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Posted 1/3/2014 3:38 PM (GMT 0)
Hi everyone,

I have been reading all your posts and find everyone very helpful (and hopeful). My husband was dx yesterday here in St. John's, Newfoundland Canada, and we are just trying to process everything...

he had a biopsy on Dec 13---and FINALLY got the results yesterday...(welcome to the Canadian health care system)

We have not received a copy of the report (I have just requested it---but apparently that's unheard of here, and nobody really wants to give it to us) but we were told yesterday that his Gleason score is 8, cancer was found in 8/12 cores, he has had several normal DRE's and his PSA has been between 11.6 - 14.9 over the past 6 weeks. Before that they were always under 1.9 over the past 5 years. He was having occasional blood in the urine, but the biopsy was ordered because of the elevated psa. He is 57 years old and we have 2 children ages 3 and 5...

So his urologist has said that they want to treat it as very aggressive, and here's that Canadian system again, but it will take at least 4-6 weeks to get him in for an MRI and Bone Scan, and then another 3 weeks for the results...he doesn't have another appointment with him until Feb 11.

Right now I am calling in all favors to get these tests sped up...but who knows.

Is there any chance that it may be contained within the prostate? or is that just too much to hope for with a G8?

I want to thank you all and wish you all the very best.

xx

ashley

 

Posted 1/3/2014 4:29 PM (GMT 0)
Welcome to HW. Sorry you need to deal with all this.

G8 is advanced cancer. It's treatable but like you ask, is it contained. That is so difficult to answer. With the information you currently have the best answer is, maybe. There is some hope. The MRI and bone scan likely won't show much at the PSA level you have.

Still there is plenty of reason to hope. Even if it's not confined there are treatments that can keep the beast at bay for many, many years.

Other than saying they want to treat it aggressively, has any specific treatment plan been mentioned? If they went with the conventional plan you'd be looking at surgery, followed by radiation with a dose of HT just to catch anything that escaped. Won't be fun to go through, will cause lots of stress, normal will change but I fully expect that at the end your husband will do just fine.

Dealing with your medical system seems like the bigger challenge right now. Hopefully others that have been through that can share their experience there.

Now's the time to educate yourself.
Hang in there and keep us updated on your progress.
Andrew
Posted 1/3/2014 4:37 PM (GMT 0)
Thanks Andrew.
No "real" treatment was discussed---he simply said that we have to wait and see where it has escaped (which he assumes it has with a PSA that high)...he said that surgery wont be an option if it has moved beyond the capsule. He wants us to speak to a radiology oncologist asap. We have 2 good friends who are radiologists who are currently calling in emergency scans---but I hate to even ask anyone to do that.

Can I ask what you mean by "the MRI and bone scan likely won't show much"? Because its a G8 will they not be readable? The Dr did say that bone scans are pretty useless as even if one has arthritis it could show up on a BS...
Posted 1/3/2014 4:48 PM (GMT 0)
Hi Ashley....fellow Canadian here.
I am categorically not an expert in any of this but I thought I would try to put some of your fears at rest. It feels like everything is going so fast right now but a week or two really does not matter. Once we got past the first flurry of activity, the pace slowed right down and I started to realize that decisions did not need to be made TODAY.

I can't remember the details, but I also think that they usually do not recommend any treatments right after the biopsy any way. It needs to heal.

If you can get the tests moved up great, but don't get too stressed if they don't

Nancy
Posted 1/3/2014 4:57 PM (GMT 0)
Hi Ashley-

Sorry you need to be here, but glad you found us. I highly recommend that you check the links in my signature below for people newly diagnosed with PCa.

PCa is a low moving cancer. Right now, try not to get overworked or rush. Be diligent, ask good questions, take good notes when you meet with doctors, and take the time to make the decisions that are best for you and your husband. When I was diagnosed (Gleason 7), my urologist told me that it was fine to spend 2 months between diagnosis and beginning any form of treatment.

-Gedman


-Gedman
Posted 1/3/2014 5:11 PM (GMT 0)
Thank you:)

I actually just got the MRI call 2 minutes ago...Tuesday at 9am...the one with the "magic wand". I really do hate to ask favors of friends---but I'm quite confident they would do the same if the roles were reversed.

Thank you for the reminder that decisions don't need to be made today---but its so frustrating for someone like me (who wants everything done yesterday;) to feel so helpless and useless.

I am very glad to have some new friends here who understand.

Thank you

Posted 1/3/2014 5:38 PM (GMT 0)

ashleynfld101 said...

