First Oncologist visit

[Goodwife]

My husband and i saw the oncologist today at the recommendation of his urologist My 57 yo husband had a PSA of 5.3, which was an increase. His biopsy yielded 2 of 12 sites positive for malignant, aggressive cancer. The sites are located towards the bottom and edge of the prostate. The Gleason scores were 7 and 9. Bone scan and abdominal MRI were clear.

The oncologist’s opinion is for my husband to start the hormone suppressing tx and then have radiation My husband would be on the hormone tx for 2-3 years. Without any tx, his life expectancy is 15 years without tx. But of course he would develop complications. My husband is in shock at the idea of no sexual ability, and the possibility of incontinence. The therapy recommended was based on a scoring system developed by Sloan Kettering. Is anyone familiar with this? Thank you.

[Tall_Allen]

You should talk to a radiation oncologist that is expert at brachytherapy boost therapy (a medical oncologist just wouldn't know that much about it). I think Jeff Michalski at Siteman might be a good place to start. I'm not sure if he does brachytherapy, but he could refer you to someone who does in the St Louis area. Brachy boost means that external beam radiation (in about 25 treatments over 5 weeks) is supplemented by a brachytherapy boost to the prostate. There are two kinds of brachytherapy (high dose rate (HDR) and low dose rate (LDR)). I think HDR has a lower side effect profile, in both urinary and sexual side effects, but practitioners are harder to find. They both have excellent cure rates - about 85% for high risk men. Unless your husband has a large prostate, he may not need any ADT at all, especially with HDR brachy boost.

Incontinence is a very rare side effect of primary radiation. The opposite problem (urinary retention) is more common, and can be controlled with an alpha blocker like Flomax. It is usually transient and goes away when the inflammation goes down. Sometimes, there is some irritation and dribbling in the first few weeks, but that's about it. Here's a list of possible side effects and how often they occur:

pcnrv.blogspot.com/2016/08/...

[Goodwife in reply to Tall_Allen]

Thank you. My husband’s cousin had his prostate treated my that same Dr. I will try to get in to see him. He is very busy but i feel that we have time to wait for an appointment

[Tall_Allen in reply to Goodwife]

One advantage of starting ADT now, even if it's just 50 mg Casodex per day, is that it will stop progression for now and may give you peace of mind while you wait.

[Goodwife in reply to Tall_Allen]

Interesting. So if he did start it now as a precaution would it inhibit or destroy sexual function either temporarily or permanently ? Thank you!

[Tall_Allen in reply to Goodwife]

It diminishes libido, not erectile function. It's hard, but not impossible, to achieve an erection without libido. There's always trimix. It is temporary, until testosterone levels recover.

[Goodwife in reply to Tall_Allen]

Did you mention a Dr Epstein? I remember that name being recommended and I think it was associated with Sloan Kettering I'm having trouble going back and fnding my old posts and replies

[farmanerd in reply to Goodwife]

My wife and I had a very good and fairly lengthy conversation with Dr. Michalski when we consulted him for a second opinion on RT. I was post-RP, so we didn't discuss brachy. He even said that for my situation, my RO at Pratt would do just as well as him on my treatment -- both a compliment to him and to my RO. He would definitely give you good advice for treatment for your husband.

[farmanerd in reply to farmanerd]

Forgot to add that Dr. Michalski stated that he would handle any ADT that would be concurrent with radiation -- so that you can be prepared for your conversation with him. [EDIT: Appointment was approximately three weeks after initial call]

[Goodwife in reply to farmanerd]

Thank you. We have heard that he is very very busy

[tkalaf in reply to Goodwife]

Early in my journey, I switched from my original urologist (referred to by my PCP) to another. I obtained a referral to him (insurance purposes), yet found him booked out 6 months. ):

What I did then is to reconnect to his rescheduling team, asking them to again triage my Dx (from PCP and original urologist) and reconsider an earlier appt. This proactive step on my part worked.

I was granted an appt. in 3 weeks! Once I had my initial office visit where he confirmed my Dx, I became his patient and my treatment schedule was (biopsy, scans, and on) was timely. Looking back, I'm so happy I did this. I guess what I'm saying is, its' good to be proactive in this battle. Good luck!

[Longterm101 in reply to Tall_Allen]

I’m using Eric Horowitz at Foxchase for HDR Brachy and really like him

He’s been very attentive!

