My dad (74) was diagnosed with metastatic prostate cancer in September 2019 after numerous trips to the ER. The hospital recommended hospice last year but we refused and wanted him to see an oncologist first. He saw an oncologist and was put on Xtandi and Lupron right away. He was able to walk again and gained back some weight ( lost over 50 pounds). His PSA dropped to 0.6 (detected at 420) and his bone mets didn’t light up anymore ( bone mets all over the body). This past July - he went to the ER for C. Diff and they found a 14 cm mass in his lower abdomen. The oncologist knew about the hospital stay and told us there’s no longer anymore treatment for my dad and to place him on hospice. My dad is taking morphine now and is not alert anymore - sleeping most of the days. I just want to know what else should I ask the oncologist or doctors? Should I have asked about the Gleason score? Are there any other treatments or options we could have seeked? The oncologist just kept it really short - apologized and said he only has a few weeks left. Chemo/radiation was not recommended because of his age. I don’t get how his PSA decreased dramatically and his bone mets didn’t light up - yet he’s dying now. I feel like there’s more we could have done...what more could we have asked? Who to ask? Maybe I’m not understating how this all works and there really isn’t anymore treatment? The oncologist just kept saying the past year that my dad was responding well to treatment and that he wasn’t going to die. I am so so sad seeing my dad like this. Someone please help...
I don’t know where to go, who to ask ... - Advanced Prostate...
I don’t know where to go, who to ask and what to do in regards to my dad who is on hospice w/ metastatic prostate cancer...
Sorry to hear what you and your Dad are going thru. I wish God give you strength to deal with this and you have a positive outcome.
With PSA 0.6 and Bone mets clear..I do not believe he is dying because of Prostate cancer.
It does not make sense to me.
We are missing some information here. Is he having serious organ mets (visceral mets) ? Does he have lytic type of bone lesions ? What the heck is that 14 cm damn mass in his abdomen? Is it malignant ? What are his blood cell numbers ?Doctor needs to explain to the Son of patient ,that is the job of the Doctor.
I suggest you stay calm and ask the nurses that you would like to have a phone meeting or face to face meeting with Doctor to understand his condition. Sometimes, Nurses are very receptive and kind and provide you detailed info. Wish you the best.
Thank you so much for the reply. From what I understand - the oncologist said the mass in his lower abdomen is neoplastic. He is suspecting small cell but we can’t get a biopsy because my dad is extremly weak and bed ridden. I will call the NP that cared for my dad on Monday and will ask her about visceral mets, lytic bone mets and blood cell numbers. The last phone call I had with her she just stated that his cancer is aggressive and the tumor is growing at an extreme rate.
If his cancer is a small cell variant his PSA may drop because that type of cancer does not register increasing PSA. There are treatments though they are either Carboplatin and other chemos or if he has a genetic mutation that fits the profile clinical trials are available. If possible get a second opinion from one of the main cancer centers around the country. Not sure how to advise. What does your dad want?
I agree with Learnall. The drs clearly did not relay all the info to you.
How should I go about contacting my dad's oncologist tomorrow? Would you be able to help me with some questions I should ask him.
Hallo
You mention a telephone call in which the NP told you that the cancer is aggressive and growing at a fast rate. I would start with that information when I talk to the oncologist. And if he still insist there are no more chemo options, you can in a polite way tell him that he must allow you to seek a second opinion. He will not be angry.
And like the rest here I don't think the chemo options are depleted. I am quite sure there will be an oncologist that is willing to help.
Hello,
Chemo /radiation was not recommended because of his age? Your dad is only 74. I would get a second opinion. Unless your dad has small cell and/or neuroendocrine PCa which can be nasty, there are options. The vast majority of people who have prostate cancer get adenocarcinoma. That can be treated. If your Dad's cancer emits PSMA, consider Lutetium. It will kill bone cancer and visceral cancer. Lots of folks have written about Lutetium on this forum. Do a search. Hope that helps!
My husband will be 72 in a couple of weeks, and in the last 2 months, he has had radiation and 2 rounds of chemo so far. He was diagnosed about the same time as your dad and had a PSA of 3200. Never once has his age come up as an issue. I don’t understand this!
Thank you so much the reply. The oncologist is suspecting small cell but we can’t get a biopsy because my dad is weak and bedridden. Should I ask his oncologist about Lutetium? Is it usual for oncologists to be this dismissive when it’s this advanced? What does PSMA mean?
Just suspecting small cell, Neuroendocrine variant is not enough. It needs to be established with certainty. There are different kind of treatments available for such variants.
His Doctor needs to order three blood tests ASAP ...Chromogranin A test, Neuron Specific Enolase test and Lactate Dehydrogenase test.
