Metastatic Pancreatic Cancer - Stage IV - is there any hope?

[Ting Tang]

I've posted about my mother-in-law before.  Several years ago, she had breast cancer.  She had surgery and radiation.  In Summer 2020, she was diagnosed with Pancreatic Cancer.  She had chemotherapy and the Whipple surgery in January 2021.  Her CA numbers in a blood test continued to rise, and her scans revealed more.  She had a biopsy, and it has spread to her liver.  I am not sure if they consider any kind of spread Stage IV?

They told her that surgery and radiation were out of the question.  Chemo may be the plan.  

Pancreatic cancer doesn't have a good prognosis, and we knew that.  Has anyone had this specific experience with a relative?  She is in the mid-latter part of her 70s now.  She does seem to look much better than her initial diagnosis in 2020, but maybe that doesn't mean much.  She lost a brother last year to this same disease, and they were diagnosed about a week apart.

I'm worried we live nextdoor and what our kids may experience if things get really bad, especially if I am going to have a part in any transportation/care.  I've honestly detached myself a bit from the worry I had as to my responsibility because I think my husband's siblings need to step up, even though they live 1.5-2 hours away.  It doesn't mean I do not care about her or love her, no.

I'm also worried about my husband's risk factor. He doesn't go to the doctor, but I think he needs to go and get some kind of referral so he can be screened/monitored.  My husband is 45.  I hope that isn't some kind of luxury within our medical care system.

I'm reading some bad stuff from support groups.  Not only is it horrible, but our medical care system sucks in the regard some people are losing everything because someone got cancer.  

[itsheresomewhere]

Something to ask- how many on her side have had cancer and what types? There are a couple of genetic links for certain cancers. Unfortunately, most doctors don’t test for those.  DH has one and the arguing I had to do for testing was ridiculous. 

[Ottakee]

If you are in the US I would call hospice ASAP.   I did that the day after my MIL diagnosis and it was a huge help.   Sadly she passed away 5 years ago today, just 7 months after diagnosis but she lived a pain free and good life until the last week when she was bedridden.

hospice was very helpful with meds, nurses, equipment, etc

[Mrs Tiggywinkle Again]

Just now, Ottakee said:

If you are in the US I would call hospice ASAP.   I did that the day after my MIL diagnosis and it was a huge help.   Sadly she passed away 5 years ago today, just 7 months after diagnosis but she lived a pain free and good life until the last week when she was bedridden.

hospice was very helpful with meds, nurses, equipment, etc

It sounds like her MIL is still pursuing treatment options.  If she is not pursuing further treatment or testing, I’d immediately call hospice as well.

But if she is pursuing treatment hospice won’t accept her onto their service. 

[TexasProud]

1 minute ago, Mrs Tiggywinkle Again said:

It sounds like her MIL is still pursuing treatment options.  If she is not pursuing further treatment or testing, I’d immediately call hospice as well.

But if she is pursuing treatment hospice won’t accept her onto their service. 

This.

[happi duck]

Many (hugs)

I lost both my sisters to PC.  It's a monster.

Your mil has already survived a long time for PC.  Has she been tested for a mutation so her children know whether to be tested?  BC and PC in the same person usually point to BRCA1(?) mutation.

Unfortunately, PC doesn't have simple screenings like other cancers might.

Ime, just jump in and help, spend time etc.  Don't assume you're in for a long haul.  Perhaps it will be long but just in case jump in.

Many (hugs)

[Pawz4me]

45 minutes ago, Ting Tang said:

 

I'm also worried about my husband's risk factor. He doesn't go to the doctor, but I think he needs to go and get some kind of referral so he can be screened/monitored.  My husband is 45.  I hope that isn't some kind of luxury within our medical care system.

 

Unfortunately I think it is mostly a luxury, especially when what triggers the desire for screening is a diagnosis in an older person. It's considered normal for an older person to get cancer. For the type of cancer my husband has genetic testing is only done for heritable mutations if the patient is 45 or younger when diagnosed.

[Carol in Cal.]

PC has several forms, some treatable and some pretty much fatal in 3 months, from what I have heard.

Since she has lived so long since the original diagnosis, this must be a treatable kind.  I don’t know whether that means that you live with it as a chronic condition, or that you might get cured.  I think it would be a good idea to make a list of your questions and accompany her on an oncologist visit to get a clear view of the possible futures.

[Innisfree]

1 hour ago, Ting Tang said:

I'm worried we live nextdoor and what our kids may experience if things get really bad, especially if I am going to have a part in any transportation/care. 

