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.

mayoconnectuser1 | @mayoconnectuser1 | Nov 25, 2023

In reply to @hbtb2356 "My husband was diagnosed with stage 4 in October. Same scenario. He’s had 3 rounds of..." + (show)

I don’t note a reference of a relationship with MD Anderson.

Can you provide a link with this?

This doesn’t ref MDA … do I have correct company?
https://cancerspecialistsnf.com/about/our-practice/

ncteacher | @ncteacher | Nov 25, 2023

In reply to @mayoconnectuser1 "I don’t note a reference of a relationship with MD Anderson. Can you provide a link..." + (show)

https://www.mdanderson.org/about-md-anderson/our-locations/md-anderson-cancer-network/network-partners.html
Baptist M.D. Anderson Cancer Center in Jacksonville is listed as a domestic partner of M.D. Anderson, per this list. I do recall seeing the M.D. Anderson sign on a building in downtown Jax when we drove through there in October. I don't know about Cancer Specialists of North Florida.

hbtb2356 | @hbtb2356 | Nov 25, 2023

In reply to @burta3 "Hi there My mom got diagnosed with pancreatic cancer via biopsy. They biopsied the mass on..." + (show)

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.

hbtb2356 | @hbtb2356 | Nov 25, 2023

In reply to @altc321 "Can you share some of your concerns about Mayo JAX without getting into personal detail? My..." + (show)

My son was diagnosed with testicular cancer in 2013. He was 22 years old. He had surgery to remove the tumor. A few months later his tumor marker numbers began to rise and his oncologist at N. Florida Cancer Center Wanted to proceed with chemo immediately. we went to Mayo for a second opinion and their testicular cancer specialist suggested that we take a wait and see approach. He said that if the cancer spread into his lymph nodes it would still be the same treatment. That suggestion totally turned me off to Mayo and we began chemo treatments at N. Florida Cancer Center. it has been 10 years. He is cancer free and he is thriving. I know Mayo offers several clinical trials, which we would not be opposed to. If his cancer does not respond to the chemo treatments, he’s receiving now I will consider mayo. I know several people who absolutely love mayo and wouldn’t go anywhere else. I also know some people that I’ve had negative results with mayo, so I really do not know.

mayoconnectuser1 | @mayoconnectuser1 | Nov 25, 2023

In reply to @burta3 "Hi there My mom got diagnosed with pancreatic cancer via biopsy. They biopsied the mass on..." + (show)

So, is there a link showing CSNF is connected with MDA?

altc321 | @altc321 | Nov 25, 2023

In reply to @hbtb2356 "My son was diagnosed with testicular cancer in 2013. He was 22 years old. He had..." + (show)

Thank you so much….. very much appreciated. I’m so happy to hear of your son’s recovery ❤️

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023

In reply to @burta3 "Hi there My mom got diagnosed with pancreatic cancer via biopsy. They biopsied the mass on..." + (show)

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/
.
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. 🙂

burta3 | @burta3 | Nov 25, 2023

In reply to @colleenyoung "Welcome @burta3. You will also be interested in this recent discussion to which I have moved..." + (show)

Hi thank you!

We are from Edmonton Alberta and in our community things take forever. It’s been a week and we don’t even have a referral to the cancer clinic.

I started researching and the Mayo Clinic came up.

She is fully able to travel. She hasn’t lost any weight. And doesn’t have alot of symptoms so we are looking to go where the best is as she is fit to go anywhere

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023

In reply to @burta3 "Hi thank you! We are from Edmonton Alberta and in our community things take forever. It’s..." + (show)

I can understand your desire to get moving with things. Thankfully, your mom is able to travel. As you research more about Mayo Clinic, you might find it helpful to read and join these related discussions to connect with other members who have been to Mayo and others who have been to other centers of excellence:
https://connect.mayoclinic.org/group/pancreatic-cancer/?search=Mayo&index=discussions
You'll note that some of the discussion topics include getting an evaluation at Mayo Clinic, possibly treatment like surgery, but continuing treatment that requires frequent administration locally at home like Mayo recommended radiation protocol or chemotherapy, immunotherapy, etc. Mayo Clinic experts could work together with experts in Edmonton, which I assume would be the Cross Cancer Institute.

Do you know if she is a candidate for surgery or not?

burta3 | @burta3 | Nov 25, 2023

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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