husband with advanced prostate cancer refuses treatment after doctors told him his sentence

lindachampagne60 · September 2011

My husband has been diagnosed with cancer of the prostate spreading through his bones, groin, legs, swollen testicle ,swollen leg and foot on right side, on hydrocodene and metadone. He recently was on morphine because doctors tod him he had 3 to 6 months to live. He was alergic to the morphine, and it made him itch, he was constipated. I dont know how doctors arrived at that conclusion from one recttal exam, and two blood test, then my husband refused treatment, any treatment except for pain. he is at a place right now where he is so much in pain, only a hot water bottle between his legs , is the only thing that gives him relief. he limps when he walks. He cant find a comfortable place to sit anywhere, even with pillows. He is very cranky, I undersatand why, but when the doctors gave him the 3 to 6 month sentence, and they said all they can do is give him pain meds, so i guess it was already too late. He had four brain seizures in the last two years. We dont know where the cancer has spread, and if anyone has experienced this with a loved one, please tell me what to expect, no matter how morbid. I need to know, and I cant go to the doctors with him, as he doesnt want me there or to talk about it. He had a psa two years ago of 34. im sure its higher now considering his awful pain. He refused a biopsy.. Someone out there, if you can give me as much info as possible, I would be grateful. How long do you think he has with those symtoms. Linda

Perineum · September 2011

tough situation
Hi Linda,

I'm really sorry for the situation you are handling..
I don't know to answer your questions, but consider seeing another doctor, maybe there is another medicine that can help with the pain and treating the cancer.
I really hope and pray that he will get better!!

2ndBase · September 2011

Treatment Choice
Linda, I am at or past the stage of decline of your husband but with the aid of hospice, exercise in a hot tub, plenty of meds I am still able to work a job 18 hours a week and play a little golf. Today I take my 4th treatment for pain control on large tumors on both ribs. I had my spine tumors radiated in May and it helped with the pain alot. The meds will never get any thing close to all the pain, believe me. So it is way beyond time for a cure and he needs to get with hospice asap to get back some quality of life and anyone who tells you otherwise just wants your money. Hospice and all the meds, equipment, etc is totally free of cost. As far as time left to live the cancer itself will eventuallly make him to weak to fight off some other illness. The meds only make you weaker but no human being could take the pain involved without the meds. He could well several years and have a decent quality of life if his attitude is right and he takes control of the situation. I have a lot of work involved in staying out of pain but without the effort life would not be worth much. Try not to stress and get him some comfort. I wish you all the best, Mark

VascodaGama · September 2011

2ndBase said:
Treatment Choice
Linda, I am at or past the stage of decline of your husband but with the aid of hospice, exercise in a hot tub, plenty of meds I am still able to work a job 18 hours a week and play a little golf. Today I take my 4th treatment for pain control on large tumors on both ribs. I had my spine tumors radiated in May and it helped with the pain alot. The meds will never get any thing close to all the pain, believe me. So it is way beyond time for a cure and he needs to get with hospice asap to get back some quality of life and anyone who tells you otherwise just wants your money. Hospice and all the meds, equipment, etc is totally free of cost. As far as time left to live the cancer itself will eventuallly make him to weak to fight off some other illness. The meds only make you weaker but no human being could take the pain involved without the meds. He could well several years and have a decent quality of life if his attitude is right and he takes control of the situation. I have a lot of work involved in staying out of pain but without the effort life would not be worth much. Try not to stress and get him some comfort. I wish you all the best, Mark

Get a Second Opinion before Given up
Linda
I am sorry for the advanced diagnosis of your husband. Hospices may provide the best comfort to patients in similar status, if your husband wishes to do nothing about the disease. Many patients live many years with this cancer which ironically causes discomfort and a nasty end of life.
Nevertheless you could get opinions from other oncologists and decide on a conclusion after investigating on options.

There is one newer drug which has been on trials on advanced cases with bone metastases which may provide some pain relief caused by bone mets. It is named denosumab (XGEVA is the trade name) and it attacks prostate cancer in bone. You can read details in this site;
http://www.worldpharmanews.com/amgen/1518-xgevatm-denosumab-significantly-improved-bone-metastasis-free-survivalhis status.

Hopefully he gets better.

VGama

lewvino · September 2011

Linda,
So sorry to read
Linda,
So sorry to read about your husband. One thing you did not mention is his age. Would you mind sharing? Also you mentioned two years ago his PSA was 34. Was no treatment done at that time?
It also sounds like your husband has not had a prostate biopsy if I'm reading your post correctly.