My kids had a front-row seat to my parents’ final, long-term, serious illnesses; the older one was twelve when their last grandparent died.

No one would deny that’s a hard experience, but I don’t regret their being around to see their grandparents, even when they were quite ill. Of necessity, the kids spent a lot of time in waiting rooms and hospitals. They became friendly with caregivers at home. They saw dementia and all sorts of physical frailty. But— this was the only time my kids were going to have with their grandparents. They remember them with love. And they seem to have absorbed the lesson that we rally round family when they’re sick.

So, don’t feel that your kids will be scarred by watching their grandmother‘s decline. Serious illness is frightening, death is frightening, but in avoiding illness and death, we lose a lot. Other than intimate personal care and actual deathbeds, my kids pretty much saw it all, and they don’t seem to have been harmed.

Along the way, your kids could be a bright spot in their grandmother’s life.

[Ting Tang]

Thank you everyone for your thoughts and stories!  Yes, she is still seeking treatment options, so hospice hasn't been discussed.  Honestly, she looks great and is getting around so well.  I hoped it might be an earlier diagnosis of the spread but am not sure what the stage 4 means exactly.  Hoping to have some questions answered soon.   Both she and her sibling were definitely older with their diagnoses.  For some reason, she put off the genetic testing.  It sounds like it will be an ordeal for my husband to get screened, but I already have it in my mind I might need to be prepared, even though she is older.  I think they still want her to be tested to determine potential treatment options.  I just feels like things move incredibly slow, 2 or 3 weeks between each little test, scan or procedure.  

[Halftime Hope]

21 minutes ago, Ting Tang said:

Thank you everyone for your thoughts and stories!  Yes, she is still seeking treatment options, so hospice hasn't been discussed.  Honestly, she looks great and is getting around so well.  I hoped it might be an earlier diagnosis of the spread but am not sure what the stage 4 means exactly.  Hoping to have some questions answered soon.   Both she and her sibling were definitely older with their diagnoses.  For some reason, she put off the genetic testing.  It sounds like it will be an ordeal for my husband to get screened, but I already have it in my mind I might need to be prepared, even though she is older.  I think they still want her to be tested to determine potential treatment options.  I just feels like things move incredibly slow, 2 or 3 weeks between each little test, scan or procedure.  

Yes, it is essential for your husband to get genetic screening for the sake of both himself and of offspring.

We had to pay for it out of pocket (months of small bills) but the reasons for testing were there.  It was wonderful to have an 'all clear' once the test results were in, and it affected the course of treatment for one of us. (If it had not been 'all clear' the treatment choices would have been much different.)

 

 

 

 

[Pawz4me]

Stage 4 means there is some degree of spread. Often it’s to a “distant” site, but I believe how it’s defined varies somewhat depending on the type of cancer. You should be able to find how it’s defined for PC by Googling. Also, the grade  matters. Cancers are graded from 1 to 4, with 1 generally being less aggressive and 4 being more aggressive. And sometimes grades have sublevels. A stage 4 grade 1 cancer will generally be more responsive to treatment than a stage 4 grade 4 cancer. 

[BusyMom5]

39 minutes ago, Ting Tang said:

Thank you everyone for your thoughts and stories!  Yes, she is still seeking treatment options, so hospice hasn't been discussed.  Honestly, she looks great and is getting around so well.  I hoped it might be an earlier diagnosis of the spread but am not sure what the stage 4 means exactly.  Hoping to have some questions answered soon.   Both she and her sibling were definitely older with their diagnoses.  For some reason, she put off the genetic testing.  It sounds like it will be an ordeal for my husband to get screened, but I already have it in my mind I might need to be prepared, even though she is older.  I think they still want her to be tested to determine potential treatment options.  I just feels like things move incredibly slow, 2 or 3 weeks between each little test, scan or procedure.  

I am so feeling this right now!  We keep waiting to see what our next 6 months will be like, but every tiny step takes weeks to get approved, then get the test, then hear the results.   We know our local hospital system will need to refer to a specialist,  but they seem to want to keep running tests before referring.   I'm over here like "START THE PAPERWORK " because I know that it takes soooo long.  

Also, the system we have of insurance approval for tests and referrals just adds to the wait.  Does anyone know how we get around this?  

Ting Tang, I hope you get answers soon and that your family finds peace throughout this ordeal.  

[Eos]

Hugs @Ting Tangthis is a hard row to hoe.  I have two good friends who've lost their husbands to pancreatic cancer.  One lived about 3 years from diagnosis, the other about 6 months.  Neither was in much pain, both had excellent community support for staying at home but neither had "official" hospice.  One left an 8 year old, who as an adult has loving memories of climbing up and sitting in his dad's lap, literally as he was dying. 

