Where is best place to go for second opinion for stage 4 pancreatic?

Posted by wheatley @wheatley, Nov 2, 2023

I was diagnosed in December 2021. I have done 12 chemos (FILFORX) followed by 8 SBRTs five to the Pancreas in Three to liver. All completed in August 2022. Stayed off of all treatment, but continued to get scans until April 2023. CA 19 continued to gradually rise from about 150 up to now is 2100. In April 2023 I started back on the same chemo treatment minus oxyplatin. Cannot figure out why CA 19 continues to rise yet stands show no disease progression that’s why I’m wondering if I should go somewhere else for a second opinion any thoughts would be greatly appreciate it.

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

@burta3

Yes I would definitely like a second opinion.

They found 3 small leisons on her liver meaning she is not a candidate for surgery here in Edmonton but our dr said some centers like the mayo clinic are doing things like the whipper procedure and removing the liver lesions at the time. Do you know if the Mayo clinic does this?

We don’t have the liver biopsy done yet tho. They can’t get my mom in until next week.

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Yes, Mayo Clinic does Whipple surgery. Dr. Truty is a lead oncology surgeon at Mayo Clinic. You may wish to search for him on Google or in the discussions here on Mayo Clinic Connect to connect with pancreatic patients and caregivers who have been to Mayo Clinic. Simply use the search terms "Truty" or "Mayo" in the search field of the Pancreatic Cancer support group here: https://connect.mayoclinic.org/group/pancreatic-cancer/

You can also start with this video:
https://youtu.be/AI6rutMIxV8

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@colleenyoung

Yes, Mayo Clinic does Whipple surgery. Dr. Truty is a lead oncology surgeon at Mayo Clinic. You may wish to search for him on Google or in the discussions here on Mayo Clinic Connect to connect with pancreatic patients and caregivers who have been to Mayo Clinic. Simply use the search terms "Truty" or "Mayo" in the search field of the Pancreatic Cancer support group here: https://connect.mayoclinic.org/group/pancreatic-cancer/

You can also start with this video:
https://youtu.be/AI6rutMIxV8

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Do you know if he removes the lesions on the liver first

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@burta3

Do you know if he removes the lesions on the liver first

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That would likely depend on the specifics of your mom's diagnosis. Others like @stageivsurvivor @markymarkfl @susan2018 @bobsrdoch @ashley2235 @rod54 may be able to share more.

You might also be interested in this related discussion:
- My HIPEC experience and pancreatic cancer https://connect.mayoclinic.org/discussion/hipec-1/

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@hbtb2356

MD Anderson is located right next to Baptist Medical Center downtown Jacksonville. I’ve known others who were diagnosed through Baptist Medical Center and received treatments at MD Anderson so they do work together. They’re oncologists do work with oncologist through Baptist.

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Ah - OK, sure, MDA, like Mayo, "works with" several hospital systems - but, it looks like CSNF is privately owned - not "part of" though ... my advice is always the same with pancreatic cancer - after diagnosis is confirmed, relocate to the area where a center of excellence is, and remain throughout your treatment. Many believe that oncology can be done most anywhere - my sense is that centers of excellence are excellent at oncology as well as diagnosis and analysis and surgery.

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@colleenyoung

That would likely depend on the specifics of your mom's diagnosis. Others like @stageivsurvivor @markymarkfl @susan2018 @bobsrdoch @ashley2235 @rod54 may be able to share more.

You might also be interested in this related discussion:
- My HIPEC experience and pancreatic cancer https://connect.mayoclinic.org/discussion/hipec-1/

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Thank you!

Do you know if it’s a long wait to get into the mayo clinic?

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@burta3

Thank you!

Do you know if it’s a long wait to get into the mayo clinic?

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Again, that depends on multiple factors including clinic current capacity, patient diagnosis urgency, among other factors that I couldn’t predict. But worth inquiring. An appointment coordinator at each of the campuses will be able to inform you specific to your mom’s situation and the availability of appointments. Fingers crossed!

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@colleenyoung

Welcome @burta3. You will also be interested in this recent discussion to which I have moved your question. Click the link to read previous posts as well as the helpful posts you have received thus far
- Where is best place to go for second opinion for stage 4 pancreatic?
https://connect.mayoclinic.org/discussion/where-is-best-place-to-go-for-second-opinion-for-stage-4-pancreatic/
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I agree with @wjk, that your location and your mother's ability and desire to travel are important considerations when choosing a center of excellence for pancreatic cancer. In Canada, you have several premier options like the Princess Margaret Cancer Centre in Toronto, Tom Baker Cancer Centre in Calgary, BC Cancer Agency in Vancouver, etc. I'm tagging a few fellow Canadian members like @naomicanada @waiting84 @krfinlayson @nunz12 to share their experiences with getting care.