[timotur in reply to Tall_Allen]

I had HDR Brachy with Dr Chang at UCLA last week— no IC, flow issues, burning urination, or dripping. Didn’t need pain pills, Flomax, or any other drugs post-op. Only slight complication is I can’t ride a bike with a SpaceOar implant, but can still run and play other sports. I recommend it as an option.

[Goodwife in reply to timotur]

Were you considered high risk? What was your Gleason score/s?

[timotur in reply to Goodwife]

Yes, as in my profile, I am high risk, p3bN1M0 +SV GL 7 (3+4). Prior to ADT, Ga-68 PSMA scan was negative for bone mets but id'd one LN. Started neo-adjunctive, triple-blockade ADT with Zytiga/Pred+Lupron+Casodex two months prior to HDR Brachy, and will continue with 5wks EBRT to the pelvis next week. This was my best option as a high-risk patient with SV/LN involvement.

[Goodwife in reply to Tall_Allen]

I am very concerned I just read a post that stated the men with a Gleason score of 9 or 10 have only a 10 year survival rate. I know enough to not believe everything I read online How do I know if this is true? Also, the oncologist we saw was a radiation oncologist, its all he does. He has an independent center where he sees patients and provides the radiation He is located in St Louis, MO I am currently trying to get an appointment with Dr Jeff Michalski, at Siteman Any other places or Drs you can suggest? Thank you

[Tall_Allen in reply to Goodwife]

If I spent time correcting all the misinformation I read on this site, I wouldn't have time to deal with patient's concerns. The peril of collecting info from the internet is that you have to decide what is credible and what isn't. There are two questions the empowered patient (and caregiver) must ask:

(1) is the source credible? i.e., does it come from a published peer-reviewed journal? If it comes from a commercial source, you should be skeptical.

(2) what "level of evidence" is being offered? i.e., Dr opinions and lab/mouse studies are the lowest level of evidence and can safely be ignored by patients; large randomized clinical trial are the highest level of evidence, especially if confirmed (level 1a) and should never be ignored.

If you can travel beyond the StL area, Alvaro Martinez in Detroit is one of the pioneers of HDR brachy.

[Goodwife in reply to Tall_Allen]

Thank you. I feel as if I’ve gone down the rabbit hole. I’m going to take a break from reading for a bit. Except for some books that I have purchased that are from credible sources Thank you for your support.

[Tall_Allen in reply to Goodwife]

I never recommend books - they are either out of date by the time they are published, or they reflect the biases of the author. I think you are better off with the links I gave you for PCF and NCCN - they are up-to-date and represent the consensus of many top doctors.

[Goodwife in reply to Tall_Allen]

Ok. Great to know. Could you send me the links again please? I’m having trouble finding the old posts

[Tall_Allen in reply to Goodwife]

Click on your name and it will show you your two threads

[j-o-h-n in reply to Goodwife]

"I just read a post that stated the men with a Gleason score of 9 or 10 have only a 10 year survival rate."

FAKE NEWS....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/14/2019 7:38 PM DST

[monte1111 in reply to j-o-h-n]

Misinformation on this site, out of date books, FAKE NEWS. I miss you Carrot Top.

[j-o-h-n in reply to monte1111]

I miss you too Hillary....

youtube.com/watch?v=uq-gYOr...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/15/2019 8:17 PM DST

[Fairwind]

Pick up a copy of Dr. Pat Walsh's book, "Surviving Prostate cancer, 3rd edition, and read it. Then you will have the background you will need to navigate this journey.. Yes, it's a little dated, but the basics are there and that's what you need to learn..Ta's advice about talking with an RO who does brachy is excellent..

[407ca]

You need to take some time to read and learn of treatment options. Most here will tell you of what they know, which is usually what they have done themselves. Get second opinions and learn all you can from those who can help. Avoid rushing into treatment without knowing the pitfalls of all treatment forms.

All the best.

[j-o-h-n in reply to 407ca]

I'm gonna mimeograph your post...it's on target...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/14/2019 7:41 PM DST

[monte1111 in reply to j-o-h-n]

That's what we need: humor and a mime routine.

[j-o-h-n in reply to monte1111]

watch this .....using by stand in mime-ograph...

The great Marcel Marceau doing his moves in his silk lined casket.....

Great? And his hands never left his body...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/15/2019 8:24 PM DST