As others have suggested I would encourage your husband to seek a second opinion.

Best wishes and please keep us updated.

lewvino

lindachampagne60 · September 2011

VascodaGama said:
Get a Second Opinion before Given up
Linda
I am sorry for the advanced diagnosis of your husband. Hospices may provide the best comfort to patients in similar status, if your husband wishes to do nothing about the disease. Many patients live many years with this cancer which ironically causes discomfort and a nasty end of life.
Nevertheless you could get opinions from other oncologists and decide on a conclusion after investigating on options.

There is one newer drug which has been on trials on advanced cases with bone metastases which may provide some pain relief caused by bone mets. It is named denosumab (XGEVA is the trade name) and it attacks prostate cancer in bone. You can read details in this site;
http://www.worldpharmanews.com/amgen/1518-xgevatm-denosumab-significantly-improved-bone-metastasis-free-survivalhis status.

Hopefully he gets better.

VGama

prostate cancer
Thankyou VGama for you concern. I wish he would take the advice of others and try something. Its the doctors that said they couldnt do anything more for him, and I see him declining. I told him what you said about the new drug, and he doesnt want to hear it. He is also starting to do strange things, like putting the catsup with the dish detergent. He has already had four seizures. i really wish I knew what stage he was in

lindachampagne60 · September 2011

lewvino said:
Linda,
So sorry to read
Linda,
So sorry to read about your husband. One thing you did not mention is his age. Would you mind sharing? Also you mentioned two years ago his PSA was 34. Was no treatment done at that time?
It also sounds like your husband has not had a prostate biopsy if I'm reading your post correctly.

As others have suggested I would encourage your husband to seek a second opinion.

Best wishes and please keep us updated.

lewvino

prostate cancer
Thankyou for your post and answering me. He is 66 years old, NEVER had any treatment and NEVER had a biopsy. It was the VA that told him he had three to six months to live, I just dont see that happening, although he is suffering

lewvino · September 2011

lindachampagne60 said:
prostate cancer
Thankyou for your post and answering me. He is 66 years old, NEVER had any treatment and NEVER had a biopsy. It was the VA that told him he had three to six months to live, I just dont see that happening, although he is suffering

Linda,
I agree with Vasco
Linda,
I agree with Vasco and I would STRONGLY encourage your husband to not give up the fight! We do not know the extent of his other health problems but for the prostate cancer issue I would encourage you to seek another opinion. Get the biopsy done to determine a Gleason Grade. This will be made up of two numbers such as 4 + 3 = 7 or 4 + 5 = 9 etc. It will also tell how many sample cores have cancer in them. I am not a doctor nor even in the medical field but it sounds like the 3 - 4 months you mentioned might be from some other factors besides the prostate cancer. ASK questions of the doctors on the side. Your husband is a veteran so encourage him to fight! Don't give up. There have been many men that have gone on to live many months and years with advanced prostate cancer following proper treatments.

Larry
Age 56
Davinci Aug, 2009
Gleason 3 + 4 (7)

VascodaGama · September 2011

lindachampagne60 said:
prostate cancer
Thankyou for your post and answering me. He is 66 years old, NEVER had any treatment and NEVER had a biopsy. It was the VA that told him he had three to six months to live, I just dont see that happening, although he is suffering

There is always HOPE
Linda

I do not want to criticise your husband for his attitude but his doctor’s “death threat” is in my opinion unreliable and false.
In your first post you commented that the advanced diagnosis was done via a DRE and two blood samples. In your last answer to Larry above you also commented that none biopsy took place. I wonder what other tests (image studies) or past clinical staging or health check-ups’ results occur to lead the doctors in getting to the conclusion of three/six months of life expectancy.

Your husband at 66 is very young to give up to this bandit. There are so many stories similar to the facts of your husband, in which successful outcomes occured, in defiance of the odds, which makes me to insist in saying for him to get a second opinion.
Blood tests can signal with high precision any probability of cancer but only a biopsy will rule its existence.
The doctors may have found through the blood samples high markers for PSA, PAP, PC3, etc. However, many patients with high levels of those markers survived many years with reasonable control of the disease. Even the ones that choose not to take any medication or do treatments have done well in the control of its advance for a better quality of life.