As you can expect, I recommend Mayo Clinic should you wish to consider care in the US.
The Mayo Clinic Comprehensive Cancer Center has held its National Cancer Institute (NCI) cancer center designation since 1973. All 3 campuses in Arizona, Florida and Minnesota are ranked among the Best Hospitals for cancer by U.S. News & World Report.

- Pancreatic Cancer Care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/care-at-mayo-clinic/mac-20355431

You can call Mayo Clinic to talk to an appointment coordinator to learn more about seeking care. To get started: http://mayocl.in/1mtmR63

And to address your other question: YES, there is hope. I'm sure you are reeling from this news and have many questions. I look forward to helping you get answers from others who have walked this path before you. Keep asking questions. 🙂

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My sister in law’s journey was really complicated, she was diagnosed at stage 4 but her oncologist would not recommend or refer her to another oncologist he said they could not perform any surgery therefore the protocol would be same, she was in excruciating pain so could not travel and medication was every 2 hours so basically she felt she had no choice of another opinion. She developed ashites and then water in her lungs and severe edema in her legs.
She recently passed on but she fought hard and gave us strength and always had a strong faith to help her through her journey. She is missed terribly. Everyone’s journey is different and I have heard some amazing stories, never give up and I pray for everyone on this site for courage and strength and much support.
God bless

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@restless1763

I had a Whipple surgery for ampullary cancer (treated as pancreatic) at St. Joseph’s Hospital in Toronto by Dr. Shiva Jayaraman. I was stage 2 so surgery was an immediate option but it might be worth a consult with him. He was highly recommended to me.

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Hi @restless1763 and welcome to another Canuck. You might be interested in joining these discussions about ampullary cancer here: https://connect.mayoclinic.org/search/discussions/?search=ampullary+cancer

Did you have any treatment after surgery? How are you doing now?

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@colleenyoung

Hi @restless1763 and welcome to another Canuck. You might be interested in joining these discussions about ampullary cancer here: https://connect.mayoclinic.org/search/discussions/?search=ampullary+cancer

Did you have any treatment after surgery? How are you doing now?

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Thank you, I will join that conversation. I am still coping with the ongoing issues people have after Whipple surgery and continue to be monitored every 3 or 6 months as issues arise. I did 6 months of chemotherapy after surgery which was hard and I lost about 2/5ths of my weight. Just as I was starting to feel like the worst of things were past I was diagnosed, after a routine scan, with a primary lung cancer and had my LUL removed in August. Caught early so only surveillance required and just trying to improve the occasional breathlessness and getting some strength back. This is my third cancer after breast in 2002 so my mantra is “3 times the charm and I’m done.”

Thanks for reaching out!

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@burta3

Hi there
My mom got diagnosed with pancreatic cancer via biopsy. They biopsied the mass on the head of the pancreas and said they saw lesions on the liver therefore it is stage 4.

Is there hope here?
I’m from Canada and we’re researching the best center as things can take months here in Canada and we want to get started treating this right away.

Any info appreciated!
Thank you

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Of course it's incredibly upsetting to hear "Stage IV," but some people do have atypically good experiences -- so after you nail down getting the best care than you can, perhaps read some of their stories.

A man -- and ?former? medical researcher -- known on this board as @stageivsurvivor has written at length about his experiences; in short, he was diagnosed about 11 years ago, underwent surgery and 46 cycles of FOLFIRINOX (some modified), and is doing very well. He has also mentioned a woman who underwent 37 cycles and is in good shape, also about 11 years after diagnosis.
https://connect.mayoclinic.org/discussion/question-for-newly-diagnosed/?pg=2#comment-970218
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His insights are exceptionally useful, in part bc of his professional training. Here's a link to all of stageivsurvivor's comments on this site:
https://connect.mayoclinic.org/member/00-3a8075b911bad2ae280957/activity/comments/
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markymarkfl is another ultra-valuable source of info; I encourage you to read his comments, too. (I'm pretty sure that he's an engineer, and my sense is that he's able to digest scientific articles, and share results with us, bc of his intellect and education.)

Some short pieces about survivors:
https://letswinpc.org/category/survivor-stories/
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I wish you and your mother (and other loved ones who are involved) all the best -- and I hope that her diagnosis moves her to the head of the line.

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