Quick background of the diagnoses. His PSA went from 2.1 to 3.1 in a year then this year it shot up to 32. He’s a Gleason 7 and apparently has 2 bone Mets however my wife is going with him to clarify on Monday. He has met with the radiologist who has put him on the one month hormone therapy and then he will have the Lupron shot and then 8 weeks of radiation. We are very scared right now and he seems to be in a lot of pain I guess my question is will the pain ease for him at some point?
Glad to have found this website and much luck to you all.
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craziecanuck
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Just to add had a biopsy with 6 of 12 positive, CT scan and Bone scan. Also had a bone density scan a month ago which came back good. Will update with number of Mets and if it’s a 3+4 7 or 4-3 7.
Put info in your profile…e.g. , age , clinical finding, treatment plan for your father. That way everyone has the details when you ask a future question. BTW, ask about him getting genetic testing. It might help his treatment and to know if there are germline mutations. And I think you are now at higher risk of having this disease so be sure to go for checkups.
If he's metastatic, he needs systemic therapy like the hormone suppression he's starting now. That should relieve his pain fairly quickly as long as cancer is hormone sensitive (about 90% chance). I had a PSA in the hundreds at diagnosis and could barely walk. Pain free in 3 weeks after starting hormone suppression (ADT).
They start on Casodex because there is a testosterone increase initially with Lupron and that could make it worse for a while. The Casodex blocks the hormone receptors so he can get past the initial testosterone "flair".
But Casodex is also effective by itself to block the prostate cancer from using the hormones so pain relief should be coming even before he gets the Lupron shot. I could feel a small improvement at 3 days after starting Casodex. Got my first Lupron shot a week later.
Sorry he is stuck in this situation. I wanted to let you know from my experience that back pain is such a tough thing to nail down. Just the stress of PSA tests and a scan saying there is a MET can help convince yourself there is pain and there will be. If there is a way to calm himself and sleep good and try and not think about it it will do wonders. A THC gummi at night helps a lot. I know easier said then done...
YES...The pain goes away as the cancer cells die as a result of hormone therapy or radiation.If pain did not subside...we here on this forum would be talking about pain 24/7 every day.
It does get easy on family member when they realize that Prostate cancer is like a chronic disease and men can live for many years with treatment. First 6 months are hardest and cause sadness, confusion, helplessness and fear...Also knowledge mitigates much of the fear.
Hello, Greetings from another Crazy Canuck. You need to know that everyone is different. I was diagnosed nine years and three months ago with aggressive PCa. My PSA score at the time was just over 1700 with a Gleason 8 score. Extensive bone mets from my neck to my knees but fortunately no soft tissue involvement. What is happening to your Dad is normal and follows Canadian protocol. Casodex (bi-calutamide) first to prevent the testosterone flare that is common to most first tier ADT drugs. After a couple of weeks an ADT drug is added to the mix. Most often it is Zoladex (goserelin). At some point, Casodex is stopped. Where I live, you initially start with a radiation oncologist and when the ADT drug starts to fail you get switched to a medical oncologist. He/she normally gives you the choice between Zytiga (abiraterone) and Xtandi (enzalutamide). They are the Pepsi and Coke of second tier drugs. Both are anti-androgen (anti-testosterone) medications. Both have different mechanisms of action and different side effects. They both also have their advocates and their detractors so choose wisely. In my experience the pain will ease significantly. When the second tier drugs fail it gets real interesting but that is a long way off. Your Dad is definitely embarking on a long and winding road. Good luck to him and tell him to stay positive.
He had his radiation apt last week and this week he meets with a Chem doctor! My wife is going with him to take notes and ask some more questions. He’s a week into hormone therapy.
Hello, I switched to a medical oncologist at that time. Then and now he watches me like a hawk (I.e. monthly PSA tests). I think my PSA rose to 3.0 when he offered either Zytiga or Xtandi. For several reasons I chose Xtandi (enzalutamide).
Hello, As mentioned before my PSA at diagnosis (May 30, 2013) was a little over 1700. From there it steadily dropped to <0.04 (June, 2015 to February 2016). That was considered at the time undetectable by the lab where I was getting my blood work done. From there my PSA climbed slowly to 3.4 (September 18, 2017) . That is when I started Xtandi (enzalutamide). The roller coaster went back down again in May, 2018 to its lowest measurement of <0.008 (now considered undetectable). I was told the lab was doing more precise measurements than it was three years earlier. My PSA stayed there until March, 2019 when it slowly started to rise again. It climbed to 0.59 in August, 2019 and then for reasons largely unknown to me but much appreciated it went down again to undetectable (<0.008). My PSA stayed there until the start of the New Year (2020) when it started to slowly climb again and it has been going up ever since. It is currently 2.3. That is probably more information than you require but there it is. Hope it helps!
