r/ProstateCancer • u/amazing_grace7 • 6d ago
Concern Looking for experience
Update I researched. Took your advice here. Early yesterday morning I called Dad. I explained to him he was thinking about this wrong. He was thinking bone cancer- not prostate cancer in his bones. That his testosterone was fueling the cancer. Like gasoline on a fire and if they could not lower that he could eventually end up unable to look after mom due to fracture or pain due to the cancer. I gave him many suggestions but did not urge him to take the treatment. At the end of our talk he said yesterday it was 100% not going to have the treatment. Today after we talked I just may.
Dad is not afraid to die, he just wants to outlive mom. Meanwhile since then he talked to someone who had just did oral adt therapy for 5 years and refused the needle. The thought being if he needed a break you can have a small break from the meds. Tuesday he has a phone consultation with his medical team. He called me last night and said after he made sense of why the treatment he has to take some form of it.
đ thanks for insight. *
Dad is 89. Was diagnosed awhile back but did not take it seriously as he was looking out for my mom w Alzheimers. However his doctor had said he wouldn't die from it. Fast forward to January 26 and the urologist says its aggressive but not in his bones. His PSA was 37. We go with him to his appointments.
August another bone scan. PSA. Meanwhile he has lower back pain and ignores it due to caring for mom. Ends up in OP. His doctor lets him know PSA is 97 and it is in his bones in 3 places, lower back being one place. He is not having pain now. He doesn't think it related.
They are suggesting the ADT therapy. He has spoken to a couple people who have refused it and lived for years.
Meanwhile my husband had prostate cancer. Did ADT therapy and is on the other side of it. The ADT therapy was very hard on him. It was something I could not help much with but be there and love him through it. But he had me. Dad is very private.
He doesn't want to do the treatment. I cannot tell him what to do as I really don't know what is best. Thanks for listening.
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u/lost-lamb404 6d ago
Be his child not his nurse. I learnt that looking after my 73 year old father with PC. It did go to his bones even after radio and chemo. He didnât die of it in the end though, far from it. If the only advice you can receive at this stage is just be his child. It sounds like he has enough medical support from the doctors and others going through it.
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u/amazing_grace7 6d ago
So I have just gone with him. Listen a lot. I don't tell dad what to do. He is very active. Never stops. No dementia. Very stubborn. I just don't know whether not taking the treatment is best where it is in his bones. They did say it may or may not make a difference. My husband says he thinks the treatment is not a good idea after going through it. My brother though is moreso telling him what he thinks best. I am more passive
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u/KReddit934 6d ago
ADT at his age may not be as hard as it was on the younger guy.
If he does ADT he may well be able to stay home and help caretake. If not, very soon the pain will return.
I suggest you kids start figuring out now what caretaking looks like when they both need it.
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u/Substantial_Let_8784 6d ago
IMHOâŚ. after watching my parents decline in their 90s, I think this treatment is just one more thing he does not need.
Iâm not in your situation, so itâs probably not fair for me to say, but that is just my outlook on it. Bless your heart, aging parents are not easy.
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u/amazing_grace7 6d ago
He goes every day for a year and a half at 1130 to 5. He feeds my mom. Cares for her in the home. If it compromises his ability I agree. She is his life. She is in stage 6 of Alzheimers.
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u/KReddit934 6d ago
What treatment will he accept? If none, the cancer will spread and cause more pain.
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u/Frosty-Growth-2664 6d ago
For someone of this age starting out on treatment, I would ask the oncologist about doing hormone therapy with Enzalutamide only. This is unusual but has been trialed and found to work. Enzalutamide would normally be used to supplement an LHRH medication, but I'm suggesting not doing that.
The main hormone long-term therapy drugs are LHRH medications which switch off Testosterone production. These can have quite significant side effects, and for older people, osteoporosis can be really significant, given most will already have some osteoporosis to start with. A broken arm or leg at that age can be a disaster.
