Newly diagnosed. Looking for advice

My father was recently diagnosed with pc (3 days ago). I spoke with his urologist today and the outlook is not look good. From what i was told his condition is..

-Biopsy showed 12 of 12 pins cancer
- One pin "looks like" the cancer has grown to the edge of the prostate, making him suspect it has likely spread outside of the capsule
- gleason score is 4+5
- PSA level is 8
-he is 62 years old
-have been told surgery is not an option.

He under went a bone scan today. Do not have the results back yet.

Wondering if someone could please give some advice on what they would no next? Understandably need to wait and see the results from the bone scan and planned MRI. Still in shell shock from this news, all of the information is very overwhelming. Would anyone suggest a second opinion? Another pathologist to look at the biopsy? Is there any particular doctor, clinic or hospital that would be the desired choice to take my dad to? Is there any particular treatment that anyone would suggest or any that you would suggest staying away from? What do the stats say about him surviving this for any length?

Any input would be much appreciated...

Hi and so sorry to hear this. But I'm also so glad that you're advocating for your father. This group here can also be helpful, so it's good that you're reaching out.

To answer your question, yes you should get a second reading on the biopsy slides. As Fairwind said, the Gleason 9 is the most problematic thing that you reported and you need that confirmed. There's a sticky at the top of the page here that explains how to send your dad's slides out for a second opinion to an expert that does not nothing but read prostate biopsy slides.

Second, know that you have hope. Probably a lot of hope--you can expect him to be around for quite some time. While Gleason 9 is considered an aggressive cancer, there are lots of G9s here (including me) that are doing very well. Also, your dad has a somewhat low PSA for his diagnosis, which is good since it means that the cancer is unlikely to have spread beyond the general area of his prostate. The bone scan should help confirm that. Let us know what it shows.

Based on your description, some type of radiation is his most likely treatment. In my case, I had a combination of HDR brachytherapy (directly into the prostate), IMRT (external radiation) and hormone therapy (systemic). That may or may not be right for your dad, but it is a likely combination. If you let us know where you're located, we can tell you where to look for the best ROs for each speciality.

Again, so sorry about your dad. But he has a very good chance of doing well. The fact that you're looking out for him and asking the right questions will help immensely. Good luck and let us help you.

Sorry to hear about this for your father. His readings are very similar to mine of seven years ago and I am still here! So it's certainly not a death sentence by any means.

Information. Lots of it. That's what you need and if you're able to afford other advice then by all means do it but a second opinion I would be guessing will probably only produce the same results.

I wish I had more information when I was diagnosed...I would have seeked a different treatment but I'm sure that the end result would have been the same.

Whatever treatment you decide upon, don't make the decision too hasty...you have time. Your dad's life will be different from now on, not neccessarily better or worse, but different.

Best of luck to you.

Hi Needinfo,
A very warm welcome to this forum. Your Dad is so fortunate to have you by his side and trying to find the best care available. The urologist is giving you probable treatments based upon what Dad's biopsy showed. Until you get the results of the scan, you really don't know what options there are, IMO, because you don't know if and how far the cancer may have spread. And with a G 9, you will likely be doing further consultation with a radiologist or oncologist for administration of treatment. You are doing the right thing by beginning to research treatments and looking into finding a good team. The thread about the G 9 club may be helpful, and when you just need a friend or a cyber hug, look into the caregivers corner thread.
Hang in there. You're a good daughter.
Beth

Needinfo

I was a G9 (5+4), had the operation and doctor cut “deep” on one side just in case PCa was “outside” capsule. Everything was good – see my story below!

costs and speed

As a G9 I couldn't wait for a free op at one of our public hospitals in Melbourne (Australia), so I forked about $7-8,000.00 extra to have daVinci done privately, 4 weeks post biopsy. Speed was of the essence and I seemed to have benefited from the early intervention.

There's a lot of misinformation about brachytherapy by doctors that don't practice it. I was also told that I didn't qualify for brachy since my cancer was bilateral. Of course, that wasn't true and I had the same combo treatment as JNF that included HDR brachy. While there's no one-size-fits-all treatment and you'll need to do your homework, that combo has a very good track record for high-risk guys like us and your dad falls in that same category.