Then, He should have a CT scan urgently to see if he has bone destroying LYTIC bone lesions. Putting all these things together can give us some good idea as what really is going on. If he can not have biopsy..that's OK as the above testing can tell a lot.
Hello,
PSMA stands for Prostate Specific Membrane Antigen. It can be detected with a Positron Emission Tomography scan more commonly called a PET scan. It is my experience that it is not usual for medical oncologists to be dismissive. My MO is a sweetheart. We (my wife and I) are very fortunate to have him.
Is it too late because he’s on hospice? The oncologist is so short with me and just keeps telling me he’s too weak...
Once one is on hospice, one cannot have therapies to extend life. The oncologist's job is basically done.
The large mass in his abdomen in spite of the best hormone therapy shows that his cancer has become resistant to those therapies. Chemo is NOT automatically a problem for his age, but there might be other problems (e.g., liver, kidneys, or blood) that prevent him from using it. You can ask for a copy of his blood work. If he is able to use it, it may help with the pain.
Are you sure he said "neoplastic" and not "anaplastic"? Neoplastic just means it's cancer. Anaplastic means it is either an undifferentiated type or a neuroendocrine type. Either has a poor prognosis.
Gleason score does not matter at this stage.
He is weak the whole right side of his body - from a stroke 8 years ago. Maybe that’s why chemo wasn’t recommended? The mass grew 4cm in just a week.
Will an FDG PET scan will show Neuroendocrine prostate cancer?
yes, but it won't differentiate NE from other kinds of cancer.
If Neuro-endocrine PC is suspected then a another PET scan can be done in addition to a PSMA PET scan. It's as FDG PET scan. The combination of the two scans will give a lot of useful information for further treatment.
Is it possible that the mass is operable? removeable? Just a thought.
For something like this, is it permissible to ASAP send copies of your Dad's chart to someone specializing in prostate cancer at a Cancer Center of Excellence? If nothing else, perhaps you can get a referral to another local Doc whose expertise is acknowledged by someone at the Center of Excellence? Just a thought...not sure if a good idea. I thingk difficult for the son to step in here and start grilling the current MO and asking for this and that?
Would I ask for my dad’s chart from the oncologist or the hospital? We live in Northern California - where would the closest Cancer Center of Excellence be? I’m his oldest daughter and took him to all his doctors’ visits - but the oncologist always keep it shorts with me and says that dad is too weak.
UCLA is a no brainer.
It is pretty conventional to seek out second opinions.
Not sure...call hospital and ask. yes, UCLA, and closer to you, San Francisco...though everything can be done electronically and by phone with another cooperative Doc. Shouldn't be surprised if 2nd opinion concurs with your current MO.....but worth the effort MHO. Hope someone here can give you a specific Doc referral..not just an institution!
You can go to UCSF in San Francisco. Dr Aggarwal is a top notch prostate cancer oncologist and also specializes in endocrine cancer. With just a blood test for Cromogranin A and NSE (neuron specific emulase) you'll find out if it's the aggressive type. He is great to talk to, kind and exlains the whole treatment options.
Don't give up, sending love to you!
Excellent post
The guys are correct...there are quite a few hospitals in the country that specialize in prostate cancer...depending on where you live, there may be one relatively close. If you can give us an idea what area or region of the country you live in...one of us could probably steer you to a good doctor.
IMHO, age isn't the issue, but overall health is. If it is neuroendocrine cancer, the standard treatment would be carboplatin+etoposide chemotherapy, and that is very harsh (I say that from personal experience). It sounds like the doctors are really saying your dad is too weak for a biopsy and chemotherapy. If his blood counts are already low, such harsh treatments could kill him quicker than the cancer will.
Here's an alternate idea: Ask about a circulating tumor cell test. This only requires a blood draw, and can provide DNA information about the cancer if I understand it correctly (I'll know more in a few weeks after mine is complete). If your dad has certain DNA defects in his cancer, it could point the way to other treatments that aren't as harsh as platinum chemotherapy.
And I also have to ask: Does your dad have any opinion on his treatment? My father in law reached an age where he couldn't do any of the things he enjoyed anymore, so when he developed cancer he ignored the symptoms until it was too late to do anything, and truly wanted to pass as peacefully as possible.
Just a few scattered thoughts from me. It's a difficult time, try to enjoy each day you have with your dad. Are there TV shows he likes to watch or music he enjoys? Are there moments where he's alert enough to talk about his life and maybe he can tell you stories you've never heard before?
Thank you for the reply. My dad is currently on hospice and is sleeping almost 22 hours out of the day. He’s not alert and not responsive. He lost his voice and barely could eat a bite a day. The first week on hospice he was able to talk to us when awake but as each week passes - he gets worse.
