Taking the right care of Great Grandpa
November 29, 2012 10:27 PM Subscribe
We are lucky enough to have a Grandpa who is 84 years old. He just had a consult with his urologist and has elevated PSA and prostate biopsy positive for cancerous cells ( that is the phrase that keeps being repeated) .
So I have no clue what the Gleason scale is. I was not at this appt. so the actual details I have are slim. Follow up with an oncologist about radiation therapy (external beam) appt. was made.
I have affectionately diagnosed him with Old Cat Syndrome, as he is skinny as a rail and cannot gain weight (with a lot of GI distress) and loves to nap in warm environments . Joking aside, he has really started to show his age in he last year and has been having some odd memory lapses, emotional changes, and some (newly pain causing)vertebral fractures. I need advice-- what and where to read to be a good advocate and family member who wants to help in any way especially thinking about the big picture.Would it be helpful to find a reputable Geriatric oncologist in the Seattle area? I have always volunteered to be another set of ears at appts. My Grandparents are very typical in their ability to just let the Dr. write orders and not realizing they are an important part of the healthcare team.
So I have no clue what the Gleason scale is. I was not at this appt. so the actual details I have are slim. Follow up with an oncologist about radiation therapy (external beam) appt. was made.
I have affectionately diagnosed him with Old Cat Syndrome, as he is skinny as a rail and cannot gain weight (with a lot of GI distress) and loves to nap in warm environments . Joking aside, he has really started to show his age in he last year and has been having some odd memory lapses, emotional changes, and some (newly pain causing)vertebral fractures. I need advice-- what and where to read to be a good advocate and family member who wants to help in any way especially thinking about the big picture.Would it be helpful to find a reputable Geriatric oncologist in the Seattle area? I have always volunteered to be another set of ears at appts. My Grandparents are very typical in their ability to just let the Dr. write orders and not realizing they are an important part of the healthcare team.
It's time to start getting prepared. I am seconding naplesyellow.
posted by parmanparman at 11:12 PM on November 29, 2012 [1 favorite]
posted by parmanparman at 11:12 PM on November 29, 2012 [1 favorite]
Speaking as a granddaughter of a 91 year old functionally independent grandparent with recent heathcare challenges and as a nurse who works with critically ill older adults, my best advice is to have a discussion with your grandfather what he might want to do with this newly (suspected) prostate CA diagnosis.
I say this because in light of the picture you've painted of your grandfather's chronic conditions as well as newly acute pain, the phrase you will hear (and what I and my colleagues often advocate for) is quality of life. If a man lives to be the age of your grandfather the chances of him NOT being diagnosed with prostate CA are slim.
My concern would you be the other situations you mention: GI distress, vertebral/spinal pain, failure to thrive (inability to gain weight, etc.). These conditions are not uncommon in older adults, and some of these conditions can improve with appropriate treatments (not all of which are pharmacological) however it needs to be said that every individual can choose how aggressively the would like to be to maintain the life that they live now. Will their life get better if certain interventions are added? Is is possible that life may get worse, meaning more uncomfortable or adverse side effects as medications are added to mitigate chronic conditions? This could include chemotherapy/radiation, etc.
As long as his physicians provide him with all of the information possible about treatment routes versus doing nothing, it truly is his choice on how he would like to proceed.
posted by Asherah at 11:30 PM on November 29, 2012 [11 favorites]
I say this because in light of the picture you've painted of your grandfather's chronic conditions as well as newly acute pain, the phrase you will hear (and what I and my colleagues often advocate for) is quality of life. If a man lives to be the age of your grandfather the chances of him NOT being diagnosed with prostate CA are slim.
My concern would you be the other situations you mention: GI distress, vertebral/spinal pain, failure to thrive (inability to gain weight, etc.). These conditions are not uncommon in older adults, and some of these conditions can improve with appropriate treatments (not all of which are pharmacological) however it needs to be said that every individual can choose how aggressively the would like to be to maintain the life that they live now. Will their life get better if certain interventions are added? Is is possible that life may get worse, meaning more uncomfortable or adverse side effects as medications are added to mitigate chronic conditions? This could include chemotherapy/radiation, etc.