Thanks to all again for the feedback. It is very clear that this is not a one size fits all situation. My father has been going through the medical system here for four years complaining of issues emptying his bladder. It took this long to finally get a diagnosis. It is more than frustrating and has left me with some loss of trust with the care he getting. Because this is so complicated and open to interpretation can anyone suggest a facility or doctor that I should take him to? I am not opposed to leaving Canada to see an expert. I feel like it may be important at this point to explore this option.

The hormone therapy seems to be one of the only absolutes as far as treatment goes at this point. Could anyone describe the difference in the Lupton, eligard, firmagon drugs? Is there one in particular that we should be looking for? Is there a particular reason one is prescribed over the other?

I believe his doctor is a urologist that used to do surgery. From what he said now younger doctors in his facility do them. That is the extent of what I know of him, I'm not totally sure what all the different designations and names of these fields mean..

Thanks very very much for all the feedback! Every word is appreciated!

Thanks so much for the info Michael. I am on google already looking at them!

Also just got news that the bone scan showed no signs of cancer being there. Exact words were that bones look 'perfect'. Could anyone comment on how this might change his prognosis? Feels like a tiny piece of good news amongst the wave of bad..

Thanks everyone

Hi Jpenn.. No CT scan yet. I believe it is supposed to be done this week but they haven't called yet to let us know a time.. is the scan done to look at all the whole body or is it specific to the lymph nodes?

CT scan is normally focused on an area. In this case probably pelvis and abdomen.

Needinfo:

It is difficult to answer your question. The standard HT is really Lupron (an injection, usually near the hip area) and Casodex (a pill taken once a day). Usually, the casodex is started 2 weeks before the Lupron shot, because the Lupron often causes an initial surge in Testosterone, which can cause significant issues with PC, especially if it is in the bones (it can result in PC growth there and bone pain). The 2-week advance Casodex will prevent the surge.

I think some of the other txs. do not require the advance Casodex as there is no T surge (Firmagon might be the injection I'm thinking about). I know there is one that is injected into the abdomen.

Anyway, Dr. Lam recommended the Lupron/Casodex combo for me, and we are going intermittant. In my case, the tx. drove my PSA to undetectable. So, starting 12/1, the date of my next scheduled shot, I can forego the shot and stop the Casodex.
The SE I think are the same for all the txs., but I guess one might be better than the other for a particular individual.
The SE are not pleasant at all, and these definitely differ from person to person. Almost everyone gets hot flashes (could be very mild, or very severe) and fatigue to some degree. I was very worried about being able to work while on HT (I am a University Professor, now retired). I had NO ISSUES WHATSOEVER as far as work went. But again, I think we have to be honest here. HT is not a walk in the park, but for most of us it is quite tolerable.

Mel

you need to get to a top cancer medical center. You need to google such and pick one that best fits financial and logistical requirements... Your condition is beyond your urologist pay grade as well as the majority of responders on this site. The site provides good cheerleaders nary a one can meet your medical needs., tho one is a great researcher , who admittedly never reads books by expert and rely's primarily on studies. He is a great value to the forum... to the extent of his knowledge.. they are all providing biased advice based on there personal histories. If you feel that meets your requirements . Go for it . If not research should be under the tutelage of medical specialists in the field. Do not hone the blade of your research too fine or the blade may break. You do not have a case that requires a medical miracle. You have pca of which any top medical center in the USA will suffice to treat. Do not dither... they say pca is a slow growing disease...and it is. but why dither, when it should be clear even from the responses here that you have enough knowledge now to proceed. Find your own team using your own being. Why would you take some ones else team, when they know zip about you. You know enough right now to find the medical team, and once doing that tuen the corner from those who will only>< uninttentially confuse the issue. Your best bet is with a self chosen medical team, not a random bunch of guys and gals on the internet. Great cheerleaders...not so great at given medical advice and will always claim not to even tho they do routinely. ITS a fine line and they do not mean to cross it, but why chance it when there is no fine line with the professional. Good luck, family member will be fine long term, you are in a season that will pass.

Logo, I just have to say, that when I translate your post into English, it feels like an attack on the value of the forum. I for one, have to say that when I was in the shoes of the original poster, or more precisely, his dad, the value that this forum brought to me, without actually giving me medical advice, was, and remains, priceless.

I am pretty sure the original poster is smart enough on his own, to differentiate between medical advice and suggestions/guidance/support, and I doubt that he will take medical advice found here over the advice of a competent urologist. So don't "worry" too much about it. If that was your intention in posting.