My dad was just diagnosed with Pancreatic Cancer.

[Dark n Stormy Knight]

It's spread to his liver. He has diabetes, which probably contributed to this developing, and has had two major heart procedures over the past 20 years. He's 83.

I'm trying to figure out if any of the various orgs I'm seeing online are legit. The two I've mostly looked at, the National Pancreas Foundation (NPF), https://pancreasfoundation.org/npf-centers-info/ and the Pancreatic Cancer Action Network (PanCAN--you have to sumit a from to get a list of their recommended centers, which might be a bad sign but I can't think clearly) hoping for advice on the best treatment center relatively close to him in Hershey, PA.

He goes to Hershey Med, which is right there. But I'd like to help them find out if that's the best choice. There's a NPF "approved" center an hour north: Geisinger Medical Center, which I've shared with my parents.

But it hit me after I did that I can't tell if these foundations or orgs or whatever are legit or just marketing. I don't know whether to look for reviews online, like Yelp, or, I just don't know. Any advice on would be welcome.

I understand that my dad's prognosis isn't good no matter where he goes. He's not a candidate for surgery. So radiation and/or chemo. I just want to help him find the best care. Whatever that means. They are relatively OK financially, but certainly not with unlimited funds.

[captain queeg]

1. I have a form of cancer and found a web group called smart patients

They have forums for all sorts of cancer as well as other things. Good place to read about others’ experience and ask questions. Good luck. I had a pancreatic tumor once but it turned out to be non malignant and went away after a time but it was sure scary, as you know it’s one of the worst.

[Dark n Stormy Knight]

5. Thanks for the info.

Happy to hear your tumor was benign.

[helpisontheway]

2. Prayers to you and your family..🙏🏽🙏🏽🙏🏽Nt

[Dark n Stormy Knight]

6. Thank you.

Dad's a very religious person.

[redwitch]

3. The regional medical center should be fine IMHO.

They follow protocols from the major cancer hospitals. Less wear and tear on patient and caregivers if they are not having to travel far for treatment. All good wishes to you and your family!

[Dark n Stormy Knight]

7. Thanks. So, just to be clear, you mean Hershey Med.

Not the place an hour away with the NPF "approval"?

[redwitch]

19. Yes, sorry! NT

[stopbush]

4. I've been through this with family members.

You are correct that the prognosis is not good.

We went through a lot with my dad - treatment at the Cleveland Clinic, etc. But at the end of the day, the most-useful and -sobering advice we received was from a doctor who was honest with us, and who told my dad and I that he had a very limited time to live, and that he should make the most of that time by spending it with family and doing what he still wanted to do, rather than spending it chasing a non-existent cure that would magically appear to make him an exception to the condition he had. Tough love, but it was taken to heed. It certainly beat the droopy head mumbling one got from many doctors who just don’t want to deal with the emotions involved, and who give false hope at a time when we say we want honesty.

Dad was gone within three months of that discussion, but he did make the most of the time he still had left to him.

[Dark n Stormy Knight]

9. I'm sorry for your loss and what you all had to go through.

I appreciate your input. Do you mean not to bother with treatment at all?

I think Dad understands the reality. But, he plans to get treatment as well as doing following the other advice you mentioned. What I mean about the best care is probably more about making it least awful as possible. So, Hershey Med, ten minutes away, is looking better.

I'm sorry to admit I haven't spoken to him yet. He called my husband yesterday and asked him to break the news to me because I'm a bit defective at handling such things. Every time I try to call, I break down and don't complete the call. I don't think it's awful to be emotional, but I just want to be able to speak. Working on calming down. Got it together to read up on the disease and to write this OP. Hope to call him later today.

This pandemic, of course, complicates things. Not that they're RWers being belligerently ignorant about it, but My siblings haven't been as careful as my husband and I. One of my four sibs is a RWer, but she claims she's being careful. Meanwhile, she sends me a pic her herself and her best friend cheek to cheek on a beach blanket recently.

Not only don't we want my parents to get COVID, we don't want to get sick. So, visiting them is more worrisome than it would have been. Fortunately were only a couple of hours away.

Anyway, rambling now, but thanks again.

[stopbush]

11. We did treatments. But the 50-mile drive to the CC for the treatments

was tough in and of itself.

