New Guy first post

New to this excellent forum. Thought I was on top of things but see there is a lot to learn here. Thanks. I had RP surgery 8/12/13 and I'm recovering from it very well. After the surgery and getting results of the pathology reports I now have stage 4 cancer so its spread beyond the margins. I also had both seminals removed as they had cancer as well. Doctor says +/- 5 years. My PSA was 33 and now it's .03. Anyway, I like my doctor and most of the doctors I went to getting opinions prior to surgery. Now I'm beginning a new process. "After surgery and still positive". My next appointment is coming up in two weeks and I need to decide which road to take. I'd like to go to the appointment and additional second opinions with a list of options to ask about. I've been reading books, on line info and just now this forum. I've started a list of options and I'm worried I may miss something that's latest and greatest. Any suggestions where to look for an up to date options list will be greatly appreciated. In the future I look forward to participating in this forum. Thanks again.
Jerry

Hi Jerry B, and welcome!


If you (while signed-in) go back to edit your original posting by clicking on the edit button in the upper right corner, you can still add a Subject to this thread. When in the edit mode, the subject is up above the area where the text is....

So sorry to hear about your pathology; that's tough.

Have you read the section in the thread Newly diagnosed with PC - read this thread first about clinical trials, and where to look for them? Give it a try. There are also informative links in that thread for advanced disease cases like yours. Although advanced cases are infrequent, there are other guys with similar case characteristics here who can also offer you some words.



best wishes...

Jerry B,
Welcome. I am glad you are recovering well from your surgery. Discussions about only having five or so years left seems way too pessimistic at this point. You can see my stats in my signature. Post-surgery I was staged as t3bN0 (seminal vesicle invasion, clear lymph nodes), Gleason 9 (5+4) with negative margins. After surgery I underwent radiation, ADT, and chemo.

With your pathology and positive margins, you should definitely be discussing radiation therapy combined with ADT as one of your next step options.

As far as doctors go, I endorse getting an opinion from both a medical oncologist and a radiation oncologist regarding your next steps.

Good luck.
Southern Comfort

Jerry B; Welcome to HW. Sorry you have to be here. Lots of people here will be able to help you as I'm new here. Next mont, will be my 1st year anniversary being DX. I take it a day at a time and try to be positive.

Take care and know I'm praying for you and your family.

Dave in Bartlett, TN

do we assume you are on Lupron or given casodex first and then some form of HT therapy??? If not get on something before the cancer can get well established. Look into all treatments for PCa, as you may need to sequence and make huge decisions as to what you wish endure as to side effects while fighting this sob. I know had stats like yours with higher psa 46.6 and 12/12 biopsies all 80-95% volumes, Gleasons 7,8,9's the scans appeared clear then. I fought unfairly (lol) and tried various drugs that I wished to do, rather than uro-docs cash cow program and he got fired after 2 yrs. Well now into year 11.5 and still kicking, but I know the twilight zone episode all to well watching forums all these years, so enjoying one day at a time.
www.hrpca.org
www.paactusa.org  (newsletter)
www.prostatepointers.org
www.yananow.org  (900+ patient histories, mentors, forum etc.)

Hi Jerry, I'm a fellow G9 and I'm sorry to hear your news. But although you do have a serious cancer, like the wampuscats I also call BS on the 5 year time frame.

I also strongly agree with their recommendation to get an oncologist on your case that specializes in prostate cancer. Those experts are knowledgable about the latest treatment options and clinical trials. There's not a lot of them and I'm not sure where you're located, but if you can provide your location I'm sure this group could come up with a name for you. Also, many of the experts will do a phone consult with you.

Personally, my oncologist is Dr Lam at Prostate Oncology Specialists in Los Angeles. He has been fantastic to work with and done wonders in helping me sort through treatments and putting my condition in perspective.

All the best to you and good luck!

Michael

Welcome, also, Jerry, to HW PC

You have already been given a lot of good advice thus far.

Hope you continue to do well in your recovery stage.

I say you need a first class medical oncologist well versed in advanced prostate cancer, to help you
properly map out your next plan of action in fighting the beast.

Well you certainly have serious stats, there is still a lot to be hopeful at this point.

David in SC