PSA 66.3, G 8 - anyone else out there? Newbie

Just found out my husband has PC. PSA is 66, up from 53 4 weeks ago. Gleason score is 8, but not sure of the breakdown. Bone and CT scans set fro next week and then appt with urologist. I know this is aggressive cancer and would appreciate hearing from anyone in a similar situation. Right now I have a zillion questions with no answers and a lot of anxiety.

If you could add his age and country it might be helpful later.
Good luck choosing treatment.

He's 49, though his birthday is this week and he will be 50. We are in the US. He is currently in Austin, TX and I am in Virginia. He had just started a new job when we found out he had an enlarged prostate and "elevated" PSA. Seriously, the GP simply said "elevated". When he told his parents he may have PC, they told him both of his grandfathers had it. Not sure why they didn't tell him that a long time ago. Trying not to be bitter about that as it is irrelevant at this point and I have to stay focused on being positive and getting him through this.

fairwind - thank you for the literature recommendation.

Raddad - it is just a number...

Hope....sorry to hear about your husband. i believe I compare about the same to him.

My original PSA was 94 and Gleason is 9...just a little higher. I believe radiation and HT may be the best options but that will depend on bone scans and CT scans and health.

I was told by my urologist that surgery was not my best option. he took me through the partin tables and I came up 92% of it being outside the prostate so I opted for radiaton. They radiated margins and seminal vesicles too just to make sure. The Lupron alone has shrunk the tumor/prostate in half and My current PSA is 1.3.

I guess the best thing is to do the research because I went thru 3 Drs before I found one I trusted. The first one told me I hasd a 30% 5 year survival rate and recurrence would be 90%...He also told me I had cancer over the phone instead of callinm me into his office. he was the only Uro in town just a block from my house so I gave him the first shot. Big mistake. Now I drive 80 miles away but its well worth it as I trust my current team of Drs.

But I guess the best thing is to learn about the disease and make sure whatever decision you make is your own. a website called yana is a great place to match your PSA/Gleason to hundreds of others with the same data and you can follow their stories and what treatment they had. It helped me a lot along with this forum.

I dont post much but read a lot and have learned so much here from the regular posters. Plus about 99% of the people here have been there and done that and genuinly care about other posters. Good Luck

hope,

welcome to HW, sorry you have the need to be here, but glad you found us. this is a knowledgable and caring community.
with your husbands posted stats, has all the appearances of an aggressive cancer, but we have men here with much worse numbers that are doing very well for themselves. i wouldn't hold anything against not knowing about PC in his family, in the "olden days" it often wasn't known about, discussed, etc, and was often only diagnosed in latter stages.

most all men have the bone and ct tests done after a diagnosis of PC, very common, routine, and in most cases, they come back clean, but do serve a purpose as a baseline for future tests and if the cancer continues to progress.

in my opinion, he needs a good treatment program from a uro/surgeon, a radiation oncologist, and best of all, if possible, an oncologist with heavy experience with PC. with a gleason 8, its important to know all options, it may be in his best interest to have a combination treatment as his primary treatment.

we have so many here experienced with robotic surgery, open surgery (myself), radiation seeds, and regular radiation, and hormone treatments, plus men that are using a combination.

if you need to vent, vent freely, we can take it. no such thing as a dumb question , so fire away. we all tend to share what we know have learned among ourselves.

my best to you and your husband, in the days, weeks, and months ahead. there's no reason not to have lots of hope at this point, as there are many options and avenues to explore.

please keep us well posted

david in sc

Dear Hope,

Just wanted to wish you and send you some positive energies. I'm not really one to give advice. Its really scary and the initial waiting for the first catscans and bone scans is hard but once you know what you are dealing with, this community and so much medical research and science is out their to help you. I have found the most selfless people on this website, wishing the best for each other and some extremely important insight that even a doctor can't give you. take care.

hope4thebest,

So sorry to read about you and your husband's newest journey.

I totally understand the anxiety. My only advice would be to learn as much as you can and to not rush into anything, as the first reaction is to just "get it out!" Since our journey began, we have since changed our thought process drastically from our initial knee-jerk reaction.

My husband was diagnosed in July with similiar numbers, and also at 49 years old. If you would like to talk to another wife dealing with this, my email is in my profile.

To Casper... thank you for posting the effects the Lupron shot had on your tumor. Your post gives me great hope for our visit back to MD Anderson in January!

 

Thanks for all the positive info. We have an appt Thursday with the uro after more tests on Tues. Are there any specific questions we should ask?

Hope. Welcome

I was also about the same age at diagnosis, but biospy said I was just a Gleason 6.

No need to assume that it is an agressive cancer, it is still very difficult to tell without a larger number of rapidly rising PSA tests etc. because, while he has had a big jump in four weeks, I have my suspicions about that (thought I have no medical expertise).
Would I be right that he had a biopsy done between the PSA test that was 53 and the one that was 66, as that rapid rise in PSA might simply be due to the biopsy. I was under the impression that guys had to wait several weeks after a biopsy to get a meaningful PSA reading. You even need to maike sure that the PSA test is done before a DRE as that can make the PSA go up too.
So check with doc about that and perhaps wait for another PSA test in a month or so when the prostate has recovered a bit more. (And a PSA rise due to any infection as a result of the biopsy will take even longer to come down.)

That said, even the 53 was a high first PSA level and Gleason 8 is not a low score either. I expect it is 4+4 as 5+3 and 3+5 are unlikely, if not impossible, combinations of grading.

How much tumour was there? It will be described somewhere in the report in terms of how many cores were positive and how much of each core had cancer in it. The report may also indicate if there was any suggestion that the cancer was spreading outside the gland, or if there was PNI (perineural invasion) PNI means that some cancer was found in nerves within the gland as well as in the gland itself.

You almost need to ask the uro to go through every line of the report/reports slowly and explain what each part means in language that you both understand, and in a way that means you will still understand what was said later the same day and later the same week and still understand it six weeks etc. After two and a half years I know feel I know all the terminology as if I'd learnt a new language, but at the beginning I knew nothing, and have to remind myself that new guys are likely to be in the same position.
My docs have always agreed with me that it is better to ask them an unnecessary question that to not ask the one you need to ask.

There are a couple of sticky threads here that may help (sticky= permanently at the top of the list) eg:
www.healingwell.com/community/default.aspx?f=35&m=1019612

Hope you get good news about the scans, and leave the doc's office feeling better informed and less worrried.

Alf

I also suggest reading Dr Walsh's book on surviving prostate cancer. I also live in Austin and was diagnosed with Gleason 8 in Jan. 2009. My PSA was under 4. I did have the robotic surgery and so far almost 3 years later has been undetectable. My surgery was done by Dr, Fagin who is world known but he is no longer practicing. If you husband needs to talk he can email me.

Going to see the urologist this afternoon for all the results and recommendations. Since we are in Austin, TX, I really want him to go to M.D. Anderson Cancer Center in Houston to get a second opinion, regardless of what is recommended this afternoon. He seems to think it is too far and very inconvenient. However, I am not going to give in on this.

Susan B - I have the notebook in hand - ready to go this afternoon.

Also - Printed out the list of abbreviations to take with me so I can understand everything (at least on the surface!)

Husband has already decided what type of treatment he is willing to do, even without benefit of a dr. He's going to make me crazy!