new to this

Hello.
My husband had a biopsy a few weeks ago - came back 12 out of 12 cores positive, G7. That news seemed bad enough, but then we met with a surgeon who did an ultrasound and saw "thickening" of the SVs which he is sure is cancer. Bone scan was negative.

The cancer center where we went couldn't agree if surgery or radiation was best treatment. Have decided to go for surgery and, if found in lymph nodes, will not proceed and he will go into radiation/HT instead. Does this sound reasonable?

I'm very scared, but reading some of the posts here makes me feel a little better. Nobody has given us any idea of how long this could be "controlled." I keep thinking he has no more than a couple of years to live, but see others have been on various treatments for much longer.

Thanks for reading this.
acsd

Hi acsd, welcome to this Forum. I have found it wonderful for both support and information. And the connections it makes amongst us.
I was in your shoes in November of 2002. That should tell you that you have a lot longer than a couple of years! I am of the firm belief that you need all the information possible to conquer fear. I understand your fear (and I still feel it) but the days ahead of you won't be so bad as you get adjusted to your new normal.
When my husband was diagnosed in 2002 we felt lucky it was then rather than ever 5 years earlier! Your husband's diagnosis comes at a time when there are even more options.
A lot of the guys here will respond with some ideas for you to ponder and perhaps pursue.
Good luck and know there are a bunch of us wives on this Forum who hold each other close in our thoughts.

Hello acsd and welcome to Healing Well. Sorry you have to be here and sorry for hubby's diagnosis but I hope for the best for you.

You said you are seeing a RO and that was what I was going to suggest as well. There is another option that you should consider with your husband's stats and that is brachytherapy + IMRT. That has been shown to be a highly successful protocol.

We will be interested in your report after the RO discussion. Good luck and keep us up to date.

Jim

Peter, you said it better but my fingers were faster!!!

Jim

Welcome acsd,
In addition to what the others have said, I suspect the RO may also suggest a course of androgen deprivation therapy (ADT) be combined with radiation. I agree with the others, it is way too early to be saying things like "two years", etc.
Southern Comfort

I have nothing to add to the good advice others have already given. But I did want to say welcome and let you know that I'm here and doing remarkably well 11 years after a G7 biopsy, SVI, and a post-surgery pathology of PT3B. Best wishes to you and your husband.

Jim

Thanks for all the responses - you are really calming me down.

He did have CT scan that didn't show anything. He is so thin that one doctor said CT scans of lymph nodes can be hard to read on a person with no fat.
His PSA is 6.3 (where it has been since last October) - up from 4.9 a couple of years ago (we are both feeling a lot of remorse for not being proactive a couple of years ago...I think that he, especially, was cherry-picking info).
Biopsy was 6 cores 4+3 and 5 cores 3+4 and 1 core 3+3......but mostly around 80% involvement on all.

We're pretty much stuck with getting care within the state of Colorado - his insurance will not pay for anything out of state (since he had cancer before, it is the only insurance he could get).

Thanks again.

Hi acsd, I do like the idea of getting a second read of your biopsy slides. If the state insurance won't pay to send it to Bostwick or Epstein, you might want to pay for that yourself if you can. I don't know the cost, but I would not expect it to be significant.

Most of all, just hang in there because this is going to be alright at the end of the day. Deciding on a treatment option is difficult, but get all the best info you can and we're here to share our insights and experiences as well (although we're not medical professionals). All the best to you and do keep us in the loop!

Michael

There have been two reads of the slides - one by the lab that the urologist that did the biopsy uses, one by University of Colorado Cancer Center. No difference, that I know of, between the two reports. I probably didn't mention that the slides have had a second review.

All,

It sounds like acsd may already have the second opinions on slides that were suggested, so the following may be unneeded now, but just wanted to contribute info on cost of readings from Epstein, et al. at Johns Hopkins.

To find the info, you can google:

Johns Hopkins Pathology Patient Second Opinion

Then, on the main page that you will find, on right side section on instructions, there is "complete this form" link. A page or two down therein are the prices. At this time (subject to change of course), it is $250 for slides only (most common) or $350 for slides + blocks. There is no difference between insurance-paid vs patient-paid (except who gets stuck with the tab, of course).

There is another service for surgery remote second opinion which could be found by googling in similar manner. It looks like $550 + $250 more if path interpretation is needed + $250 more if radiology interpretation is needed.

I wouldn't count on insurance coming through on any of this, as it is, after all, a second opinion. My understanding was that Dr. Epstein does most the uro path 2nd opinions himself, though there's no guarantee of that.

I found the whole process to be pretty quick, well-managed, and satisfactory. My biggest hurdle was getting my uro/surgeon to (a) understand why I wanted to do this and (b) complete some paperwork (most of which I did in advance for him) and, of course, (c) requesting the original pathologist to mail off the slides. I had not taken possession of my slides last year, though guess I could have.

Robert

When the "tumor board" at CU Cancer Center met and discussed his case, wouldn't they have had a medical oncologist weighing in? They ended up split between surgery or radiation as primary treatment.

Acsd,
Please "Slow Down"! You have time to make a decision without being "paralyzed by analysis". When you meet with your RO tomorrow, ask him if starting casodex to prevent "flares" and then lupron a few weeks later would adversely affect any treatment you decided on later; ie., surgery or a form of radiation. If not, then get started..You have time to make a decision later. As a minimum, a short course of hormones will improve hubby's chances..The RO can explain and agree or disagree.
You have received excellent advice here although some of it conflicts. We are not medical professionals and tend to espouse the treatment that has worked for us so far. Am I logical? Maybe not..With hubby's high tumor load and possibility of sv invasion some form of radiation is in his future..If I understand correctly, if hubby opts for surgery and PC is outside the prostate the surgeon would abort removing the prostate, sew him up and recommend radiation. If it were me and I woke up with my prostate still in place I would be "pissed"..Why not "do it right the first time" with radiation?? Just my uneducated opinion. Check on Tony's trial suggestion when you have time later. Don't give up hope; your husband may still be cure able!

I am a little late to the party but Welcome.

I pretty much agree with what Tony, Southern Comfort, PeterDA and others have said and it parallels where I am at the moment.

First of all take your time. You cannot take forever but you do have some time.

Second,a team composed of two urologists/surgeons, one radiation oncologist and led by a medical oncologist who has no bias with respect to surgery versus various forms of radiation works well.

With respect to your comment on the Colorado board review, make sure your team is not all from the same practice.

I currently have my Medical oncologist from University of Florida & Shands and have had two 4-month Lupron shots so far, plus started Monthly Xgeva shots today to prevent any bone loss and minimize risks of spinal compressions.

I am sure my MO at Shands has urologists and radiation oncologists working with him in the background, but I also have my own team for second opinions from other practices, including a couple more local than the 1.5 hour drive to Gainesville. However, distance would not be an issue when our health is at risk.

Plan is to stay on hormone therapy for 2 years at least unless I become hormonal resistance in which case there are a variety of other drugs to choose from. As a Gleason 9 (4+5) this is a distinct possibility, and we will deal with that when it happens.

Again, welcome to the board. You will get both sound advice and ongoing empathy and support from the many good people here at Healing Well.

LupronJim