As long as his physicians provide him with all of the information possible about treatment routes versus doing nothing, it truly is his choice on how he would like to proceed.
posted by Asherah at 11:30 PM on November 29, 2012 [11 favorites]
Sorry, posting from a phone. Others seem to have already offered very helpful advice. If you feel like you want more information, these are some patient-centric links from uptodate 1 and 2. If you search, there are more articles, but they're aimed more at healthcare practitioners.
posted by palionex at 12:02 AM on November 30, 2012
posted by palionex at 12:02 AM on November 30, 2012
My grandfather had prostate cancer for the last ten years of his life. No treatment, and he died of something else entirely. I second/third/fourth the others who say prepare for the possibility that his healthcare providers may only want to treat symptoms as they arise, rather than doing anything aggressive about the underlying cause.
posted by lollusc at 12:50 AM on November 30, 2012 [8 favorites]
posted by lollusc at 12:50 AM on November 30, 2012 [8 favorites]
Same experience with my grandfather as lollusc. If the cancer will likely move slower than the other parts of his body breaking down over time -- and prostate cancer in older men generally seems to -- then it's not worth the extra physical and mental stress of treating it.
posted by olinerd at 1:58 AM on November 30, 2012 [2 favorites]
posted by olinerd at 1:58 AM on November 30, 2012 [2 favorites]
The above answers reflect what I have heard from doctors as well. It does run counter to normal expectations: "But that's not how they do it on TV!" But it is a very common recommendation among doctors treating older men.
posted by megatherium at 3:54 AM on November 30, 2012
posted by megatherium at 3:54 AM on November 30, 2012
My father died of prostate cancer at the age of 79, but that was mainly because he had started having trouble pissing about twenty years earlier while the rest of his health was still excellent, and had decided to "manage" his "prostate situation" with "his own methods" i.e. he indulged in woo-woo and wishful thinking instead of seeking any form of evidence-based treatment.
His oncologist told me that Dad's case was unusual in that prostate cancer is actually really common in old men but is rarely the cause of their death; something else will generally break down first. Dad's cancer didn't kill him until his prostate was about the size of a football.
So I'm with Asherah. The prostate cancer is but one of many things currently going wrong for your grandfather, so rather than putting your focus on the prostate cancer, I think you'd be better off making sure that he understands his condition and the likely outcomes of the options available to him so that he can achieve the best quality of life he can get.
posted by flabdablet at 4:47 AM on November 30, 2012 [1 favorite]
His oncologist told me that Dad's case was unusual in that prostate cancer is actually really common in old men but is rarely the cause of their death; something else will generally break down first. Dad's cancer didn't kill him until his prostate was about the size of a football.
So I'm with Asherah. The prostate cancer is but one of many things currently going wrong for your grandfather, so rather than putting your focus on the prostate cancer, I think you'd be better off making sure that he understands his condition and the likely outcomes of the options available to him so that he can achieve the best quality of life he can get.
posted by flabdablet at 4:47 AM on November 30, 2012 [1 favorite]
Best answer: Speaking as a prostate cancer survivor, so far: By that age, most men have detectable prostate cancer. The thing you need to understand about prostate cancer is that nearly always, it is very slow progressing cancer and takes a very long time to kill you. So as others have said, the odds are that something else will kill him first. Also this means you have the luxury of time to decide on treatments. Don't rush into anything. Do research, get second opinions. Understand all the numbers, Gleason scores, etc. Besides oncologists get a neurological evaluation of the memory lapses.
posted by beagle at 6:19 AM on November 30, 2012 [2 favorites]
posted by beagle at 6:19 AM on November 30, 2012 [2 favorites]
Best answer: I think it was irresponsible of his doctor to even do this test since, as others have pointed out, almost all men his age have prostate cancer and (broadly speaking) there is minimal benefit to treating it before symptoms appear, so really mostly what the PSA does is scare people.
