Genetic testing and Second Opinion – A result!

[Benkaymel]

Following on from my post last week about docetaxel not working, I had a frank conversation with my MO during which I said I strongly believe that genetic testing of my liver biopsy sample should be the next step and after some debate, to my surprise, he agreed and has put through the request. It’s still somewhat frustrating that he didn’t come up with this himself though. I’m also going to self-fund a liquid biopsy with Guardant360 (£1450) which he will facilitate. He has also referred me for cabazitaxel but that will depend on whether my liver function blood tests improve. If they don’t, the only thing left on the NHS is carboplatin which apparently doesn’t need good liver functions.

I suggested a list of other possible treatments for the liver mets including SBRT, SIRT and ablation. He said that the mets were too extensive for trying any of those which suggests they must have progressed an awful lot in a short period of time.

He also realised that I wasn’t entirely happy with his performance so far and suggested I may want to get a second opinion which of course I’ve been considering so I said yes please. I requested Professor DeBono at the Royal Marsden and he agreed to put in the request for the second opinion.

All in all a good discussion with some positive results at last. I now need to wait and see if the genetic tests show up anything and have a consultation with Professor DeBono.

[Tall_Allen]

Histology and IHC may be more fruitful than genomics.

[NickJoy]

Thank you for the update. It is a big help to those of us trying to understand the UK system. I hope you get DeBono. Best of luck.

[Benkaymel in reply to NickJoy]

Thanks Nick.

[Proflac]

Great. That's real progress and you must feel better taking control. De Bono is the tops. Maybe you could ask him about TAs suggestion of Histology? Hope you don't have to wait too long. Best wishes.

[Benkaymel]

Thanks, yes I think IHC is more important so I will ask. I also hope I don't have to wait too long as I don't feel like I've got long left TBH ☹️

[Cateydid]

good on you for advocating for yourself!!! I learned a long time ago that the doctor has many patients to see: I only care about my Joe, so I’ll take the time to do all the digging to find the latest and greatest options.

Joe’s onc said he was thrilled with Joe’s test results. I said, “Really? I read the report that says his lung is still collapsed and that it’s still holding some pneumonia.” He agreed to refer us to a pulmonologist. In November Joe had that lung stretched and attached to his chest wall. He’s no longer on oxygen, and has started walking/jogging a little bit…..on his way back to a healthier version of himself…..so he can keep fighting Pca .

I’m just happy to have an onc who doesn’t shame me too much for coming in like I know more than he does….when I do.

Keep showing up for you!

[Benkaymel in reply to Cateydid]

Thanks, that's exactly how I feel - that having been on this forum for a year, I know more about PCa than my MO does. At least I won't feel like that with Professor DeBono!

[Kevinski65 in reply to Benkaymel]

I’m a bit confused, did Xtandi stop working? Or did the liver Mets cause you to drop it?

[Benkaymel]

Both. The liver mets appeared so it was not working.

[Ian99]

Sorry lost track of email. News looks encouraging. Hope you’re doing well.