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

Posted by k13 @k13, Jan 16 6:51am

I tried to post but don’t know if it went through. My husband just diagnosed w pancreatic cancer. 59 yrs old. Med oncology Dr in CT hospital says maybe some spread but they need to do pet scan later in week. He says probably can’t operate. But surgeon said he needs to see pet scan before making decision.
We r going to Dana Farber tomorrow in Boston for second opinion. Anyone have experience there? Any promising Clinical trials ?
Also anyone know about PEMF – pulsed electromagnet field therapy ? A friend claims it helped cure his pancreatic cancer. I’m reading there have been a few trials and some success with it.
How about ivermectin? I read there has been success using it as it kills cancer cells.
This is all so new. How do I decide which hospital is best for treatment? I live in ct.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Hi,
I’m a 59 year and have pancreatic cancer. I also went to Dana Faber in Boston to get a second a year and half ago. I saw Dr. Brian Wolfin after doing some research and saw he has treated my cancer type.
https://www.dana-farber.org/find-a-doctor/brian-m-wolpin/?utm_source=google&utm_medium=organic&utm_content=bwolpin&utm_campaign=googlemybusiness
Anyone you see there will be great as it one of the best hospitals for cancer. They asked if they could have a biopsy of my cancer for research which I gladly let them have. They also had me do Genetic testing.

I’m also interested in any clinical trial they may have. I was told by Dana Faber I have Neuroendocrine cancer combined with a rare Acinar cancer that is only in 1% of all pancreas cancers. I would love to hear the outcome of your appointment. You can post or message me.
Good luck on the appointment. Sending Prayers 🙏🏻🙏🏻🙏🏻

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Welcome, @k13. Deciding where to get treatment is important. I hope you saw the warm welcome from @thawk32, who went to Dana Farber as did fellow members @granite and @cathyras. Naturally, I recommend Mayo Clinic 🙂

I see that you are interested in clinical trial. These related discussions may be of interest to you:
– Is anyone participating in a clinical trial for pancreatic cancer? https://connect.mayoclinic.org/discussion/clinical-trials-1/
– Pancreatic Cancer Trials that look promising https://connect.mayoclinic.org/discussion/trial-in-germany-looks-promising/

When evaluating clinical trials or news articles touting new advances in cancer treatments, be sure to note the phase of the trial. Is the trial about a promising new drug being done in human clinical trials or still being tested in vitro (test tube, lab) or in vivo (mice)? Is it a phase I, II or III human trial? Be wary of claims of cancer cures.

To learn more about pancreatic clinical trials available you can call Mayo Clinic Cancer Research 855-776-0015 (toll-free). A research coordinator can answer questions, discuss your needs and help locate research studies that match your interests. They can also provide interpreter services for non-English-speaking patients. Read more here: https://www.mayo.edu/research/clinical-trials

All the best at your appointment tomorrow. I'll be interested in hearing what you learn. I know this is all new. Keep asking questions. Members who have traveled this path before you are ready to help.

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k13,

Some questions?
– where is the tumor?
– what size is the tumor?
– how does anyone know without PET and CT there has been metastasis?
– what are the CA 19-9 and CA 125 blood marker test numbers?
– has there been biopsy with endoscopic ultrasound (EUS)?

Sorry for all the questions, but as your husband's advocate, this is just the surface of what you need to understand.

We're all with you … please let us know?

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@thawk32

Hi,
I’m a 59 year and have pancreatic cancer. I also went to Dana Faber in Boston to get a second a year and half ago. I saw Dr. Brian Wolfin after doing some research and saw he has treated my cancer type.
https://www.dana-farber.org/find-a-doctor/brian-m-wolpin/?utm_source=google&utm_medium=organic&utm_content=bwolpin&utm_campaign=googlemybusiness
Anyone you see there will be great as it one of the best hospitals for cancer. They asked if they could have a biopsy of my cancer for research which I gladly let them have. They also had me do Genetic testing.

I’m also interested in any clinical trial they may have. I was told by Dana Faber I have Neuroendocrine cancer combined with a rare Acinar cancer that is only in 1% of all pancreas cancers. I would love to hear the outcome of your appointment. You can post or message me.
Good luck on the appointment. Sending Prayers 🙏🏻🙏🏻🙏🏻

Jump to this post

Thank you for reply. I was given Dr Wolpin's name by another person as well. I believe he is the head of the group. We are not seeing him, as he is unavailable today. We will see 3 others on his team—med. oncologist, radiologist and surgeon. I will keep you posted. The Hartford drs recommended the genetic testing too, and I have a call in to get that done. It appears from their website that there is only one clinical trial open. We will ask. I think DF can also access MGH trials, as they are all under the same umbrella now. Thank you for reply, and prayers. We are praying to Fr Michael McGivney, founder of Knights of Columbus.