But now that the cat's out of the bag, I think the best thing to do is to make sure your grandfather understands that this likely is a slow-growing cancer (barring evidence to the contrary from his doctors) and that he may not need to get treatment for it if that treatment will seriously compromise his quality of life.
There is a very good chance that his oncologist(s) will recommend more aggressive treatment than really makes sense for your grandfather - remember, these guys are onocologists! they hate cancer the most! - so make sure he also consults with his regular physician (PCP, GP, whatever).
posted by mskyle at 6:31 AM on November 30, 2012 [3 favorites]
But now that the cat's out of the bag, I think the best thing to do is to make sure your grandfather understands that this likely is a slow-growing cancer (barring evidence to the contrary from his doctors) and that he may not need to get treatment for it if that treatment will seriously compromise his quality of life.
There is a very good chance that his oncologist(s) will recommend more aggressive treatment than really makes sense for your grandfather - remember, these guys are onocologists! they hate cancer the most! - so make sure he also consults with his regular physician (PCP, GP, whatever).
posted by mskyle at 6:31 AM on November 30, 2012 [3 favorites]
Best answer: Hi. Your grandpa does have a diagnosis of prostate cancer courtesy of the positive biopsies. Elevated PSA is not diagnostic -- only indicative; but biopsy/histology of malignant prostate cells is diagnostic, and that's where the Gleason scale comes in. The scale will give you an indication of how aggressive the malignant cells are and my instinct is your grandpa could be at least midway along the scale to be attracting appointments with radiologists.
It's true, the majority of prostatic cancer in senior men is sluggish and slow growing, it depends entirely on the cells found. (Again, some forms are more aggressive than others.) If it were my grandpa I'd be wanting to see the histology report -- the cell studies -- of his biopsies. How abnormal/aggressive are these malignant cells your dealing with? What was the Gleason assigned?
The more abnormal the cells are, the more likely they are to spread to bone tissue. Bone is typically the next port of call for malignant prostate cells on the move (via lymph or blood). Bone cancer is painful, mainly, and can compromise mobility, and lead to fractures.
Spread to bone can be to anywhere in the skeleton but is most commonly to the lower vertebrae, the pelvis, and the long bone in the upper legs.
OK. I'd want my grandpa to have a (non-invasive) bone scan for a few of reasons. (1) He's having "(newly pain causing) vertebral fractures". (2) Pain management: bone cancer won't kill your grandpa, but unrelenting pain and discomfort will sure as heck sit him down, debilitated and compromised ... even addling his thoughts. (3) I'd be wanting to know if he has spinal or lower limb long bone involvement, already, implying a need to make safe his living environment and maybe provide a walking stick or frame to take some of the stress out of ambulation. (Bathrooms become hazardous, stairs ... does he still drive?)
It's your grandpa's decision to pursue treatment or not but the more you understandingly know the better off he will be. Where pain management is concerned it comes with its own predicaments not least constipation ... basic nursing advice for people on major analgesia is something you need to read over.
The more you know, the more assistance you will be to your grandparents. All the best!
posted by de at 6:38 AM on November 30, 2012 [1 favorite]
It's true, the majority of prostatic cancer in senior men is sluggish and slow growing, it depends entirely on the cells found. (Again, some forms are more aggressive than others.) If it were my grandpa I'd be wanting to see the histology report -- the cell studies -- of his biopsies. How abnormal/aggressive are these malignant cells your dealing with? What was the Gleason assigned?
The more abnormal the cells are, the more likely they are to spread to bone tissue. Bone is typically the next port of call for malignant prostate cells on the move (via lymph or blood). Bone cancer is painful, mainly, and can compromise mobility, and lead to fractures.
Spread to bone can be to anywhere in the skeleton but is most commonly to the lower vertebrae, the pelvis, and the long bone in the upper legs.