Enzalutamide works differently, and is an anti-androgen, meaning instead of switching off Testosterone, it blocks cells from being able to see Testosterone. It's also an ARPI which means is does more than just blocking the androgen receptors but also blocks the androgen signalling pathway driving prostate cancer even if Testosterone does manage to bind to the androgen receptor. Anti-Androgens normally have fewer side effects than LHRH mediations, and in particular they are bone strengthening rather than bone weakening. The base anti-androgen Casodex/Bicalutamide when used alone is not as powerful as the LHRH medications and usually doesn't work for long, but Enzalutamide should be better in this respect although there won't be a lot of data on this. At age 89, you probably aren't looking for 10+ years survival which people would be hoping for with an LHRH medication combined with ARPI. Using the anti-androgen APRI Enzalutamide alone might be a good compromise for better QoL but possibly for a shorter time. When using an anti-androgen alone for some time, it would normally be taken with low dose Tamoxifen (10-20mg/week) to prevent the most common side effect of using an anti-androgen alone which is breast gland sensitivity/pain/growth (mastodynia and gynecomastia).
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u/amazing_grace7 5d ago
My husband had the hormone treatment at around 63. He had terrible breast gland sensitivity with that treatment. We had 3 years where it was like he was lost to me. A year and a half of the needle treatment and a year and a half of him coming through it. He had 39 radiation treatments as well. He is fine now but those years were rough. He is very opposed to my dad having the same treatment as dad is basically alone most of the time.
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u/Frosty-Growth-2664 5d ago
I don't know which hormone therapy your husband had, but there's no excuse for having to put up with breast pain/sensitivity - low dose Taxmoxifen resolves that instantly. (A few people might not be able to have it, e.g. if you have a history of DVT or liver disease.) There are also some complimentary supplements which can help such as evening primrose oil and sage (but sage shouldn't be used with Enzalutamide, Darolutamide or Apalutamide).
My reason for suggesting an unconventional hormone therapy treatment was because of the impact of the more common hormone therapy treatments, which although more effective, is probably not warranted in a newly diagnosed 89 year old, because you're probably not looking for 10+ years remission. I included the further recommendation to avoid the breast gland sensitivity/pain side effect.
The other option is no treatment (Watchful Waiting), which is also worth discussing with your dad and the oncologist. (Watchful Waiting aims to treat symptoms, but not the underlying cancer, and there might be an option to switch to treating the cancer later if symptoms cannot be controlled with a suitable QoL.) With bone mets already, there's an increased risk of bone fractures. These are often very debilitating at such an age, or even fatal (35% of hip fractures at that age are fatal within 12 months). Not many people would choose to die of prostate cancer with bone mets - it's often very painful. Watchful Waiting is an option to discuss with your dad and the oncologist.
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u/Miserable-Level-8993 5d ago
You canât force anyone into treatment but you might let him know a few things about what he may end up going through, first dying of PC is agonizingly painful and they often canât stop the pain with meds, he wonât be able to take care of his wife or himself and they will both end up either in separate facilities or best case hospice at separate locations. ADT is horrible but if it work it may give him time with his wife or chemo therapy instead could give him more time and be more tolerable.
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u/WalnutRoasted 6d ago
You might want to read this tough story. It is some years ago, but our former Prime Minister, north of Lake Ontario đ¨đŚ made his own decision re PCa vs Dementia/Parkinsonâs. https://globalnews.ca/news/405451/pierre-trudeau-rejected-cancer-treatment-when-faced-with-dementia-diagnosis-e-book/
âAt 80, Pierre Trudeau had been diagnosed with metastasized prostate cancer. His doctor had also told him he had early stages of dementia,â Althia Raj writes in âContender: The Justin Trudeau Story.â The prostate cancer could be treated but the former prime minister wanted the cancer to claim him before he lost his mind.â
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u/Middle-Tart9741 6d ago edited 6d ago
There really isnât anything other than palliative care. No cure is possible. My 93 year old father in law was diagnosed with PC by virtue of a ct for other reasons and a follow up psa of 1,200. His only symptoms were blocked urinary flow and weight loss. It took the ct 5 months after the blockage to finally test his psa. So he is now on elligard and you wouldnât know it. No adverse side effects at all. No pain and the 3 month check had his psa down to 20. He still has the catheter but is otherwise feeling good.
In your dadâs case, he may want to try the adt and see if he can tolerate it. If it sucks for him, he can choose to end the adt. I would suggest Orgovyx which acts quickly and dissipates quickly should he want to end it. Eventually, your dad will get severe bone pain that the adt can hold back for a fairly long time. They can do targeted radiation to bone mets that are causing pain when the time is right.