A newbie freaking out - seeking advice (and hopefully!) some reassurance...

Hi Everyone. I've been reading all your stories with great interest - what an amazing, supportive forum I have been lucky enough to stumble upon! My hubby of 30 years (GG - aged 57) has just been in the wars, and I would love some sage advice from others who have been (or who are) in the same situation, as it seems I can't find many people around, with PSA's as high as his pre-surgery (over 23).

He had a Transperineal prostate biopsy and a flexible cystoscopy on 26 May, which showed cancer. I don't know how many core samples were taken during that biopsy - all we were told at the time was 'yes - you have cancer - it is serious - a 'Gleason 7'. We changed specialists after that.

We booked him in for a RARP with a lovely experienced surgeon here in Aus (www.declanmurphy.com.au) which he had done on the 1st of July, so it is now just on 2 weeks since his surgery.

The pathology showed a large tumour 4.7cc right TZ, apex to base, with extension into left TZ. His Gleason score was given as 4(50%) + 3 = 7 - Grade Group 3. They indicated the tumour was organ confined, with pathological margins clear, no evidence of metastatic carcinoma. No perineural invasion, no lymphovascular invasion, Intraductal carcinoma (IDC-P) - not identified and prostatic intraepithelial neoplasia: not identified.

They gave his pathological stage grading as pT2c NO.

I am now deeply worried the surgery will fail, as it seems this is almost inevitable for anyone with such a high PSA. He is looking very pale, but has done pretty well, all things considered. He appears to be almost fully continent, which is a good start. The nomograms posted on this site would appear to be overly optimistic (perhaps that is deliberate)?, as I can't seem to find anyone who has been cured, when they have started out with a PSA of higher than 20.

Help? Anyone?

Post Edited (Jaybee&GG) : 1/20/2017 1:58:42 AM (GMT-7)

Oh Bill you are so kind. And that's exactly the kind of reassurance I was looking for. The yananow forum that I have been endlessly scanning, doesn't seem to have many 'good luck' stories regarding men with PSAs of over 20 - in fact quite the opposite. So I'm deeply worried and concerned. It is going to be the longest few weeks of my entire life, waiting for that post op PSA reading.

I'm also concerned that his PSA rose even higher before his surgery, because I've read that biopsies can cause a sharp rise in PSA - my GG looked alarmingly pale all of a sudden, between the time of his biopsy and surgery. I'm so worried his body won't be able to fight off those evil proteins. Sigh. How is one to sleep?

But thanks again for your kind (and prompt) response - it is very much appreciated.

Jaybee,
It's great that you decided to post. Welcome to the HW forum! I can feel the concern you have for your husband and the frustration you have for the GP dropping the ball. That is sadly a common story and it was our situation as well, with a much worse outcome.
But it really sounds like your husband dodged a bullet and because he is continent already, is going to recover nicely from the surgery.
The down side will be the anxiety you will both experience prior to regularly scheduled PSA tests. But at least GG will be watched closely now for ANY rise in PSA. I hope that never happens and wish you both much happiness.
Beth

Hi Jaybee, welcome to HW. Glad you posted your story for us. Looks like mentally things sucked really bad but then you got to the right doctors and then had RP. The post op report sounds great. I wish you and GG the best. Please keep us posted. Take care. -JR

Thanks everyone. It is so inspiring to read all your stories and your kind words of encouragement. I'm not sure about feeding GG a steak - everything I've read seems to be pointing in the opposite direction - perhaps a nice piece of local fish and some oven baked wedges instead?!! Yes, his catheter is out - it drove him completely bananas. He appears to be pretty much continent, which is a major bonus. But yes - he is still looking pretty beat-up and pale. One day at a time, I guess.

I will do my best at taking all your good advice and get him out and about, and walking as soon as possible. So far he hasn't been very active, but we've only just hit the two week mark post-surgery. All the information I've been looking at, suggests that recurrence is inevitable with his PSA at such a high level, which scares me half to death, but we will do our best to remain calm until his first test. From memory, his urologist said it would be somewhere around the 3 months post-surgery mark... This waiting is going to kill me!

Welcome to HW, sorry to you need to be here.

Focus what you have, not what was. It's a good pathology report with every chance of being the only treatment needed.

PC is frustrating in that it grows slowly, so it could it be a few months before you know how effective surgery has been. Like has been said, take time to heal and deal with the emotions this can generate and know that there is plenty of hope.

and if the worst does come true, there are a ton of second line treatments that will work.

Andrew

Normally, a high PSA like that might raise concerns, but his case is not normal. Transition zone (TZ) tumors are relatively rare (less than a quarter of all cases) - PC is usually found in the peripheral zone only. The TZ is the zone surrounding the urethra. When a man gets BPH, it is usually the TZ that enlarges. When that happens, it squeezes the urethra closed (I'm guessing he had problems peeing before the surgery and that's why he had the cystoscopy). One of the causes of elevated PSA in BPH, and maybe in your husband's case, was from urinary retention that resulted from the enlargement of the TZ. This is an abnormal cause of elevated PSA quite apart from the direct PSA elevation caused by the prostate cancer itself.

I'm just guessing about this, but it might give you some relief to think about it this way. At any rate, an undetectable PSA in a couple of months will tell you whether your fears of distant mets are groundless or not, as worrying does nothing to help you. I should also mention that his risk level before the surgery was considered intermediate, not high. And you couldn't hope for a better pathology report. So you have every reason for optimism.

- Allen

Hello Jaybee & GG,

Welcome to our forum --- we're pleased to welcome you from Australia !

Thankful to hear that you have gotten through your surgery, and now recovering, day-by-day, and step-by-step ...

