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metasized prostate cancer

Prostate Cancer | Last Active: 6 days ago | Replies (12)

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@kujhawk1978

As others have said, those of us who have peeked behind the door of death by prostate cancer (PCa) say no thanx.

The question is then, what to do.

From the clinical data you describe, your husband has advanced PCa. There are guidelines that are based on the science, which may serve as a starting point for you, your husband and medical team to discuss treatment choices. The NCCN - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459 and AUA - https://www.auanet.org/guidelines-and-quality/guidelines/oncology-guidelines/prostate-cancer are two examples.

Understand you have joined a club, albeit not of your choice, with its own language, terms and definitions. You'll need to learn them - Gleason Score, Grade Group, PSA Doubling and Velocity Times, Genomic Testing, Decipher Tests, Androgen Deprivation Therapy, Androgen Receptor Inhibitor...to have the necessary conversations with your medical team, The time available during consults is often short, you don't want to waste it asking to explain the basic terms!

You'll need to assemble a multi-disciplinary team, urologist, radiologist, oncologist and supporting allied health specialists.

Depending on you and your husband's patient style, one of them may function as the coordinator, integrator of his treatment and care. I don't want to disappoint you but likely that coordination and integration function will default to you two, just the way medicine seems to be, they are busy people.

There are organizations with valuable resources, the Prostate Cancer Foundation is one - https://www.pcf.org/ there are others, PCRI - https://pcri.org/

There are online forums such as this one where fellow club members share their experience and layman's understanding.

Some of the treatment choices may be:

Doublet therapy - ADT + ARI
Triplet therapy - ADT + ARI + Chemotherapy
Radiation may be in play
Some say take out the mother ship, the prostate in these cases.

Obviously, discuss with your medical team.

Your husband is certainly entitled to his pity party, the diagnosis is shocking and overwhelming initially, most, if not all on this forum can describe the moment they got the news. It may be time to put that aside and figure out the way ahead.

Honestly, there are no treatment options without side effects. There are mitigating strategies, some of which you two can control, diet, exercise, managing stress, attitude. Others your medical team has solutions though you may have to ask - hot flashes is an example, erectile disfunction another!

I was diagnosed in January 2014, the 23rd to be exact. I still recall the shock of that call, the words of my urologist, "Kevin, that's a pretty aggressive cancer," and his comment to the scheduling nurse, "Kevin is "NDC" which when I asked, was part of the new language I was learning, "Newly Diagnosed Cancer!" Yep, I had my pity party, then I set about figuring things out.

Yet, 11+ years later, here I am. The treatment choices in 2014 were pretty much binary, surgery, radiation. Thanx to medical research, there are a plethora of choices today. That's the good news, the contrary to that is there is no one "right" decision, there are good choices based on clinical data - GS, GG, Decipher Test, Genomic Markers...and personal preferences.

His treatment may or may not be continuous. Given my clinical history, some say I should be on continuous history. Yet, only three of the 11+ years have been on treatment. Honestly, the only real difference on versus off has been in my life is how I feel living my life. It has not interfered with taking vacation, celebrating life's milestones, working...

Finally, keep in mind statistics. They are often historical, and population based. They may not apply to your husband's specific clinical data. Also keep in mind the Bell Curve, mean, mode, average, standard deviations...as an example, with ADT, most men lose their libido, some statistics say 80% or so. That means 20% or so don't. I was in the latter, many on this forum were in the former.

Please come back and inform thè members on this forum about your discussions with his medical team, we are always available to share our experience and understanding as patients.

Kevin

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Replies to "As others have said, those of us who have peeked behind the door of death by..."

@kujhawk1978 ,
Hi Kevin, looking at your history, how was your experience on Taxotere?
Were the side effects bad? Were you able to work?