Turning a Corner

Exactly 6 months ago, we got the Gleason 9 diagnosis. I swear I have PTSD from the way the news was delivered...

But I'm happy to say I think we are turning a corner as far as outlook. My husband tolerated the radiation (HDR-BT and 25 IMRT sessions) remarkably well. The RO managing his IMRT told us he was definitely on the low end of the SE profile. He's definitely needed Flomax and he's had some urgency, but he's worked through all of it and felt pretty decent throughout, really not letting the therapy interfere too much with normal daily life.

After radiation ended, we started feeling uneasy about who would manage things going forward. The RO's we worked with were kind of done with us other than 1 more follow up. Our RO at St. Joe's doesn't oversee HT, and expected we'd see an MO for that. The MO we had been seeing was rubbing us both the wrong way (cavalier about side effects and toxicity management).

At the outset of this whole journey, we met with Dr. Chris King at UCLA, thinking his SBRT trial might be good for us. Dr. King felt the triple play was a better choice, but he was too far for us to do 25 sessions there...this doctor has still personally fielded several calls to answer our question. Today, my husband asked him if HE would handle his follow up care. Dr. King welcomed him as a patient, despite not being the deliverer of his radiation therapy.

It probably sounds silly, but Dr. King is the guy with whom we both felt safest. The fact that he's going to manage things going forward makes me feel like we are going to be ok.

Not silly at all. You will have a long, long relationship with him and it only makes sense to choose someone you both feel good about.

Thanks for the update - glad it is going well! The urgency should get better over time. After my RT ended, it took just a few weeks to get back to nearly normal. I still had a little night-time urgency for a very long time afterward, but that has resolved too.

The ADT isn't easy, but the time will go by.

Yes, that's what we were thinking - it's worth the drive up there for occasional visits; we just hadn't realized it was an option for him to manage the case if he didn't provide the radiation itself.

Interestingly, he's leaning toward a shorter course of ADT. Hubby's last Lupron shot will get him to 7 months, and Drs King and Rettig (an MO at UCLA) both are in agreement that no more Lupron is reasonable (or if my husband feels safer stretching it to the 9-12 month range, that's OK too but not markedly better). I don't think I've seen any G9 guys on here who've had courses of ADT that short (18 months seems minimum on here for G9).

I'm glad your husband is following his intuition to ask Dr King. What an excellent doctor, he's both technical and empathetic. about nine months after I finished SBRT with him, my wife needed more detailed imaging for a breast tumor at UCLA's Santa Monica breast center near his office. After she finished we went for lunch at our regular cafe just around the corner from his office. As luck would have it Dr King was in line and recognized us. He asked what we were doing there today, so I told him my wife was starting the process for DCIS treatment. He decided to sit down with us, and gave his thoughts on what to consider and who to see in the UCLA system. After he left I nearly broke down in tears thinking how fortunate I was to have been recommended to him and chosen his treatment plan, and now getting critical advice for my wife. (Thanks again TA for suggesting the initial consultation with Dr King!). Best of luck continuing on your path.

Jim

I too am a patient of Dr King, and couldn't be happier with my treatment. Although I don't require office visits right now Dr King has always answered emails within hours and made referrals within UCLA for me if I asked. And yes, thanks to TA for the original mention of Dr King when I was exploring options.

Dear WifeofPie, that is such a great update. Isn't it such a huge relief to find a medico you feel you can trust? Like you, we both suffered PTSD from the delivery of the news, which was blunt, brutal and completely un-sympathetic. That's when we took ourselves off and found another guy. At that stage neither of us even had any notion there were different types of tx for PCa - oh how much we have learned since that time!
I wish you and your DH the best (with the best!) going forward. Sounds like you are absolutely on the right path. Well done.