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Posted 6/27/2017 11:08 PM (GMT 0)
husband is age 54

6/2017 PSA 130 (first one)
6/2017 DRE- Abnormality Detected
6/2017 Biopsy 11/12 positive Gleason score 9 (sample 11 said Indicates Perineural Invasion)
6/2017 Bone Scan-negative
6/2017 CT scan- possible spot on the spine
6/2017 MRI to confirm spot-haven't heard back yet.
6/2017 HT Started-Firmagon

The doctor said it has spread to Seminal Vesicle. I have done so much research but now I am just feeling overwhelmed. What will his treatment be? Will it need to be started right away? It is so hard not having any kind of treatment plan yet. What should we do next? We have his records being sent to Fred Hutchinson and also OHSU.

Post Edited (Maxamillion) : 6/27/2017 5:15:35 PM (GMT-6)

Posted 6/27/2017 11:26 PM (GMT 0)
First off, don't panic! There are lots of G9 participants here, he will need to get started on therapy pretty quickly. My guess is your Docs will suggest hormone therapy followed with some sort of radiation. More intelligent minds will be chiming in shortly.
Posted 6/27/2017 11:31 PM (GMT 0)
He has already had his first shot. They gave him Firmagon
Posted 6/27/2017 11:55 PM (GMT 0)
Yes, sorry. I just figured that out. The Firmagon will 'starve' the cancer cells, then I assume he will be a candidate for some variety of radiation.
Posted 6/27/2017 11:56 PM (GMT 0)
Hi Maxamillion

I am a Gleason 9 with bone and lung mets. Once diagnosed I started right away on Lupron ( HT ) then had radiation to the one hip which it is in.
After that came Docetaxel ( Chemo ) 6 times 3 weeks apart. I was also put on Zometa to strengthen my bones.

It is very hard not to panic but take some deep breaths and talk it through with each other all the treatments suggested and what the others say from here and you will be fine.
Posted 6/27/2017 11:57 PM (GMT 0)
Welcome to HW, sorry you need to be here.

The G9 crew will be along soon with better info. The Firmagon, HT, is his first treatment. That should go a long way towards reducing the PSA. Likely they'll retest that in a couple of months to see if it's working.

Next is collecting all the tests and getting to the right doctors. Generally, in the advanced cases, HT and chemo are the main treatments. Sometimes spot radiation is used for mets.

Your first job is to learn all you can about this thing. Check out the sticky threads at the top of the forum and ask all the questions you have.

Hang in there,
Andrew
Posted 6/28/2017 2:46 AM (GMT 0)
Fred Hutchinson is certainly among the best in the country, and, if that metastasis is confirmed, Celestia Higano is among the best of the best. The surest way to know if the spinal lesion a metastasis is if the Firmagon shrinks it. Diagnosing any metastases is an important first step. The outcome will dictate which kind of doctor you see next and which therapies are most appropriate. The Firmagon gives you time too. It will stop any progression for now, and give you time to talk to those doctors before deciding on next steps.
Posted 6/28/2017 4:18 AM (GMT 0)
Is there anyone that can explain to me why they don't do surgery to remove the prostate if it has spread? Or do they? Would it be unusual that it would have only spread to the seminal vesicle and not to his bones?
Posted 6/28/2017 4:43 AM (GMT 0)
I can help you with that. The answer is that there is no answer yet. Certainly, after mets are detected, there is no hope the cancer can be cured by removal of the prostate, either surgically or by radiation. Once it is detectably metastatic, there are probably thousands of micrometastases, too small to detect, everywhere. But the question is: can surgery or radiation to the primary source of all those metastases (called "de-bulking" or "cytoreduction") at least slow it down? There is some early indication that it might, but the data is not yet reliable and the toxicity costs are high. It is a subject of some clinical trials. This is discussed in the following articles:

/pcnrv.blogspot.com/2016/08/is-prostate-specific-radiation-still-of.html
/pcnrv.blogspot.com/2016/08/is-prostate-radiation-still-of-any.html

The other consideration is whether insurance will pay for an experimental procedure.
Posted 6/28/2017 10:18 AM (GMT 0)
Maxamillion-

First of all, we're all very sorry to have to meet you under these circumstances. You're in a tough space, to be sure. The good news is, that if he is confirmed as metastatic, there is every chance that his case can be managed for many years to come. This is not a death sentence, not by a long shot.

You're doing the right moves already. You've started on HT, which will stop it in it's tracks. You've reached out to one of the experts for evaluation and treatment. And you've reached out for support here. I can't add to what has already been said, hang in there. What he needs from you, his wife, more than anything is your support. The HT will take a toll on him. He will wonder if he's still a man as his testosterone falls to zero. Go places, do enjoyable things. Celebrate life!
Posted 6/28/2017 4:10 PM (GMT 0)
Hi!

Another crazy G9 wife here. Mainly posting so you can take a look at my DH's stats below. He was diagnosed almost three years ago and is still working (part time).

Hang in there, you're in for a long slog whether he is diagnosed metastatic or not. For us, the hormone therapy has been the cause of first, months and months of effective cancer fighting on its own, but also, most of what has made Dave feel sick, at least until recently.

Note that Dave didn't have chemo, but with the data we have now, in hindsight, I would have liked to see him do it early on.

--Carolyn
Posted 6/28/2017 6:44 PM (GMT 0)
Maxamillion:

It's not at all unusual for gleason 9 PCa to spread to the seminal vesicles (SV) and not to the bone. After all, the SV are attached to the prostate and a natural place for PCa to spread first. I'm just another G9er, but I don't understand how you know it has spread to the SV without having had the prostate and SV removed. Were the SVs biopsied? My PCa did not spread to bone until nearly four years after it was found in the SV at pathology. The goal is to keep it from spreading to distant sites as long as possible. It's not curable once it has spread but it can be beaten back sort of like a wild fire.

Bob
Posted 6/28/2017 8:25 PM (GMT 0)
Welcome!

You've found a great source of encouragement and support here. Another wife of a G9. Since initial tests showed my husband's cancer had not metastasized he had his prostate removed. His PSA did not go to undetectable so he ended up having salvage radiation anyway. He is now on hormone treatment and his PSA is undetectable. As Carolyn said, it's a long slog.

Two things that I think have helped mitigate the side effects of hormone therapy for my husband are a radical change in diet and daily exercise. The diet has kept his weight down and helps maintain heart health, and the exercise seems to help with fatigue. He goes to the gym almost every day and then does work around the yard/house for much of the day. I would guess he is active from 9am-3pm most days.

You will know more when you meet with your doctor and you'll feel better when you have a plan of action. There are a lot of ups and downs with this disease, so make sure to take care of yourself too.

Chris
Posted 6/28/2017 10:48 PM (GMT 0)
You might consider looking into clinical trials that would be good for you. I ask Tall Allen and he told me DynaMO would be good for me.

The most advanced and the latest treatments are in clinical trials.

I am qualified for--- A Dynamic Allocation Modular Sequential Trial of Approved and Promising Therapies in Men With Metastatic Castrate Resistant Prostate Cancer (DynaMO). After my initial work up I had Provenge treatment last year before starting the trial; it expectantly made my scans stabilize and my PSA dropped. So I won't begin the trial until my cancer starts to advance again. To qualify your scans must show new metastasis or your PSA rises.


Larry
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