Newly diagnosed 12 samples 3 w/adenocarcinoma (Gleason 4+4, 3+4 and 3+3)

Tim,

You're hearing some good things, and it sounds like you've already taken a few good steps. I'm a list maker, so my list of suggestions, in order, goes something like this:

Get your slides off for second opinion from Epstein at JH. AFTER you get the response, then you'll know what you're dealing with.

You have a contact at Brigham in Boston. Use her to help you navigate their system. Get down there and get appointments for consultation with the various experts there. Remember, specialists are good at what they do, and are less knowledgeable about other treatments. In short, don't ask a surgeon about brachytherapy or a radiation oncologist about surgery.

Get yourself a large accordion pleat type folder. Get copies of everything. Take a notebook and pen to all meetings and ask questions. It helps to take someone with you to take notes, because the information dump is massive.

With a G8, you'll have to do something, so get all the information you can and make a rational decision that works for you. Always ask about side effects and understand that it's not entirely predictable what the actual side effects you'll have.

The good news is.."cure" is a real word. It's possible, maybe even likely. Focus on that idea.

Neoadjuvant hormone therapy is often given before or during radiation therapy but have not shown beneficial for surgery. But the side effects from HT are not to be taken easily! Look at this list from www.cancer.org. Other side effects discussed here on HW lately is also memory problems!

Loss of interest in sex (lowered libido)
Erectile dysfunction
Hot flashes
Loss of bone density
Bone fractures
Loss of muscle mass and physical strength
Changes in blood lipids
Insulin resistance
Weight gain
Mood swings
Fatigue
Growth of breast tissue (gynecomastia)

Lower end of high risk? Sort of, G8 put you in grade group 4. Thats lower than grade group 5 (with G9 and G10).
But you are at high risk for cancer spread.

Tim...I suppose if you divided up the high-risk group you would be considered on the low end, although I'm not fully sure how important the distinction is in terms of treatment. But to Halbert's point above, get a second reading on those biopsy slides from JHU. If your G8 were to be re-classified as a G7 that would change you the intermediate-risk group. (Don't hang your hat on that happening though...also in my case, I had a G8 core re-classified as G9 upon my second opinion, so I went the other way.)

As for the bone scan and the MRI, they're quite unlikely to show any spread with a PSA of only 4.

It certainly could make sense to go on HT sooner than later, but I'd get the second opinion on the biopsy slides first. That can be done rather quickly.

Regarding the second opinion. I called my insurance (BC/BS N.E.) and they said that my HMO would require somebody in New England in order to be covered. My insurance sucks and even in that case it would go to the deductible. I have a feeling I will be passing the $3000 deductible this year.

By the way.. the links in the sticky for The Prostate Lab (Dr Jon Oppenheimer) and Bostwick Lab (Dr David Bostwick) are both broken.

Anyway... to the question. Is there anybody in Boston that could provide a similar second opinion?

Thank you,
Tim

I have fixed the links for Epstein and Bostwick Labs. I'm sure there are good labs in Boston but...why not simply go to one of the world's most expert labs so you are sure.

Jim

I do understand about the sucky insurance and limited resources. I also think it's less important for some guys--if you had several G8 cores it probably wouldn't make a difference if a second reading changed your score or one or two of the cores. But give that you had just one high-risk core, I would want to know for sure if that's accurate or not since it can make an actual change in your treatment decision. (Of course, that's easy to say when it's not my money to pay for it...)

Hi All,

From my googling it begins to become obvious that Johns Hopkins/Epstein is the way to go. I will start to work towards that.

On an aside... I seem to be having pains in my sides (kidneys). I don't know if this is psychosomatic but it makes me even more anxious than I already am. My back is very bad and might be contributing to that. Has anybody else experienced this or similar after getting positive results back?

I'm afraid I might go crazy (or crazier) with all of this.

Thank you,
Tim

Toz...... These guys are the best and have given you the path to follow ....too bad it is soo difficult to get all this info from our doctors. Anyway , I sure don`t have anything to add ,except a big Welcome to our club....and I`m a "Post Toastie" and will talk radiation to you later on ......GOOD LUCK on your info gathering ...get busy and relax ...we all have been here .....David

multiparametric is about the techniques used, including contrast agent, Diffusion Weighted Imaging, different kinds of spin analysis. Not so much about the specific machine.

For what you need to see, it's likely the 1.5T will do the job. I understand the 3T has more resolution, but maybe that's not very critical to the staging analysis. Do what works best for you, of course.

Regarding a second opinion on the slides, I had that done because of the severity of my biopsy. Epstein's lab reviewed them, though I had to pay out of pocket. That was almost 4 years ago now, but it was around $200 which I felt was well spent. Yeah, they actually graded the slides worse (2 cores became 5+4, and found 10% of 4+5 in the sixth core) than Vanderbilt had done. But it confirmed the treatment plan, so that was reassuring. All of my positive samples were G9. All six of them. A bit worrisome to be sure.

Hi Jon,

Thanks... Even my head hurts! I'm having a bone scan on Monday. I'm supposed have follow-up on 3/3 after the MRI on 2/27 but I'm going to short-circuit that and get the results of the bone scan earlier.

I don't know how my older brother Michael (66) dealt with this so well. He had rectal cancer about 5 or 6 years ago that spread to his lungs and liver. He had massive chemo. They gave him the max because he handled it so well. I never heard him complain. He went to the Moffitt Center in Tampa (he lives in So. FL). He had gone all the way to MD Andersen at one point but they told him Moffitt can do anything they can. He has been clean for about 3 years now. I think he has a PET scan every year... at some point it goes to 3.

I'm not sure I'm going to handle this so well... But I digress.

I haven't told anybody in my family except my wife. I want to wait until I get the results of the scans back so I have all the info and can process it myself first.

Tim

Tim,
What that means is that the core is 15 mm long, and there is a 9 mm section in it that was scored at G 4+4. Or, 60% of the total volume of the core is 4+4.

Another way to look at it, is that they hit a lesion that is at least 9mm in diameter with the needle.

TimOz said...
Regarding my Prostate Report:

What does "Grossed by:" mean with a name following. Later on the same report it has another name (MD)) followed by "Electronically signed" and after that "Proxy signed by" and another name. So three names on the report:
1) Grossed by:
2) Electronically signed by:
3) Proxy signed by:

Does anybody have any idea which of these 3 people actually did the exam?

Thank you,
Tim

Standard procedure in pathology is that any finding of cancer (any kind, anywhere in body) must have second set of eyes which has not been notified of the reason for review to confirm diagnosis.