellowing skin or had fatty substances in her stools. Other than the diarrhea her energy levels are dropping off and she is still loosing some weight, but is trying to eat well.
We were both on the Ketogenic lifestyle (low carbs and sugars replaced with high fats. protein and lots of vegetables ) as her doctor told her last year after knee replacement surgery that it would help to shed some extra pounds. To date she has lost 65 lbs, now down to 175 lbs, however the last few months she has lost most of the weight, probably more related to the cancer than the lifestyle. Her medical Oncologist advised her to get off the Keto lifestyle and eat a well balanced diet.
We will be talking to the dietitian tomorrow so will have a better idea as to what is best to eat moving forward.