[Dark n Stormy Knight]

18. Right. So, considering there is virtually no chance Dad will survive this,

the Hershey Med center, just minutes away, is sounding like the best option. Not my decision, of course, but I do have input.

[redstatebluegirl]

8. Hugs to you, I lost my mom to Pancreatic Cancer at age 40.

They know so much more about that disease now than they did in 1971. Prayers for your Dad and your family.

[Dark n Stormy Knight]

10. Thank you. And I'm so sorry for your loss. That must have been very difficult.

Considering all factors, I think Dad and the whole family are pretty much resigned to this being a death sentence, though, as I understand it, he will get chemo. We just hope to ease the way. He's very religious, which I hope will help him through this. The fact of this pandemic, of course, complicates everything.

[stopbush]

12. My mom was very religious. She spent her last days in the hospital,

wondering why Jesus had forsaken her. Her beliefs didn’t help her at all. Sad.

She also died from cancer.

When we went through her things post-mortem, I found stacks of religious crap she had bought over the years from the fear merchants. It included a DVD by Newt Gingrich and his third wife on marriage fidelity. I kid you not! Mom didn’t even own a DVD player.

[Dark n Stormy Knight]

14. Oh my.

Frankly, that's one of the things that has fed my not especially friendly relationship with religion. The same thing happened with my very religious grandmother. Rather than being comforted, in her last days, she was very worried that she had not lived up to god's expectations and was afraid she'd go to Hell. It made me angry.

[redstatebluegirl]

13. Just make sure they keep him comfortable.

My mom was in terrible pain, she chose not to have chemo, she asked to have a do not resuscitate order, we had one. I left to go take a shower, when I got back they had hooked her up to a vent. It took me getting a lawyer to get it removed. She died a few days later. I made sure they kept her morphine drip going, I never left her for three weeks except to take a shower.

Please just make sure they understand his wishes, and they keep the pain meds going. Praying for you and yes, his faith will help him. I am not religious like my mom, but I believe her faith helped her in the end. When she died she had a rosary in her hands and a priest at her side.

[Dark n Stormy Knight]

16. Thanks very much for the advice.

My Dad is a catholic, as well. And I do hope it will help him as it helped your mom. But, see my exchange with stopbush, above. It doesn't always work that way.

[cate94]

15. My sister had pancreatic cancer.

Her daughter convinced her to try chemo b/c radiation wasn’t possible based on the tumor’s location. She had only two treatments and the side effects ruined what could have been the best two weeks she had left. She was gone in about 6 weeks.

The prognosis once it has spread is pretty bleak. Perhaps they’ve come up with better treatments in the past couple of years, I hope so. I’ll say a prayer for you and your dad.

[Dark n Stormy Knight]

17. I'm sorry for your loss. Very sad. But thank you for sharing.

My dad has said he will get chemo. Of course I don't feel I can tell him not to, though I worry about an ordeal like your sister went through. The diagnoses was just yesterday, so it's not settled what he'll do.

I was thinking he has far more time than I'm now realizing he might. Trying to accept this, which I'm not great at.

[cate94]

29. It's hard.

Especially with your dad. My sister’s chemo was 5FU, which is aptly named. I hope they have a less toxic chemo to use now.

[MuseRider]

20. I have a friend

who is in his 50's who last summer was found to have a small tumor in a bile duct. It took a while before they were able to find out that it was actually a metastasis from his pancreas. With all the knowledge of a medical family we were certain he was a goner but he is still with us, clean scans and just finishing up his radiation and the chemo that goes with it. It has been a year long struggle but for now he is essentially cured. There are so many things that can be done but are not always successful. He started at Mayo and was then referred to a doc at KU Medical Center who specializes in bile duct/pancreatic cancer.

My father was diagnosed with this and was dead 10 days later when I was 19 in 1973. Many changes have happened to help people get past this. Good luck. It is a tough go.

[Dark n Stormy Knight]

22. I'm sorry. Losing your father so young must have been especially hard.

My husband lost his mom to lung cancer when he was 15. That loss looms large in his life. Not that we've always had the best of relationships, but I know I've been fortunate to have had my parents for so long. Still, my great grandmother lived to 94, and my mom's great aunt to 104, so I didn't feel it was inevitable that either of my parents would die soon. Even with dad not being a particularly strong candidate for having a lot more years left. I guess I'm sort of in shock right now.

