The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Hi carattop. Sorry to hear of your husband's diagnosis, but glad you found us.

I've added you to the roster under the 5+4 group. There aren't a lot of us around, and it is a serious diagnosis. If you've been googling much, you may have become rather freaked out. Keep in mind a lot of the info you find on the internet is rather outdated. Watch the dates of any studies you find, look for details.

There has been a lot of progress in the last few years, with the type and timing of radiation and hormone therapy under almost continuous updates.

There are a number of us G9 folks on the forum, and we're here to answer questions you may have. Most of us are still doing rather well, so please be encouraged. It's frightening for sure, and it's worse when one is diagnosed so young. But still, there is good reason for hope. Treatments can quiet this beast down for many years!

Hello Mr. Naples...You are doing great ! Keep up the walking, it really helps..Are you still on ADT (Lupron)?

Don,
That's the sort of thing we all like to hear. Congrats and many, many more years being undetectable. Hang around and keep us up to date.

Carottop,

Welcome to Healing Well. Great place for support and info.

I can relate to the young age and higher Gleason, but hang in there...I was 44. For me, it's been an interesting ride but doing good 8 years later.

Once you get a plan things will calm down..

If you ever want to talk, please feel free to email me.

Jerry L.

Aintgottimeforthis...the clean scans are definitely good news, that means you have a shot at a total cure.
Your stats are similar to my husband's diagnosis early this year.
You have research to do of course, but make sure you look into the "triple play"...HDR brachytherapy + IMRT + Hormone Therapy.
It's a combination of systemic treatment (the hormone therapy) plus localized treatment (the High Dose Radiation targets the prostate only, the IMRT targets the prostate and the entire prostate bed as well as nearby lymph nodes).
The hormone therapy isn't all that fun, BUT...you can get started with it and generally you need to be on it for roughly 2 months prior to starting the radiation therapy (the HT weakens the cancer cells and makes them more radiosensitive)...so that 2 month clock kind of buys you time to further research, choose your docs and options, and know that you've halted cancer growth in the meantime.
Good luck.

We saw several docs. The diagnosing physician was a urologist (a surgeon). He gave us the biopsy results and wanted to do surgery within a month. For my husband, that was complicated by the fact that he'd had a double inguinal hernia surgery years ago and has nylon mesh from that...we were not sure he'd be a good candidate for the RP and his urologist expected there would be either no nerve sparing or he'd only spare the nerves on one side.

We met with a few Radiation Oncologists. The one who did the HDR brachytherapy really ONLY does brachytherapy. He's a specialist at UCLA (Jeff Demanes, MD).

We met with a SBRT (cyberknife) guy at UCLA as well, and we met with a couple of radiation oncologists in Orange County where we live (we're about 1-1.5 hours away from UCLA, so for daily radiation appointments, that was too far). In the end, we went to UCLA for the HDR brachytherapy (that was one long day, with a pre op and post op...so we went 4 times - consult, pre op, procedure, and post op).

We did the IMRT locally after choosing one of the 2 orange county radiation oncologists. We could've had the same guy do the brachytherapy, but we felt more comfortable at UCLA for that - Dr. Demanes just put us both a bit more at ease. 25 sessions.

First step might be to familiarize yourself with those options. You can find threads on this site with info and links to studies about outcome.

I'm relatively new to this journey myself, and I don't want to be accused of attempting to sway someone away from one treatment or toward another. We found that for us, the triple play was the best shot at a cure while minimizing side effects.

We ruled out surgery because it seemed that for my husband's diagnosis as a G9, he would likely still need some radiation after surgery - we didn't want to suffer the side effects of both treatments. We determined that we probably would've given surgery more thought if we believed that surgery would rid him of the cancer. We didn't have that confidence with the diagnosis...we were pretty sure he'd still need radiation to the prostate bed and the lymph nodes.

My husband is in this group and was diagnosed in 2012. Latest Dr.'s appointment was this past Friday. Seems his PSA is rising so Dr. Sartor wants to start Zytiga in January. Said he has done extremely well given a G9; mets and a psa of 177 to start with ... but it is time to start adding additional treatment options. Gave him a 4-8 year longevity window at this point in time. Husband is not happy about that .. but new discoveries are being made daily and maybe there really will be cure in the next couple of years.

Yes, he is positive for the BRCA mutation. Dr. Sartor is looking into any trails that might he might have potential to join. I don't know anything about Lymparza ...??

Very cool! Thanks that really looks promising.

DebbieMH...
I was looking at this trial for my husband who is CHEK2 positive but he started Zytiga 3 months ago which is classified as a CYP-17 and therefor excludes him...who knew! There are other Parp 1 trials but if it were me I would ask your doctor if starting Zytiga would get in the way of starting a trial to get after that BRCA2 gene.
https://clinicaltrials.gov/show/NCT03012321

Redwing57,

Interested in your comment "Once prostate cancer has gone metastatic to the bones it's generally no longer considered curable so almost anything done is a form of palliative care. Hormonal treatments and so on can slow it down overall, often for a very long time"
being new and just learning everything since I am in this situation, What does a very long time mean to you.

Microchip

Please add me to the list that no one wants to be on I appreciate all the info support and help coping with Pca thankyou so much

microchip said...
Redwing57,

Interested in your comment "Once prostate cancer has gone metastatic to the bones it's generally no longer considered curable so almost anything done is a form of palliative care. Hormonal treatments and so on can slow it down overall, often for a very long time"
being new and just learning everything since I am in this situation, What does a very long time mean to you.

Microchip

Hi, sorry it's taken a while to respond. I'm not here as much lately as I used to be.

We have members here who were diagnosed metastatic, and are doing very well even many years later (10+). So a very long time, to me, means quite a few years! And as we do well with the available treatments, there are new treatments and combinations of them that are being developed constantly.