Pancreatic cancer: How do I decide which hospital is best?

Similar situation. Diagnosed in April and told we could have treatment a few miles from home. An Anecdotal lesson is to keep in mind the MRI equipment at DF is far superior to that of a local hospital. I expect the same is true of CT scans. Unfortunately, we did not realize that the 10 rounds of Folfirinox was ineffective until the DF pathology report came back after the DF Whipple.
Perhaps we would have been able to switch treatment months sooner If DF was in charge. Unfortunately, we had an overly optimistic local oncologist who guessed at shadows with the CT scanner radiologist—neither were pancreatic specialists. Local oncologist suggested my husband was NED! Too cavalier to read pathology report showing out of 31 lymph nodes were involved. Spouse is back in Boston for weekly treatment for another 6 months.

Thanks for that input.

Metal. The surgeon suspected malignancy so wanted a more permanent stent …..

Hello again. We were at DF yesterday too. In answer to your earlier question, the dog wormer/Joe Tippen protocol came up in a conversation with a PA before spouse’s infusion last week. (We wouldn’t have wasted the oncologist’s time with it.) DF does not endorse this so called treatment in any way.

Also, consider the local hospital is fine for emergencies that arise from pancreatitis to become stabilized or for transport. They use pain relief and fluids. He has had 4 hospitalizations in addition to Whipple so far. Most of these related to the stent—put in by competent surgeon at Burlington Lahey.

DF plans to arrange a weekly infusion of extra fluids at our local hospital in between DF weekly treatments—per yesterday’s conversation with DF PA.

Also meant to say in last post, he had 4 lymph nodes involved out of 31. Margins clear. But he has a BRAF type replication error—not the more common BRCA.

He still works out, but has lost 30lbs.

While the chemo protocols using same chemo drugs at different institutions may be true, the knowledge and skill sets of the treating oncologist differed. While all pancreatic cancer oncology specialists are GI Cancer oncologists, the reverse goes not always apply. Very few GI cancer oncologists have the sub-specialty in treating cancers of the pancreas.

Pancreatic cancer is not only a rare cancer with approximately 62,000 cases diagnosed in 2022, but it is a challenging cancer to treat. In the NCI designated excellence in cancer treatment medical centers with a pancreas program is where you will find pancreatic cancer oncologists with the higher level of knowledge and experience. In my going on 11 years as a survivor of stage IV disease, I have mentored many patients and my recommendation was in being treated in a high volume center treating pancreas patients. I encountered two individuals who chose to be treated at either a small regional medical center or a local infusion clinic. Both has severe reactions that resulted in going into ICU from severe reactions. It wasn’t a single reaction each had but had reactions with each treatment. It was later learned that neither treating oncologist had treated a pancreatic cancer patient or had no experience in using Folfirinox or in adjusting the concentration or had knowledge of using metronomic dosing.

When I did my treatments over the course of two years, I had two nearby medical centers each within three miles of my home as well as an infusion clinic. I chose going to the tertiary medical center where I had my Whipple surgery as well as going there for all surveillance scans. There was familiarity with my case and consistency in imaging instrumentation and the radiologists interpreting the scans. The appointments required a round trip by train/subway of 4’20” minutes and I managed although challenging at times. The medical center had pancreatic cancer oncologists and a pancreas program. They were on top of the treatments.

And the oncologists were able to think outside the box. I advocated for more aggressive treatment because my goal was more than achieving NED….it was curative although that was thought highly unlikely. Because of concern of neuropathy with getting in excess of 12 cycles, my oncologist decided to do six cycles of Folfirinox followed by six cycles of 5-FU/Leucovorin. This alternate dosing schedule was used over the course of 24 months and in the end I had received 24 cycles of Folfirinox and 22 cycles of 5-FU/Leucovorin for a total of 46 cycles. Although I did experience neuropathy, it was far less than what the average patient seems to experience and likely the result of a more experienced oncologist with the expertise in treating pancreatic cancer patients. The neuropathy in the fingers and cold sensitivity in the hands cleared first and completely. The feet cleared as well but took significantly longer. I know of other long-term survivors such as myself who were not treated using alternate cycles and likely have permanent neuropathy.

While it may be inconvenient to travel to a high volume center, the benefits for me far outweighed the inconveniences. I not only survived almost 11 years now, but I have a very good quality of live and in 2022 was declared cured. A long wait since being declared NED in 2016 to hear the word “cured”.

wow. Thank you so much for that encouraging response. We have decided to use Dana Farber and called for our first appointment yesterday. It's a two hour drive, but we plan to get an apartment in Boston; my 2 children live there, so we can be close to them as well a few days a week, which I hope will provide positive attitude/family time benefits for all.
We thought better to be around pancreatic specialists at DF --similar to the reasons you articulated above. The PET scan was done yesterday, and Hartford Dr called back yesterday to say it's not good- I haven't seen written report but he said it confirmed spread.
DF is recommending the Folfirinox which Dr. Singh called the more aggressive treatment. He said because my husband is younger (59) and in good health otherwise, he felt he could likely tolerate it. He didn't mention Leucovorin. Is that another type of chemo? He told us there were only two types of chemo. thanks.

thank you for info. Good to know. We did the gene testing at DF on Tuesday, but haven't heard back yet on results. What is the significance/meaning of having the BRAF gene? Does that limit treatment?
I hadn't heard about Joe Tippen, the "dog wormer", but I just looked him up. I had asked the drs about PEMF (pulsating electro magnetic field therapy). There have been some trials/research done on it, but the drs do not seem to embrace it. I did speak with a woman at Cancer Commons and she mentioned she had a case of a woman with ovarian cancer who used it, and was a survivor. Another acquaintance used it and also is a survivor. Perhaps Anecdotal evidence, I know... but willing to try anything. It supposedly has no side effects and can be used in conjunction w Chemo. There are published medical studies.

k13,

Does DF not have a web based information system? Every hospital we use(d) has a portal where reports of scans, blood chemistry, labs, assessments, etc are available as soon as they are written, usually within a couple of hours.

To be an effective advocate requires reading/studying these reports (BTW, at Mayo the scans themselves are available at one's portal) - it is hard psychologically but is necessary to understand where you are.

Sorry, what is DF in this thread?

Never mind, now see it is Dana Farber.
Has anyone been seen or used Dr Motaz Qadan at Mass General?