OK. I'd want my grandpa to have a (non-invasive) bone scan for a few of reasons. (1) He's having "(newly pain causing) vertebral fractures". (2) Pain management: bone cancer won't kill your grandpa, but unrelenting pain and discomfort will sure as heck sit him down, debilitated and compromised ... even addling his thoughts. (3) I'd be wanting to know if he has spinal or lower limb long bone involvement, already, implying a need to make safe his living environment and maybe provide a walking stick or frame to take some of the stress out of ambulation. (Bathrooms become hazardous, stairs ... does he still drive?)
It's your grandpa's decision to pursue treatment or not but the more you understandingly know the better off he will be. Where pain management is concerned it comes with its own predicaments not least constipation ... basic nursing advice for people on major analgesia is something you need to read over.
The more you know, the more assistance you will be to your grandparents. All the best!
posted by de at 6:38 AM on November 30, 2012 [1 favorite]
I am not your grandfather's doctor.
The only thing I have to add to this conversation is that anyone who thinks it is "unfortunate" that doctors start talking about palliative care to frail elderly people with multiple medical problems has a misunderstanding of what palliative care means. Palliative care means making sure a patient who has life-threatening medical problems is getting care that will make the time they have the best it can be - it is about the 'goals of care', not necessarily about living as long as you possibly can, no matter how much suffering it takes to get there (unless that is your goal, which for some people, it is...)
I recommend asking your great grandfather's doctor what the purpose of the radiation therapy is (and any other treatment they recommend) - my guess is that it is palliative treatment and not meant to be curative. Find out why they're doing it and what the odds are that it will help him. Find out the risks and the benefits. Once you know his prognosis and what they are suggesting for treatment based on that prognosis, you are in a position to advocate for what you think he would want.
when I'm 80-something and I'm in chronic pain, getting confused, and cannot gain weight/am frail, please do not aggressively treat me with cancer treatments that would make me feel even more miserable for the remaining days I have on this earth. That's just how I feel. Your great grandfather may feel differently...
on preview, re: de's response, a bone scan is not necessarily to achieve good pain management and to know what your grandfather's physical limitations are. If he has a good doctor they will be all over pain control based on his clinical symptoms, not based on a bone scan, and they will use a physical/occupational therapy evaluation to determine if he needs additional assistance in the home.
posted by treehorn+bunny at 6:44 AM on November 30, 2012 [9 favorites]
The only thing I have to add to this conversation is that anyone who thinks it is "unfortunate" that doctors start talking about palliative care to frail elderly people with multiple medical problems has a misunderstanding of what palliative care means. Palliative care means making sure a patient who has life-threatening medical problems is getting care that will make the time they have the best it can be - it is about the 'goals of care', not necessarily about living as long as you possibly can, no matter how much suffering it takes to get there (unless that is your goal, which for some people, it is...)
I recommend asking your great grandfather's doctor what the purpose of the radiation therapy is (and any other treatment they recommend) - my guess is that it is palliative treatment and not meant to be curative. Find out why they're doing it and what the odds are that it will help him. Find out the risks and the benefits. Once you know his prognosis and what they are suggesting for treatment based on that prognosis, you are in a position to advocate for what you think he would want.
when I'm 80-something and I'm in chronic pain, getting confused, and cannot gain weight/am frail, please do not aggressively treat me with cancer treatments that would make me feel even more miserable for the remaining days I have on this earth. That's just how I feel. Your great grandfather may feel differently...
on preview, re: de's response, a bone scan is not necessarily to achieve good pain management and to know what your grandfather's physical limitations are. If he has a good doctor they will be all over pain control based on his clinical symptoms, not based on a bone scan, and they will use a physical/occupational therapy evaluation to determine if he needs additional assistance in the home.
posted by treehorn+bunny at 6:44 AM on November 30, 2012 [9 favorites]
sorry that should read "a bone scan is not necessary to..."
posted by treehorn+bunny at 6:51 AM on November 30, 2012
posted by treehorn+bunny at 6:51 AM on November 30, 2012
Best answer: A lot of folks are framing this as if there's something sad or bad about letting prostate cancer be. But your grandfather is 84. It's time to think honestly about everyone's goals. Is his main wish to live for another 15 years? Or would he be ready to go, if this was particularly invasive or fast moving?