You've found a very supportive, informative, and caring "corner of the world" here --- we've truly got members from every corner of the United States ... and very loyal members from Africa, South America, Europe, Asia ... and of course ... AUSTRALIA !

We've all formed a collective group here ... we look after one another ... we listen ... we advise one another ... we provide moral support ... and beyond all of that, we share our collective TREATMENT EXPERIENCES, in the interest of helping others ... now and down the road. Hundreds of members check in here daily ... and readers ALSO check back through the past archive of threads, searching for information shared over time.

I can tell from your post that you are a bit worried and anxious about test results ... we all understand those pesky worries, fears, and anxieties that go with this diagnosis ... we wait for appointments ... we wait for lab results ... we wait to hear what the doctor will say the next time ...

It's a lesson to learn over time, but everyone here will attest ... worrying has NEVER paid off for any of us ... we've all done it ... we don't like that we worry ... eventually, you discover that time spent worrying won't change any outcomes ... easier said than done, I know ... and we also worry about our fellow comrades here, as we all understand. Something I've learned over time ... if you can replace CONCERN with worry, you'll sleep a lot easier. CONCERN is healthy ... you are showing care and compassion ... worry doesn't help you and it won't help the other person. So, focus on care and CONCERN ...

That being said ... for everyone starting this medical journey, I have found that there is no substitute for focusing on family, friends, and faith, in whatever form that takes for you. Stay connected with friends ... neighbors ... work colleagues ... church friends ... community friends ... old classmates ... relatives ...

Those people are going to form your TEAM ... your TEAM OF SUPPORT, going forward ... you need them ... your doctors are the coaches ... you and your husband are the team players ... and all of the people in your life become your CHEERLEADERS ... and soon enough, everyone in your life begins working as a TEAM ... and you will be surrounded by a mighty network of support and encouragement.

Now --- some life lessons learned from my experience --- once you face a diagnosis and as your husband begins to recover --- do EVERYTHING you can do to keep living life to the fullest --- stay active --- stay interested --- keep your head in the game, so to speak ...

Stay focused on your usual hobbies --- your interests --- your pastimes --- your involvement in the community --- exercise --- volunteer work --- social life --- family events --- holidays --- and celebrate MILESTONES together with family and friends along the way.

I've got good friends of mine, who share my same health diagnosis. We're all about the same age and we didn't expect to be dealing with a health diagnosis at this age. These friends of mine ... most of them I've known for decades ... they are now my BATTLE BROTHERS, and we have a bond of brotherhood and friendship and loyalty beyond all words.

Over time, your husband might find a friend or two who will become his BATTLE BROTHER ... but meanwhile, this WEBSITE is dedicated to our BAND OF BROTHERS right here ... and that includes the SISTERS like you who visit here each day, as well. We're all in this together, in incredible ways ... 365 days a year ... 'round the clock ... weekends and holidays ... and from every corner of the globe. It's a tremendous resource ... visit here often ... continue to post and share with us, and we'll do the same in fair return.

I've got a motto to share with you, that seems to help all of us involved in this health concern and I'll share it with you today ... "Cancer is now a CHAPTER in our life story, to be sure ... so give it its due and measure ... but beyond that, don't EVER let cancer become the title of your BOOK OF LIFE."

Best way to keep the "wolves of worry" at bay --- stay busy and stay active, each day !

Wanted to reach out to you Jaybee and GG, from across the miles --- sending my encouragement, support, and message of HOPE with both of you today !

Sent with my best, from the Central Midwestern region of the United States,

"CYCLONE TEAM FAN" ~ from Iowa State University

You guys (and gals!) are truly an inspiration. I can't express in words how grateful I am to have stumbled upon this incredible source of information and support.

I guess with the speed everything has happened, I've hardly had time to draw breath. And reading from sources like one specialist prostate cancer hospital in NSW, which advises that "Surgery and Radiation have a very low cure rate in men with PSA's of greater than 20" was enough to devastate me, before I even knew anything about this disease. But thanks to you all, and this incredible forum, I am learning more and more each day, and will do my utmost to remain positive (and keep GG that way!), until his first test.

In the meantime, it is freezing here (yes - mid winter!), but the sun is still shining, so I'm going to drag him out for a walk with me now. Let's see how the cold treats his new plumbing...! Thanks again for the insights, kind words of encouragement, information and support.

Jaybee

Post Edited (Jaybee&GG) : 1/20/2017 2:01:39 AM (GMT-7)

Hi Jaybee and GG, another Aussie here in Canberra.

The guys have already given you lots of good advice, so not much more I can add other than to reiterate Halberts advice to forget the pre-op PSA, that has gone now. The Pathology report is now your best info as to the state of affairs and it reads pretty darn good - wish mine was that good (and my pre op PSA was only 7).

And to be continent at 2 weeks, WOW!, things are going very well.

I am guessing GG was treated at the Peter Mccallum Cancer Centre? Couldn't do better, they are doing some great stuff there.

Relax, things are going very well for you, and GG is on track for a complete recovery.

All the best, Chas

PS, if you think Melbourne is cold at this time of year, you aint been to Canberra. -5C when I went for my 7.00am walk yesterday!

Certainly not in our books Chas! So good to hear from another Aussie - even if you are freezing your bits off in chilly d-a-m-n Canberra! I'm guessing that with your steadily rising PSA, that l'il old holiday you've been taking from ADT will be over before too long. I wish you all the luck in the world for the next chapter. Thank you so much for touching base - I'm still pinching myself at my luck in finding all you guys here. You are all so inspirational. I have so much to learn...