In this site YANANOW (You are not Alone now), you can read the real stories of some patients with advanced cases of prostate cancer. I hope your husband take some time and listen to your reading or that he gets to read them himself.
Here is the direct link for very high PSA cases;
http://www.yananow.org/exp_data.php?query=where+cast(diag_psa+as+decimal(9,4))+>=+20+order+by+cast(diag_psa+as+decimal(9,4)),name&desc=PSA+greater+than+20

In this site your husband can read the story of a patient who had an initial PSA of 1,500, with a very high Gleason score of 9. He was staged T4 with distant metastases at the bone and his only treatment option was Hormone. He did ok. Please read;
http://www.yananow.org/Mentors/AlanC.htm

Your husband could also engage in certain alternative therapies or diets that are known to be friendly in lowering symptoms of cancer. Be careful because some are unreliable and could jeopardy his status leading to a worsen outcome.
Just press the name “Alternative Therapies” in this site to get links;
http://www.yananow.org/choices.htm#alt

I hope my post can help you and your husband in sharing these delicate moments of his care.

VGama

havit2 · September 2011

My choices
Linda,
My dx was similar to your husbands. In December 2009 I was having severe pain in my back and legs it became so bad I could not sleep and walking was difficult. I spent many nights in the jaccuzzi because it was the only relief I could find. In January, after seeing several doctors, I was diagnosed with stage 4 prostate cancer with mets in my spine, legs, pelvis, ribs, arms, neck and skull. My PSA was 978 and I had lost 30 lbs from Dec thru Jan.
My Urologist recomended either hormone shots or an orchiectomy. I chose the orchiectomy along with daily casodex.

It has been over a 1.5 years and my life has improved dramatically. My first psa after surgery was 1 and since it has been less than 0.1 not detectable.

Reading your post reminded me of how horrible this disease is and how blessed and happy I am to be alive today.

My thoughts and prayers are with you and your husband

John

lindachampagne60 · September 2011

VascodaGama said:
There is always HOPE
Linda

I do not want to criticise your husband for his attitude but his doctor’s “death threat” is in my opinion unreliable and false.
In your first post you commented that the advanced diagnosis was done via a DRE and two blood samples. In your last answer to Larry above you also commented that none biopsy took place. I wonder what other tests (image studies) or past clinical staging or health check-ups’ results occur to lead the doctors in getting to the conclusion of three/six months of life expectancy.

Your husband at 66 is very young to give up to this bandit. There are so many stories similar to the facts of your husband, in which successful outcomes occured, in defiance of the odds, which makes me to insist in saying for him to get a second opinion.
Blood tests can signal with high precision any probability of cancer but only a biopsy will rule its existence.
The doctors may have found through the blood samples high markers for PSA, PAP, PC3, etc. However, many patients with high levels of those markers survived many years with reasonable control of the disease. Even the ones that choose not to take any medication or do treatments have done well in the control of its advance for a better quality of life.

In this site YANANOW (You are not Alone now), you can read the real stories of some patients with advanced cases of prostate cancer. I hope your husband take some time and listen to your reading or that he gets to read them himself.
Here is the direct link for very high PSA cases;
http://www.yananow.org/exp_data.php?query=where+cast(diag_psa+as+decimal(9,4))+>=+20+order+by+cast(diag_psa+as+decimal(9,4)),name&desc=PSA+greater+than+20

In this site your husband can read the story of a patient who had an initial PSA of 1,500, with a very high Gleason score of 9. He was staged T4 with distant metastases at the bone and his only treatment option was Hormone. He did ok. Please read;
http://www.yananow.org/Mentors/AlanC.htm

Your husband could also engage in certain alternative therapies or diets that are known to be friendly in lowering symptoms of cancer. Be careful because some are unreliable and could jeopardy his status leading to a worsen outcome.
Just press the name “Alternative Therapies” in this site to get links;
http://www.yananow.org/choices.htm#alt

I hope my post can help you and your husband in sharing these delicate moments of his care.

