Full Diagnosis :-(

I wrote a couple of weeks ago about my husband having a PSA of 6006.
We now have the full diagnosis :

PSA originally 6006 then up to 6700 week later.
Gleason score 9 (4+5)
Spread to lymph nodes, ribs, spine and pelvis.
Hormone treatment to continue and they have suggested chemo to start in about 4 weeks.
Obviously it is a horrible prognosis and not sure what else to say but any thoughts very welcome. x

We live in the UK.
My husband is 62. He had no other health issues other than this apart from a back issue with a bulging disc which we now think has masked bone cancer pain.

Was this his initial PSA?

Mel

Hello Mel yes 6006 was the initial PSA as he hadn't had any earlier tests.
He had asked about testing at GP surgery but as he had no symptoms they said it wasn't recommended :-(

Hi Sallyy-
I am so sorry you and your husband need to be here. There is a lot of learning and coping in your future, and this is a good place to help you do that.

the initial diagnosis of metastatic PCa is relatively rare in the PCa world, but many others with that burden (like me) are also on this forum. The concept of cure is generally not associated with this condition, so time and quality of life become a focus. Having said that, there are very powerful tools to fight the early stages of this disease.

Your husband has started hormone treatment (also known as ADT). Over 90% of PCa patients respond to ADT, and the initial response can be dramatic. You should see rapid decrease in PSA over the next few months, as PCa cells are triggered to undergo self-directed cell death pathways- lymph nodes will shrink, metastases will decrease or go away, symptoms will disappear (although he has none at this point). In a few weeks, chemo will start- this will also cause further decrease in PSA, and should assist in reducing tumor burden throughout the body. I wish I could tell you not to obsess on the PSA numbers, But I cannot do that myself- and PSA is currently the most used proxy for the extent of most early PCa (some forms of PCa do not release PSA). Accordingly, watch the PSA as it drops- as long as it is going down and stays low, you are gaining more time.

Early chemo has been shown to give substantial benefit for patients with high-volume tumor burden on diagnosis, as your husband. You can look up summaries of the CHAARTED and STAMPEDE trials to get a sense of this benefit.

There is a thread titled "Taxotere Side Effects" on this forum. There you will find great advice, mostly from ISU-Cyclone Fan, on how to best cope with the chemo.

After the chemo cycles and four months or so of ADT, the PCa disease should be "contained" to a degree to use a term my research doc spoke. How long this period lasts is hard to say, can be shorter with higher Gleason score cancers according to my MO, but that chemo may give you some extension in this phase. The dogma is that EVERYBODY with a metastatic condition eventually develops castrate-resistant PCa over time, 1.5-2 years being the usually stated median. At this stage, some of the PCa cells have mutated and are producing PSA again even though testosterone production is still blocked by ADT. The PSA will start going up at this point, or symptoms due to metastases may be first evidence of this stage.

At that point, second and third line therapies can be applied.
Those are worries best put off for another year. Yes, I said year. There can be multiple of those going forward.

It is important to know that there are so many clinical trials for PCa in play right now, and the treatment landscape can change quite a bit over the next few years. Many in the field speak of converting PCa to a chronic and stable disease some day.

Right now, you are doing standard of care for new metastatic PCa (ADT + chemo). This is exactly what you should be doing. Fight through the chemo, put up with the ADT, and keep learning. Anything additional would likely fall into the clinical trial category. You may be able to access something in UK.

I hope you and your husband find time to get out and enjoy the day. It is far too easy to become weighed down by such a prognosis and let these best days of those we have left slip by, unappreciated in their splendor until the days to come make us long for them. Remember that it will be a long run.

I wish I could be more positive, but I am emotionally tired these days- it comes and goes.

here's to fightin'

rf

Hello Sallyyy....I`m just another in between little guy here on the forum with my own set of nasty circumstances....we are all in this together ....sending you the hope of Peace , Love ,and Harmony across the ocean.....David