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@mayoconnectuser1

k13,

Some questions?
– where is the tumor?
– what size is the tumor?
– how does anyone know without PET and CT there has been metastasis?
– what are the CA 19-9 and CA 125 blood marker test numbers?
– has there been biopsy with endoscopic ultrasound (EUS)?

Sorry for all the questions, but as your husband's advocate, this is just the surface of what you need to understand.

We're all with you … please let us know?

Jump to this post

HI- Yes, yes, still lots of questions, I know…. Tumor is 5.8 cm, on the head of the pancreas. There was a CT scan, and they thought there may be spread to lymph nodes. They need the Pet Scan. That is being done on Friday. They discussed the CA19-9 markers, and we are awaiting those results. The biopsy was done when my husband had a stent put in. He did have ultrasound and they also took biopsy when they put the stent in. It was malignant.
Thank you all for these quick responses. It's so scary to navigate alone. Thank you for the support. Leaving now for Dana Farber… Kathy.

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@k13

Thank you for reply. I was given Dr Wolpin's name by another person as well. I believe he is the head of the group. We are not seeing him, as he is unavailable today. We will see 3 others on his team—med. oncologist, radiologist and surgeon. I will keep you posted. The Hartford drs recommended the genetic testing too, and I have a call in to get that done. It appears from their website that there is only one clinical trial open. We will ask. I think DF can also access MGH trials, as they are all under the same umbrella now. Thank you for reply, and prayers. We are praying to Fr Michael McGivney, founder of Knights of Columbus.

Jump to this post

Good Morning,
They may ask to have a biopsy which I had done at my local hospital and they sent to DF. I went to DF for a second option as my cancer is rare and they told me the treatments I’m doing locally would be the same treatment plan they would do for me. Do you know the Cancer type?

Keep in touch and good luck on the appointment

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K13,

The stent was a biliary stent? Plastic or metal? (goes to the surgeon's planning horizon).

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@thawk32

Good Morning,
They may ask to have a biopsy which I had done at my local hospital and they sent to DF. I went to DF for a second option as my cancer is rare and they told me the treatments I’m doing locally would be the same treatment plan they would do for me. Do you know the Cancer type?

Keep in touch and good luck on the appointment

Jump to this post

DF told me same thing. That the chemo treatments would be the same at Hartford Hospital , (which is where we started,) as at DF. I pushed back a bit, and asked if there were any pros to using DF, since it is renowned cancer center. My take is –things are the same in the beginning when you start treatment, and "chemo is chemo," but if there are problems along the way, DF would probably be a better place to be. It's about life balance, I guess, and where you want to be getting your treatments. Some don't want to drive to DF, and are more comfortable elsewhere, (with comforts of home, etc.) is the way the drs explained it.
Unfortunately, I think my husband has a very difficult situation, and the cancer appears to have spread to lymph nodes. All we can do is pray, and hope the chemo is effective. There are no trials or anything else DF can do. I'm praying every day at Mass. Thanks for all the input.

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@k13

DF told me same thing. That the chemo treatments would be the same at Hartford Hospital , (which is where we started,) as at DF. I pushed back a bit, and asked if there were any pros to using DF, since it is renowned cancer center. My take is –things are the same in the beginning when you start treatment, and "chemo is chemo," but if there are problems along the way, DF would probably be a better place to be. It's about life balance, I guess, and where you want to be getting your treatments. Some don't want to drive to DF, and are more comfortable elsewhere, (with comforts of home, etc.) is the way the drs explained it.
Unfortunately, I think my husband has a very difficult situation, and the cancer appears to have spread to lymph nodes. All we can do is pray, and hope the chemo is effective. There are no trials or anything else DF can do. I'm praying every day at Mass. Thanks for all the input.

Jump to this post

I still have my doctor at DF in the loop. All my scans and reports are sent to them to keep them updated. I recommend you contact PanCan and they will put you in a database for any clinical trials that come available.
Sending out a my prayers. 🙏🏻🙏🏻🙏🏻

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k13,

My sense is that chemo-is-chemo is an accurate synopsis. Do it wherever it is most comfortable.

Was the stent a biliary stent – plastic or metal?

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