VGama

Prostate post from VGama
Thankyou for that site. i will read it and beg my husband to read it. i agree with you as fas as the sentence my husband was handed. I did forget to mention one thing. In the beginning, after the prostae exam, they did give him a very strong dose of antibiotics, and when that did nothing, he refused all treatment. Maybe thats why doctors said there is nothing they can do for him, if he wouldnt help himself. But why the 3 to 6 months to live???

lindachampagne60 · September 2011

lewvino said:
Linda,
I agree with Vasco
Linda,
I agree with Vasco and I would STRONGLY encourage your husband to not give up the fight! We do not know the extent of his other health problems but for the prostate cancer issue I would encourage you to seek another opinion. Get the biopsy done to determine a Gleason Grade. This will be made up of two numbers such as 4 + 3 = 7 or 4 + 5 = 9 etc. It will also tell how many sample cores have cancer in them. I am not a doctor nor even in the medical field but it sounds like the 3 - 4 months you mentioned might be from some other factors besides the prostate cancer. ASK questions of the doctors on the side. Your husband is a veteran so encourage him to fight! Don't give up. There have been many men that have gone on to live many months and years with advanced prostate cancer following proper treatments.

Larry
Age 56
Davinci Aug, 2009
Gleason 3 + 4 (7)

Thankyou Larry
Without a biopsy, which he was afraid to have, I dont see why they gave him the 3 to 6. If there was something else going on, shouldnt they have told him?? I think he is at the end, because he is so skinny, limps, and is in costant pain

lindachampagne60 · September 2011

havit2 said:
My choices
Linda,
My dx was similar to your husbands. In December 2009 I was having severe pain in my back and legs it became so bad I could not sleep and walking was difficult. I spent many nights in the jaccuzzi because it was the only relief I could find. In January, after seeing several doctors, I was diagnosed with stage 4 prostate cancer with mets in my spine, legs, pelvis, ribs, arms, neck and skull. My PSA was 978 and I had lost 30 lbs from Dec thru Jan.
My Urologist recomended either hormone shots or an orchiectomy. I chose the orchiectomy along with daily casodex.

It has been over a 1.5 years and my life has improved dramatically. My first psa after surgery was 1 and since it has been less than 0.1 not detectable.

Reading your post reminded me of how horrible this disease is and how blessed and happy I am to be alive today.

My thoughts and prayers are with you and your husband

John

Thankyou john.
That is amazing. i want him to read this, but he said he is ready to die and doesnt want to talk about it. Very frustrating for me. He is going to leave me a widow for the second time, the other husband had colen cancer

mrspjd · September 2011

lindachampagne60 said:
Thankyou john.
That is amazing. i want him to read this, but he said he is ready to die and doesnt want to talk about it. Very frustrating for me. He is going to leave me a widow for the second time, the other husband had colen cancer

linda c
linda,

Welcome. I’m truly sorry that both you and your husband are suffering though this ordeal and hope some the excellent info previously provided by the knowledgeable posters has helped you cope. I wanted to offer a few add'l comments without contributing to the anxiety and stress levels that already must be at challenging levels.

With due respect to you and husband: If husband has made his decision to stop fighting the PCa (IMO it is unclear if that is the “official” dx based on the info provided thus far—it could be another type of cancer or disease), AND he has made that decision knowing full well that there are palliative txs (not cures) for late stage disease, AND he has made that decision being of sound mind, not under the duress of debilitating pain and severe depression, then IMHO, his decision is to be respected. He should not have to suffer (as you described) and should be allowed death with dignity. Additionally, if he has advanced PCa with bone mets, he is at risk of falls and further injury which would only add to the severity of the current situation.

As another poster has already suggested, in-home hospice care should be arranged without delay. You or he (if he is able) must talk to his doctor, advise him of the decision and request that a social worker and hospice nurse be assigned to husband’s case immediately. Hospice care will provide comforting services/strong drugs to mitigate husband’s pain (advise them of his reaction to morphine) and make him as comfortable as possible, without performing any heroic measures to prolong life. And hospice workers should be able to assist & provide services for you as well.

If, on the other hand, husband has a change of heart, maybe after reading some of the previous posts from men who have “been there and back,” then I recommend you immediately find an new, independent oncologist who specializes in PCa to 1) establish and confirm that husband has T4 mPCa (stage 4 metastatic prostate cancer); 2) discuss the best palliative txs to address the pain and curtail further disease progression, along with any possible side effects; 3) ask whether there are any cancer/caregiver support groups available that YOU can attend for yourself. You’ll need to take care of yourself first, before you can adequately take care of husband. For this you will need more than the advice from the good & caring people who post on this site can provide...you will need the face to face personal contact and experience from the people in the support group (and the group’s trained facilitator) to help you through this difficult journey.

Wishing you both peace and comfort during this trying time.

mrs pjd (wife of a PCa survivor, T3 stage)

BERTB · September 2011