Cancer treatment is not easy and it's not pleasant. Old people heal slower. While we want to imagine our loved ones dying peacefully in their sleep, everyone has to die of something, and perhaps prostate cancer will be the way your grandfather transitions out of this life. You can't escape death forever.
What I'm suggesting is trying to look at this scary situation from some different perspectives. If this was my grandfather, I'd strongly suggest he avoid any kind of treatment for this that was not palliative in nature.
posted by latkes at 7:31 AM on November 30, 2012 [1 favorite]
Cancer treatment is not easy and it's not pleasant. Old people heal slower. While we want to imagine our loved ones dying peacefully in their sleep, everyone has to die of something, and perhaps prostate cancer will be the way your grandfather transitions out of this life. You can't escape death forever.
What I'm suggesting is trying to look at this scary situation from some different perspectives. If this was my grandfather, I'd strongly suggest he avoid any kind of treatment for this that was not palliative in nature.
posted by latkes at 7:31 AM on November 30, 2012 [1 favorite]
IANAD...
Not to put too fine a point on it, but to put another spin on the above: hospitals and providers make a lot of money on diagnostics and cancer treatment. I can tell you, from inside that industry, that this is an area everyone is investing heavily in these days. The idea is to get a return on that investment. There's often a tendency to over-treat cancers, and the fact that he had a PSA might indicate that that's how his providers are biased.
You may need to be very explicit about your desires here. The man is 84 and is feelin' OK. The goal should probably be to keep him feelin' OK as long as possible, then let him go as quietly as possible. That might be a year or it might be 15. Who knows.
What is probably known is that this is NOT how things will go if you've got a particularly aggressive team of oncologists who aren't being entirely clear about what the range of outcomes are. People are misled all the damn time by doctors offering false hopes.
Cancer, certainly at that age, is more akin to a chronic disease to be managed rather than something you seek to "cure". When people are allowed to be a little self-deluded they often elect to do some things that can rapidly spiral out of control.
posted by pjaust at 12:46 PM on November 30, 2012 [1 favorite]
Not to put too fine a point on it, but to put another spin on the above: hospitals and providers make a lot of money on diagnostics and cancer treatment. I can tell you, from inside that industry, that this is an area everyone is investing heavily in these days. The idea is to get a return on that investment. There's often a tendency to over-treat cancers, and the fact that he had a PSA might indicate that that's how his providers are biased.
You may need to be very explicit about your desires here. The man is 84 and is feelin' OK. The goal should probably be to keep him feelin' OK as long as possible, then let him go as quietly as possible. That might be a year or it might be 15. Who knows.
What is probably known is that this is NOT how things will go if you've got a particularly aggressive team of oncologists who aren't being entirely clear about what the range of outcomes are. People are misled all the damn time by doctors offering false hopes.
Cancer, certainly at that age, is more akin to a chronic disease to be managed rather than something you seek to "cure". When people are allowed to be a little self-deluded they often elect to do some things that can rapidly spiral out of control.
posted by pjaust at 12:46 PM on November 30, 2012 [1 favorite]
Response by poster: Thank You for all of the good advice and reassuring me that it really is ok to think quality of life is extremely important at all ages. Now it will be not so much fun to slow down the portion of the family who really seem to love a medical drama IRL.
posted by slothhog at 3:23 PM on November 30, 2012
posted by slothhog at 3:23 PM on November 30, 2012
For the rest of your family, repeating the mantra (and sending them the relevant literature, easily accessible on PubMed) that most men your grandfather's age die WITH prostate cancer, not OF prostate cancer, as others have mentioned, may be helpful. My dad went through prostate cancer treatment in his 50s for an aggressive cancer, and the treatment process was deeply unpleasant. For a slow-moving cancer that can take many years, if not decades, to progress, the treatment is invariably worse than the cure.
posted by booknerd at 6:30 PM on November 30, 2012
posted by booknerd at 6:30 PM on November 30, 2012
This thread is closed to new comments.
posted by naplesyellow at 10:41 PM on November 29, 2012 [3 favorites]