This is quite confusing no bone mets visable on the scan
PSA 0.6
How can he be dying
This all indicates a good biochemical response
Confused
I would seek a second opinion
There is prostate cancer that doesn't generate psa. It is very aggressive.
Prostate cancer that doesn't generate PSA - how else can we check for it? Blood work?
It is neuroendocrine prostate cancer.
I would ask your question to Tall_Allen here. He has a private blog that I am certain will provide a detailed answer to your question:
prostatecancer.news/search?...
But you can get the most current information by engaging with him here.
I’m sorry for his apparently very advanced and aggressive cancer at such a young age. And for the fear anxiety and sadness it causes you. In spite of all the reasonable suggestions given by my brothers here, he may not be a candidate for heroic desperate treatments at this time. It may be that he is dying now and his time remaining is short. That is the implication of hospice.
... if that is so then what he needs is to have the presence and loving care of you and those most dear to him. To have your love and appreciation of him communicated to him. To surround him. To be honored for a life well lived. Consider this too, and perhaps ask him his wishes.
We placed him on hospice after he was discharged from the hospital because his pain was not controlled. At home, he was only on Oxycodone 20mg. On hospice - with morphine, his pain was finally controlled but he’s asleep all day. Hospice keeps telling us it’s his cancer progressing. Maybe part of it is denial but we keep thinking that he’s getting worse because he’s not alert enough to eat and drink.
It is the cancer of course. It is terrible and relentless. Know that you did and are doing everything right for him.
I agree completely with MateoBeach . Attempting to treat your dad at this point would increase his suffering and most likely he'd spend his last days in a hospital (and with the pandemic, limited if any visitors).
As hard as it may be to accept, you are being loving and compassionate by keeping him comfortable at home and surrounded by family.
He’s not too old . He should be a candidate for radiation.
Maybe it is colon or stomach cancer, something not influenced by hormone therapy? Take a CEA blood test?
Thank you so much to everyone that replied to my post. Thank you so much for all the information. I have no one else to talk to about this because everyone have just accepted that there’s no treatment, and that my dad is just too weak and is dying. I am so thankful to have found this community.
Dear wateraway. I commend you on your love for your father . He is blessed to have you . There is a point for all of us with advanced prostate cancer ,at which we all will submit to escape the pain and suffering . If he’s sleeping that much and incoherent ? . His time for complete mercy can be near .. we all must accept this ...love is eternal .. Everything done in the name of love is good . May you find strength in this trying time ... I’m proud of you for standing by him . Now lead your family in this transition .. 🙏. Scott
Thank you so much for your kind words. I hope my dad knows how much I love him.
He does ❤️❤️❤️🕊🕊🕊
Please be kind to yourself . Don’t take the world on your shoulders . Even if you’re the eldest ? Life and death are not our to call but ours to accept .. Time to love each other .. 🕊🕊🕊❤️
Our love is with you and your Dad!!! This is difficult....we pray his suffering is alleviated!! Still, just in that unlikely scenario of something missed, seek 2nd opinion,,,,,if nothing else, to ease your mind that you did everything you did for the Dad that you so obviously love so much!
Generally cannabis should be contraindicated for prostate cancer.
This is the one situation where it should be considered.
You're a wonderful daughter. Do NOT let your Dad's Doctors intimidate you. They are just humans (like all of us) so speak up (loudly) if you want them to listen to you. You are paying them, and you deserve to know all the facts regarding your Dad's health. If need be threaten the doctor(s) that you will take their lack of information to a higher authority in that institution or to your attorney.
BTW if you wish you can mention the institution and the doctor's name(s) here.
Sorry but I hate to see customers (I don't call us patients, we are customers) get lousy treatment. Good Bless you and your Dad and the rest of his family and his friends too.
j-o-h-n Sunday 10/11/2020 6:44 PM DST
So sorry you are going through this. Whatever happens I wish you and dad the best.
Not what you're looking for?
You may also like...
My Dad's Metastatic Prostate Cancer Update
What is it like to die from prostate cancer (I know terrible question)
How can I help my dad to live with stage four metastatic prostate cancer, in lymph, and through bones. Adt plus chemo: healing stories?
Don’t know where I go from here.
What is the most accurate Test/Scan to do when one has Metastatic Castration-Sensitive Prostate Cancer?
Update on my dad. Need help, hope. Docetaxel over 80?
Update on my Dad: Liver Mets, next steps?
Could BAT be our last chance?
My Dad died... but not from PCa
In 2016 I joined this ADV Prostate Cancer club. My forward path is dark, uncertain, and full of fear. I seek info on what to expect.