Courage and peace to you.  Do you have a community of friends who can be calm support to you and her?

[Melissa in Australia]

Huge hugs

[theelfqueen]

My friend was diagnosed with stage IV pancreatic cancer in November 2021. I went to Disneyland with him two weeks ago. Does that mean it's done and gone? No. He is still very much in treatment. But he's still with us. 

[Ting Tang]

And three hours ago I learned my brother has a very rare firm of cancer— his sweat glands. 😞 he’s going to lose a finger and check to see if it has spread. He’s 43. 

[itsheresomewhere]

9 minutes ago, Ting Tang said:

And three hours ago I learned my brother has a very rare firm of cancer— his sweat glands. 😞 he’s going to lose a finger and check to see if it has spread. He’s 43. 

One of my relatives had that years ago.  He survived 20+ years after surgery and treatment until he developed a rare prostate cancer not related to the first cancer.  
 

I hope your brother has as good of an outcome.  

Edited April 6, 2023 by itsheresomewhere

[J-rap]

I'm sorry for you all about the pancreatic cancer.  I do know one person who survived it, but perhaps it hadn't yet spread anywhere.  It has been over 10 years now and it has not returned since treatment.

As far as genetic testing.  My mother had breast cancer when she was quite young -- 44.  Her mother had it too, as did her great-grandmother.  So I had the genetic testing around 8 years ago.  It was negative, but for some reason, I was told that they couldn't really confirm it unless they could also test someone in my family who actually had the cancer.  My mother was in her 80's by then, but insurance covered her to do the genetic testing, and to her surprise, it was also negative.  So then they could confirm that mine truly was negative.  I still don't really understand why they had to test her to confirm it.  

Obviously some genetic thing has been going on, but whatever it is, I guess it hasn't been discovered yet.

[kathyl]

On 4/5/2023 at 12:12 PM, Ting Tang said:

I've posted about my mother-in-law before.  Several years ago, she had breast cancer.  She had surgery and radiation.  In Summer 2020, she was diagnosed with Pancreatic Cancer.  She had chemotherapy and the Whipple surgery in January 2021.  Her CA numbers in a blood test continued to rise, and her scans revealed more.  She had a biopsy, and it has spread to her liver.  I am not sure if they consider any kind of spread Stage IV?

They told her that surgery and radiation were out of the question.  Chemo may be the plan.  

Pancreatic cancer doesn't have a good prognosis, and we knew that.  Has anyone had this specific experience with a relative?  She is in the mid-latter part of her 70s now.  She does seem to look much better than her initial diagnosis in 2020, but maybe that doesn't mean much.  She lost a brother last year to this same disease, and they were diagnosed about a week apart.

I'm worried we live nextdoor and what our kids may experience if things get really bad, especially if I am going to have a part in any transportation/care.  I've honestly detached myself a bit from the worry I had as to my responsibility because I think my husband's siblings need to step up, even though they live 1.5-2 hours away.  It doesn't mean I do not care about her or love her, no.

I'm also worried about my husband's risk factor. He doesn't go to the doctor, but I think he needs to go and get some kind of referral so he can be screened/monitored.  My husband is 45.  I hope that isn't some kind of luxury within our medical care system.

I'm reading some bad stuff from support groups.  Not only is it horrible, but our medical care system sucks in the regard some people are losing everything because someone got cancer.  

One of my grandmothers died from pancreatic cancer.  But this was back in the 80's and she came from a generation who avoided doctors like the plague.  And she turned down any treatments.  She was in her 70's and I think it was only a few months from discovery to death. 

I was in college at the time and she was over 900 miles away, but I remember that her grown kids hired a woman to stay with her and help her even though there were plenty of relatives nearby.  That seemed to work well.  Relatives came and went but the woman lived there and took care of her.

Yeah, I was asking my dh the other day when he was going to go get his (1st!) colonoscopy.  He's 66yo.  He balked so I pointed out to him that one of the things I've noticed over the years in seniors who seem to stay healthier is that they don't avoid doctors.  They use them - get screening tests done periodically, have checkups, keep up generally with what's going on in the medical world where seniors are concerned, etc.  Along with all the other things, of course - exercise, healthy eating, talk to people (besides me), and so on. 

I've also offered to help him find good doctors, but he never seems to be interested.  So I leave him alone because in the end he's going to have to do his health and I'll have to do mine.  I put the information out there for him when I hear things, but what he does with it is up to him.

Edited April 7, 2023 by kathyl