My husband had prostate removed in 2016 all was good until PSA started rising Jan 2021. They sent my husband for bone scan and MRI and prostate cancer had metastasis to the bones, femur and hips. They put him back on Eligard HT and Xtandi along with Xgeva. The Xtandi stopped working after 15 months. They did another bone scan and MRI and scans came back the same from 15 months earlier however Oncologist decided he should have Chemo since PSA was rising. It went to 48. He is now having Chemo which hasn't been great for him. He crashes 3 days after Chemo for at least 4 days, then just starts to feel a bit better and the Chemo cycle starts again. He just finished his 4th treatment and he has another 6 to go, once every 3 weeks. Just wondering if you had Chemo or not and if so when and how you did. Asking from one Canuck to another. We are on Balsam Lake in Kawartha.
Hello, Greetings from the Fraser Valley. No I have never had chemo. However after many years my PSA is starting to rise. It is currently 2.3. Drat! I see three options. One is radiation to any lesions that are starting to act up. Two, is to volunteer to participate in a clinical trial being offered by the B.C. Cancer Agency (BCCA) in Vancouver. I have an appointment set up for September. Three, I am a very big supporter of Lutetium 177. There are a couple of trials in Vancouver that are still recruiting. I am open to travelling elsewhere to seek treatment (probably Germany). As for your husband, if his reaction to chemo (docetaxol) is so nasty consider asking your medical team about Jevtana (cabazitaxel). The side effects are supposedly not anywhere near as debilitating as standard chemotherapy. Good luck!
The hormone therapy should give him a lot of pain relief. They can also zap any painful bone metastases with radiation to relieve any pain that the hormone therapy doesn't relieve.
Every BODY is different depends his current lifestyle too is he active? My dad had bone Mets and had a lot of pain radiation didn’t alleviate his pain he just tolerated in silence. Radiation actually made his skin feel like he had a sunburn. That caused his pain too. The pills he tolerated them but they had side effects. I would stress watch his cholesterol ultimately my dad died from a heart attack the pills have adverse side effects and none of the doctors really cared to hear my complaints but now I see there are articles being written about Xtandi and Zytiga causing adverse side effects to the cardiovascular system but it’s being kept on the down low because big pharma charges $7000-$10,000 a month for those pills. Best of luck
Doesn’t it drive you crazy…I have said this before, makes me hate the medical profession sometimes. You need an MO that listens and hears you. I feel for you!
I sympathize with Olivia. Her father passed at the age of 85 about 7 months ago.
He was diagnosed with PC 7 years earlier.
I am confused by you and her.
I am grateful to the Dr's, medical and research institutions that have allowed me to live these past almost 3 years as I was about 1 to 6 months from dying of PC when I first saw a Dr.
Stage 4 cancer is serious even though I try not to think about it 24/7.
There has to be a risk /benefit in treating it. Unless for some reason you think it will never kill you.
Not a attitude that the Dr.s and Pharma are against you or negligent.
Of course do your "research" and ask questions but again the MO has both knowledge and experience. Trying to save you or hubby from dying soon of cancer and at the same time knowing the risks of side effects.
The cardio side effects and others from ADT be it standard lupron/eligard or Zytiga, Xtandi have been known and watched for in patients since day one.
Recently a confirming research paper was disseminated to the medical community reiterating the side effects of Zytiga especially and those who think there is a conspiracy looked at as if it was a newly divulged secret.
Risk/Benefit. For example chemo had a huge benefit for me. Did it cause neuropathy in my feet, a risk---yes. Do I claim the Dr's were negligent or big pharma had something to do with it---no.
I am so confused by you. Are you serious about treating cancer or not?
After reading your post, it is clear you are confused, extremely confused if you have to ask anyone on this site if they are serious about treating cancer or not!! There are sensible well educated people that want to use every possible way to reduce the harms from this horrible disease and therapy. There is nothing wrong with following cancer treatments with naturopathic measures to become healthy again and maybe prevent a reoccurrence, without being mocked by the medical profession, or people like you. CAMPSOUPS don’t ever assume you know how any of us are feeling these days, if someone chooses no chemo, or no Zytiga, maybe they know something you don’t! I am glad it worked for you, but one size does not fit all.
I hope I didnt assume anything. Thats out of bounds for me. Especially considering the fragile situation we all are in.
Adding naturopathic might be fine.
What's confusing is why one feels they hate the medical profession and everyone in medical science, FDA, pharma industry becomes a hated Conspiratorial enemy. That's what confuses me. Why the hate and the total distrust for life saving therapies.