Great news about your friend, though not easy to get through. With his age and co-morbidities, it seems it would take a miracle for my dad to survive this. Of course, it's up to him how to proceed. I'm just trying to be as informed as possible on all aspects. So, thank you for the reply.

[marble falls]

21. My heart goes out to you, but especially your parents. I wish ease and comfort for you all.

[Dark n Stormy Knight]

23. Thank you.

I appreciate that.

[fierywoman]

24. If you want to research alternative therapies, check out the Gerson therapy.

There's a film about it (I got a copy out of my local library) called the Gerson Miracle. They have bonafide documentation of patients who have survived pancreatic cancer.

[Dark n Stormy Knight]

25. Thanks for the info.

The Gerson Therapy requires a significant financial and lifestyle commitment. It can cost more than $15,000 to start and must be followed for a minimum of 2 years.

Seems unlikely Dad would do this or that it would work if he did. But I'll pass it along.

[fierywoman]

28. I wonder if that includes the price of a stay at their clinic? As far as I can see,

it involves seriously juicing, broths and (uch! ew! ) coffee enemas.
https://www.amazon.com/Gerson-Therapy-Nutritional-Program-Illnesses/dp/1496729323/ref=sr_1_2?crid=2YNGFKEBI9GPX&dchild=1&keywords=gerson+therapy+book&qid=1597955920&sprefix=gerson+%2Caps%2C252&sr=8-2

(The thing I found interesting about the film is that the lady who survived pancreatic cancer joked with her (teenage) daughter so that the enema part didn't sound so bad ...!)

God bless you both whichever path you choose to take.

[No Vested Interest]

26. Hasn't Ruth Bader Ginsburg been treated rather successfully over the years for pancreatic cancer,

among other cancers?

I recall Sen. Jim Bunning of KY saying years ago that she would be gone within months, and, of course, she's still here and Jim Bunning has been gone for years.

That's really an aside, but my point is that Justice Ginsburg has had somewhat successful treatment. If I were in the same circumstances I would want as much information as available about her treatment. I imagine those physicians who work with pancreatic cancer would be aware of that. Not suggesting to go to her hospitals per se, but get knowledge of methods used and find out who uses similar treatment.

Poor Dad. As for his religiosity, as a fellow Catholic and near his age, make available to him all that brings him comfort re faith, so that he at least can come to peace in that area. Do not push hope of miracles, but pray with him as he wishes and see that he has access to the sacraments, especially the Eucharist and at some point, Confession/Penance, if he wishes. My faith gives me daily comfort as a senior who realizes that earthly life may come to an end quickly or not.

Peace be with you, and your Dad and all your family.

[Dark n Stormy Knight]

27. Thank you.

If I knew that about RBG, I'd forgotten. Will look into it.

My sisters have the religious end covered, one in particular who shares his Catholicism. Up until a year or so ago, he was regularly a lector at his church. So, I sure hope they'll be there for him in whatever way he would like. He's kind of a loner, so not really any friends to speak of. Aside from the church, it's just the wife and kids.

[Dark n Stormy Knight]

32. Thank you. And I'm sorry about your mom.

I wish you both as much comfort as is possible in the situation, and the strength to get through rest which must unfortunately be bourne.

[myccrider]

31. Virtual hugs,

lost my dad to pancreatic cancer back in ‘93. By the time they discovered his, though, it had metastasized beyond treatment. They didn’t discover how bad it was until they tried surgery. He went fast after that, so we didn’t get a chance to deal with your questions.

From other friends/family who’ve had incurable cancers, we’ve learned that keeping it as stress free as possible is best for everyone, if the patient agrees.

If your dad wants to fight this with the best medical facility he can access, I’d say that’s his prerogative, of course.

My heart goes out to you and your family.

[Dark n Stormy Knight]

33. I'm so sorry you lost your dad in that way.

Thank you for sharing your experience for the benefit of my family.

We lost my mom's brother, who was just two years older than me, to bone cancer when he was only14. That was an especially hard one for everyone involved.

Since then, we've lost all of my grandparents, which was sad, but less traumatic. The last was nearly 20 years ago. I guess we can be thankful we've lost no one the time since then.