Help - PC newbie

75Tiger,
You already made a great start buy finding this Forum. Read the info on the two "sticky" (with little blue stick pins) threads at the top of our forum -"Newly Diagnosed with PC" and "Long Running Threads". Lots of good info there.

Additionally,in the Search box, at the top line located under "Join Healing Well," type in "Letters to the newly diagnosed." That will locate a thread with very good , insightful posts.

You will have a lot of replies soon, this sight is full of informed, dedicated and compassionate posters.
Stick with us, it is a great support site, you need this in addition to finding a great medical team that you feel comfortable and confident in.

You picked a great screen name, you need the eye of a Tiger to fight this beast. We are all in the fight with you brother, keep the faith,

Wings

75 Tiger,
Welcome to the HW forum. I'm sorry that it is Gleason 9 with probable bone mets to bring you here, but you have found the place to get and are already getting good advice. You are about to find yourself facing some big changes in your life. As the wife of a G9, I was completely unprepared for what I was going to face as well. If you have a significant other in your life, take that person with you to appts and have them bring your questions and write down answers an take notes too. It's hard to remember stuff when you're are in the "hot seat" so speak. Also, this forum is a great place for those who care about you. Ask questions here. All questions get a response I've noticed. Even if the response is "don't know, call your Dr."
Best wishes to you. Keep faith and keep us posted
Beth n Gary

Tiger, welcome. Wow, that's quite a hit all at once. I'd have to look at the map but....can you get up to Durham NC and plug into the Duke system? A good place to start is to google "NCCN Centers of Excellence, which is a listing of the top cancer treatment facilities in the US, broken down by specialties and location.

Emory in Atlanta is another top location.

Listen to Mr. TA, he knows what he's talking about.

In the mean time, hang in there, G9 can be managed, for a long time.

75Tiger,
I'm in Greenwood SC and I'm being treated at Gibbs Cancer & Research Center in Greer and Spartanburg. I ended up there after going to Emory in Atlanta because the RO reccomended it. I have a pretty rare form of cancer (Intraductal Carcinoma) in addition to my PCa so I was searching for a local treatment facility who had top Dr.'s and was on the cutting edge regarding treatment and technology. If you want to check them out let me know and I will give you the Dr's names.

Todd

I rarely tell people I know how they feel because I usually don't, but in this situation, I know how you feel. The first few days after diagnosis are really, really difficult to deal with - so many emotions. Keep busy doing your reading and research, knowledge is power. Keep us updated.

Tiger- Gleason 9 is a higher risk diagnosis. With that in mind, try to find a center for excellence in prostate cancer treatment. Get a second opinion on the biopsy pathology. Knowledge is power, so read as much as you can about the disease. This disease is treatable, and from what you'll find in this forum, there are many who started with a similar diagnosis, and their stories will give you hope.

Good luck.

Hi guy-

boy do I know how you feel from my own experience- my initial diagnosis was very similar to yours, just substitute 10 for 9 and lymph nodes for bone- oh, and I was feeling pretty lousy on diagnosis (a lot of swollen nodes), you have no symptoms yet-

yah, it is very rough at the start emotionally- your first reaction to a possibly metastatic prostate cancer can be extreme and bleak, especially as you read up on the different forms of this disease and start trying to figure which stratum you are in-

I am 8 months post diagnosis- under therapy, the beast is at bay for now, and I feel pretty darn good- so I can say that very most likely, better days are ahead for you- many people speak of the initial diagnosis period as the most stressful, due to emotional stress and symptoms; more than 90% of men respond quite well to initial hormone therapy-

nothing is writ in stone in this disease; if you are truly metastatic, the docs will generally recognize you as incurable in the long run, and your treatment options will seem more narrow (that is my experience anyway); but there are fellows on this forum who have long histories with a Gleason 9 in their diagnosis

so there is every reason to expect A LOT of better days ahead

but I know how everything is different for you now-

there is a lot to absorb- keep reading and learning; find a good doc and get active confirmation (or a rule out) of bone metastases (sometimes what looks suspicious on scans is not cancer, although pelvic location plays into expectations)

initial therapies for met PCa are systemic, the ADT is primary there-

I know how scary ADT can appear to be, and with met PCa, it generally is assumed to be for "life"- but it is powerful medicine at the start for sure; after a while, it becomes the new normal, living on ADT

early chemo is now standard for high burden disease, but at this point, it sounds like you are low burden, and early chemo has not shown benefit to survival in those cases.

and then there are clinical trials that may be appropriate in your case

so much new progress, new therapies- there can be a pretty long high QOL timeline as you work through these treatment stages with your medical team-

so be kind to yourself and lock the negative parts of this life change into the cellar; it is a fight for sure, but you have many powerful tools to work with, the most important being your attitude in making the fight happen; and you have many brothers here on the forum, each finding a way as best they can to better days- they show what is possible in winning early rounds in a long bout; they also show us how to have grace in the later rounds, where the definition of success changes in each round-

good luck to you, good reading, I am glad you found the forum-

here's to fightin'

rf