Craziecanuck, I'm originally from Detroit, and Windsor (South actually) just across bridge and tunnel. Played Hockey as a kid. Much respect to my Canadien Brothers. I remember the Canadian National Downhill Ski Team were known as the Crazy Canucks for their fearlessness. Listen, to your question. My Dx was similar. Read my Bio by clicking on my photo icon. Bone Scans are known for false positives. All of previous Sports injuries and previous surgeries lit up like a Christmas tree. Had a bone met in spine that was bright. 5 mos later w 5 mos of ADT Therapy it was unchanged. MD Anderson believed it was probably sclerotic activity from prev injuries, or would have been much dimmer. So dont give up hope. Some of those bone mets may be prev injuries. Mike
Also, I had a suspected/questionable bone met in my first rib. At 5 mos at 2nd bone scan, it was gone, leading MD Anderson to suspect it probably was PCa, but the ADT Chemicals probably put it to sleep for good. Mike
Hi As scary as this time is for your family, there is a lot that can be done for PCa. My husband went whole foods plant based as his urologist was late starting hormone therapy and did nothing for several weeks despite having a PSA of 50 at biopsy and pain in the hips indicating mets. The pain started to get much better before the medication was started but as soon as he was put on Casodex, the pain went away. They put him on Casodex for a few days before the injection.
Hi, you have come to the right place and will get lots of great help and advice. The bicalutamide will immediately start reducing PSA and should begin to alleviate some pain. The Lupron will take probably a month or so to start kicking in and doing its work. As has been said, a healthy diet of mainly plant-based with minimal meat and dairy is good. Also, limit alcohol and caffeine (apart from green tea which is really good).
One of the most important things is to keep active - regular resistance (weights) training to minimise muscle and bone strength losses and cardiovascular exercise (cycling, swimming, brisk walking, etc) will pay dividends down the road.
Welcome. You will get a lot of great advice on this site. Many of the men here have been doing battle with PCa for a long time and willingly share their experience, strength and hope. I have similar history with your father. PSA moved up from 4.7 to 13.5 in a short time at the start of 2022. Then shot up to 27 with a Gleason score at 10. A PSMA scan showed one spot on my hip bone that lit up very bright.
My radiologist started me on Casodex and my Urologist gave the first Lupron shot a month later. I've started and finished 9 weeks, 44 sessions, of radiation. and go for my second of every 6-month Lupron shots Nov. 1st.
I had blood work done a week after I finished radiation treatments as part of my annual doctors' exam. My PSA measured <0.01.
I luckily have not had much pain.
Don't hesitate to ask as many questions as you need to. These guys are great about reaching back out when you ask for info!
Just got an update from my wife when they went to the chem doctor. He has Mets on his neck, shoulder, spine, ribs and lower back so way worse than what I thought. There has not been any spread to soft tissue only bone which is one positive from all this bad news. Hopefully the treatments start to work. RyderLake2
I have a similar case 4+3=7 Gleason with PSA 12 with high volume mets to spline, pelvis and ribs. ADT Lupron and Xtandi bought the PSA to less than 1. Cancer is stabilized for 3 years. Radiologist said cancer was too wide spread to treat unless I had localized pain.
Hi Craziecanuck. Assume you are in Canada with a name like that? If so, recommend you and your father connect with one of the many prostate cancer support groups across Canada. Also and depending where you are, you may have access to a Peer Navigator through TrueNth. I was late contacting both but they very much helped and I only wish I did so sooner.
He has and talks to other people that are in the same situation. I think it has been great for his mental health. He’s currently part of a program that looks into exercise and advanced prostrate cancer. Hope you’re well.
I was diagnosed with stage 4 over 5 years ago (several bone Mets and several nodules on lungs,etc. some pain. Gleason of 9. Received 3 month slow release Lupron (still on it) and a chemo regimen (docataxel) which eliminated pain and non-bone lesions. Had to go to aberaterone acetate after two years (control branch of a clinical trial). About 6 months ago had leg pain from growing tumor but it was treated with radiation which eliminated the pain. I am now on a new clinical trial. Again on the control side which is enzaludimide. If there are new or expanding tumors I will be switched to the leutitium (not sure of spelling) side which is an isotope that specifically attacks cancer cells (expecting that within next month or two). I’ve made it nearly 5 years and feel pretty good. Cancer doesn’t go away but they can slow it down or make it dormant for awhile.
Father is doing well. He took Lupron shot and is on Erleada. PSA has been going down and last blood test was at 1. He is due for a bone scan next month. If he didn’t tell you he had stage 4 cancer you wouldn’t know. Hope all of you are well.
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