Cancer spread, genetic testing showed no mutations. more optimistic?

Posted by canadaanne @canadaanne, 2 days ago

My husbands genetic testing came back and shows no mutations.
He is stage 4 with spread to nodes, spine, bones. He has done 3 of 6 chemos (triple therapy of Docetaxel, Orgovyx, and Darolutamide) and had radiation on a spine metastasis.
He’s responded well to the treatments, although not without side effects such as muscle, joint, and bone aches/pains for days after chemo and fatigue etc. that seem to be more pronounced after each treatment (cumulative effect).
I’m encouraged by the news that there are no genetic mutations, but how big of a difference does it make?

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well the good news is genetically speaking, he does not appear to have genetic link to prostate cancer which makes recurrences a bit less likely. Also, the fact that your husband has responded well to early treatment is a positive prognostic indicator.

His Gleason score, PSA level and age and health status all come into play. A man who is physically fit and active without other chronic disease factors who is reponding well to the triplet therapy shows realistic control over his disease is attainable. Since he has distant metastis, a cure is prob not a realistic expectation right now, but survival rate is prob improving nicely.

His fatigue is very normal from all his treatments- ADT, Chemo and radiation...so eating good food, restful sleep and good daily exercise will help him thru this phase. Stay hopefu, positive, eat good food, exercise..take your medicine and make all appointments !

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Having genetic issues can mean very little when he has such an aggressive case of prostate cancer.

In some cases, some of the drugs, like the ones he’s on, don’t work as well if you have certain genetic problems.

If you have the genetic problem of BRCA then you can also use the PARP Inhibitor, Something that doesn’t work well with almost every other genetic issue.

Hopefully the chemo and drugs will make a big difference in the long run.

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I want to give two answers here (as a layperson/non-expert):

1. Having the BRCA mutations isn't catastropic: as @jeffmarc has pointed out, oncologists have effective tools for managing PCa with those mutations now.

2. But still, that's great news for your husband. Not having the BRCA mutations means the cancer has less genomic instability, and is less likely to develop features of the (very rare) neuroendocrine variety of prostate cancer (NEPC), which requires more aggressive and urgent treatment. (The primary drivers for NEPC are low or absent TP53 and RB1 — your husband may or may not have been tested for those, because they can change over time.)

So yes, it's definitely time to celebrate! 🎉 Every bit of good news is cause for celebration in prostate-cancer land, and this is an important one.

But for others reading this who do have the BRCA mutations and/or NEPC, don't get discouraged: new research and treatments are a rising tide, and as the saying goes, a rising tide floats all boats (including yours). The outlook is improving for all of us.

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Profile picture for northoftheborder @northoftheborder

I want to give two answers here (as a layperson/non-expert):

1. Having the BRCA mutations isn't catastropic: as @jeffmarc has pointed out, oncologists have effective tools for managing PCa with those mutations now.

2. But still, that's great news for your husband. Not having the BRCA mutations means the cancer has less genomic instability, and is less likely to develop features of the (very rare) neuroendocrine variety of prostate cancer (NEPC), which requires more aggressive and urgent treatment. (The primary drivers for NEPC are low or absent TP53 and RB1 — your husband may or may not have been tested for those, because they can change over time.)

So yes, it's definitely time to celebrate! 🎉 Every bit of good news is cause for celebration in prostate-cancer land, and this is an important one.

But for others reading this who do have the BRCA mutations and/or NEPC, don't get discouraged: new research and treatments are a rising tide, and as the saying goes, a rising tide floats all boats (including yours). The outlook is improving for all of us.

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@northoftheborder
I’ll take every bit of good news we can get right now!

1/2 way through chemo - nuclear scan and CT today. Hoping for some more positive news along this journey.

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Profile picture for canadaanne @canadaanne

@northoftheborder
I’ll take every bit of good news we can get right now!

1/2 way through chemo - nuclear scan and CT today. Hoping for some more positive news along this journey.

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@canadaanne Let's talk about something positive. I know eating might be hard for him right now, but most chemo patients I've known have at least one special treat they still enjoy. What is his? ❤️

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