I have been reading everyone's courageous stories and helpful advice all afternoon. I have now got the courege to share my Father-in-laws story.
It is very sad to say, but he never went to the doctor. He did not believe in modern medicine, until now. He is 67, only eats organic food and walks 5 miles a day. For the past year and half he has been not feeling well and lost 60 pounds. He would not seek treatment and had excuses for every symptom. My husband finally wrote him an email (to try and get the point across in writing) that everyone was concerned and this was not fair to do to the family. He went to the doctor who sent him to a urologist. Biopsy and scans done. End of August 2017. Prostate cancer. Catheter inserted and Lupron started September 2017. He was in extreme pain. A mixture of not taking the pain medicine, and it not being strong enough was the problem.
Three weeks ago he couldn't walk and was taken to the ER. Metastasized to Spinal Cord. 10 doses of radiation to spine. To even get him out of bed to the wheelchair was a struggle. He has not walked alone since the day before the ER visit. The radiation seemed to help, as he was more alert and not in pain, but still not walking alone. On Monday he was taken to the ER because he was not making sense and my mother-in- law thought he might have had a stroke. MRI confirmed 3 lesions in the brain. Also in the liver. Calcium levels were extremely low. They want to do radiation of the brain starting Monday. He must have had this for 15 years or more I am thinking from my research.
As a family we are struggling with if that is even something we want to put him through? We know the days are limited and don't want to give any unnecessary pain or other issues that radiation comes with. We are desperately looking for anything, or any insight from another family or survivor story.
You are all very brave, wonderful men (and family members). I will keep you all in my prayers. Thank you for all the insight and knowledge I have gained. My husband turns 40 in April and is going to the doctor to get checked ASAP!
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tomsb1
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This PBS Frontline Documentary Film "Being Mortal", based on the book by Dr. Atul Gawande might be good for the entire family to watch. The book itself is also a very worthwhile read at such times in a patient's/family's life.
As is the book, "When Breath Becomes Air", by Paul Kalanithi.
All these types of things can take a Patient and Family beyond the realm of doctors and medicine, and into more Meaningful things at the end of life more related to Comforting and Compassion and Love and personal Values, and on-going Healing in many ways, even if there may no longer be a medical Cure.
I am deeply saddened for your family's and father in laws pain from this horrible disease. I am so glad your husband will be checked and hope he will continue and generations to come also.
Thank you! My husband has been telling all his friends and co-workers in hopes it helps someone else.
spine and brain mets seem like the problem. his general health may be a limiting factor.
if the mets are growing quickly, you may not be able to get ahead of them.
I would certainly ask, and not assume.
Preferably an "antagonist" rather than an "agonist" class drug like Lupron, to avoid the 'flare', if he can tolerate it. Othwise Casodex first or Enazlutimide first, or ...
Some sort of hormone therapy.
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Radium 223 if the hormone therapy seems to do some good.
Of course a doctor should be the person to assess the suitability of anything.
Yes, he gets another Lupron shot this week. He has not been discharged from the hospital. He is unable to walk. He is suppose to start radiation on his brain tomorrow, however he has now contradicted c.diff from the hospital. When it rains, it pours.
With all that going on,do you really want to put him thru more? Find your peace in God, and just give him the best quality of life that he has left. Doctors are just using him as a Ginnie pig, yes I don't really like doctors either. They don't tell you everything. I have been thru pc and surgery they tell me I'm free. I'm grateful even with the side effects. Now all I'm doing is living the best that I can. And letting god!!!
lupron, a pituitary agonist, is easy, at least for the first few years. Though you need to avoid the flare I would say. The pituitary antagonist (Gonadotrophin-releasing hormone (GnRH) antagonists) would be better to avoid further short term nerve damage if the other side effects are tolerable. No?
If you are worried about stroke, and not worried about bleeding, he can take a blood thinner. Rivaoxiban. If not in the formulary, Ipixiban is, I suppose, the next choice. I dont know why he would not have been given "low molecular weight" heparin. Even warfarin, and dont check the INR.
Please know that we are all praying for your family. You are not alone. If it helps you, use this sight to continue to share with us your concerns, frustrations and fears. Like the song says, “People like us we have to stick together “. There are a lot of shoulders here for you to lean on.
The only medical advice I could offer is you may want to ask the medical oncologist to add Zytiga to the Lupron.
A minimally invasive procedure known and SIR SPHERES could be tried before using the H word. This would slow down the liver mets, Medicare pays for it in most circumstances:
I imagine that the liver mets are not the likely worry, since the liver can continue to function for quite a while with mets. Maybe wait on that to see if the brain mets are a problem...?? And of course the spine IS a problem already. Lupron could help that. Might take many months to do it though.
Yes, I fear that the spine and brain are the problem. He can not walk. He is lucky to stand up once a day with the physical therapist. He went from dancing at my wedding at the end of October to bedridden. Very sad to witness!
Also I might add on a personal note, my father has a very aggressive cancer and he was religious in going to the doctor for PSA checks over the years. He unfortunately fell between the "cracks" in early detection due to how his particular disease behaves, an aggressive sub-type that produces little PSA. While your father-in-laws actions of not going to a doctor is of course a big factor, keep in mind its the aggressiveness of the disease and the unlucky fortune of having this disease, that has ultimately led to your father-in-laws present condition. My father cannot learn unfortunately from his experience, he was unlucky and will meet his fate without ever giving up the fight and will die like a man. What will i do? I am in my mid 40's, I will never trust a PSA. If you have any discomfort find an excuse to have imaging, complain like a sissy or complain like a freeloader that wants SSI benefits till the doctor obliges for 3D imaging or a biopsy. No Surrender, Be Strong, Never Give Up.
Since you don't trust the PSA, how often is a DRE recommended for someone with a family history of aggressive prostate cancer? I'm asking for my husband, as his grandfather had it, and now his father. My husband is 39 and going to the doctor after the holidays to get checked.
I,m 43 and the urologists told me every 2 years (DRE and PSA) but I plan on having one every year. DRE is not foolproof either. I may also get a prostate 3TMRI just to be sure since I have had some small urinary problems. This is the only way to be sure but its expensive. Remember your family isn't alone, its a terrible thing to witness an aggressive disease destroy a person you love. Let this guide you and your husbands future prevention, not a urologists opinion or a national "standard" or "guideline" for prevention.
Thank you John! God bless you and your family also!
67 is not very old. Sorry for this suffering. He is fortunate to have you as his caring daughter in law. I pray for mercy and for him to be surrounded by love.
UPDATE... I wanted to thank all of you for your kind words and suggestions. My father-in-law passed away January 1st.
From this, my husband who will turn 40 next week went to a well known urologist to get tested (as his grandfather and father both had prostate cancer). His DRE was fine and PSA was 0.7. Doctor recommended some proactive things to him. He will go back next year. Thank you for all your insights. I continue to read the research and suggestions everyone posts. Stay strong and be positive ❤
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