Can I ask what you mean by "the MRI and bone scan likely won't show much"? Because its a G8 will they not be readable? The Dr did say that bone scans are pretty useless as even if one has arthritis it could show up on a BS...

Even though it's an aggressive cancer at that PSA number, any mets are likely to be too small to show up on a scan. The MRI might show interesting stuff about the prostate but looking for distant mets right now might not turn up anything. But it's got to be done just in case.
Posted 1/3/2014 6:20 PM (GMT 0)
Welcome to Healing Well. As another G8 guy I want to give hope. I was 67 when diagnosed. I had surgery and so far after almost 5 years I remain in the zero PSA club. I was fortunate to have Medicare and Medicare supplement insurance so my MRI and Scans happened within few days and so was the result. I had my surgery 6 weeks after the biopsy. I don't think that waiting 6-8 weeks for the tests and result will change the outcome very much. I wish you and your husband the best.
Posted 1/3/2014 7:21 PM (GMT 0)
Does anyone have or know anyone with experience treating PCa at Punta Pacifica Hospital (John Hopkins) in Panama City, Panama???

I can only see great reports about the treatment and doctors there---and I just want to have a backup option if everything here moves at a snails pace...

Posted 1/3/2014 7:54 PM (GMT 0)
Hello Ashley,

I just posted, on a separate thread, about my husband just being diagnosed with Gleason 8 here in British Columbia. So far, we have been very impressed with the BC health care system so every province will be a bit different. As all the others have advised, take a deep breath and use your time to learn as much as possible about your options. This site, as well as many others, have a wealth of information. I have included some that are specially Canadian.

Our urologist has absolutely no hesitation in giving us the biopsy report so I think that you should insist on having that. Not being giving the report speaks more about your urologist than it does about the Canadian health care system.

Before looking into where you should have your treatment, maybe it would be better to first decide what sort of treatment your husband may want. My husband, for many reasons, does not look favourably on surgery as an option, even though the urologist recommended it. He won't be making a decision until he has as much information as he can gather and definitely not until he sees a radiation oncologist.

Good luck.

http://www.prostatecancer.ca/
http://www.prostatecentre.com/patient-information
http://www.prostatecentre.ca/
http://www.prostatecancer.ca/Support/PCCN/Find-a-Group-Near-You/Newfoundland-and-Labrador#.UscUPYUcQZc
Posted 1/3/2014 8:26 PM (GMT 0)
Welcome.

Since your Canadian system is notoriously slow, suggest you start trying to book appointments with a second opinion urologist/surgeon, a radiation oncologist and a medical oncologist, with as many as possible from national PCa centers but not all from same practice to avoid issues with self-referrals.

Once you have more information, there will be decisions that have to be made but as already mentioned not today. so starting now avoids a delay later when timeliness may be more of an issue.

Urologists tend to recommend surgery, radiation oncologists tend to recommend radiation and medical oncologists are not as one dimensional and less biased but tend to recommend hormonal therapy as a first step.

Let the medical oncologist quarterback the expert opinions but you and your husband reserve the right to make the calls.

LupronJim
Posted 1/3/2014 8:32 PM (GMT 0)
Hi,

you're right---I shouldn't complain about the Canadian system---but the Nfld one.

Its incredibly inadequate. We have an average of 12 months to wait for an ultrasound...I personally had a 9 month wait for one when I had gallbladder issues---which almost killed me , from having to wait so long I had gone septic...

We have 12 hour waits in the ER and doctors who ALL schedule 3 patients every 15 minutes---and none are accepting new patients.

When we were first told that hubby had to see a urologist we were advised by all medical professionals that we would have to go to Toronto or Halifax as we only have 2 here and neither will be accepting new patients---and the average wait list to see one is over 2 years (even as an urgent patient).

We all have friends and relatives that have died while waiting for treatment. We had a friend die last week, after telling our dr's that he needed heart surgery, they wouldn't even look at him---he went to florida, did the tests, brought them back, and insisted on the surgery (now that they knew about the problems they HAD to deal with it)----they scheduled this emergency surgery for 6 weeks later. He died last week, 2 weeks before he was supposed to get it...he was 48.

Our sitting premier, discovered he needed a very important heart surgery a couple of years ago....even knowing the major flack he'd get, he took the first flight to the US and paid through the wazoo to get it.

As you can all see, I have VERY valid reasons for needing to seek treatment for him elsewhere....

It is beyond frustrating!!!

 

Post Edited (ashleynfld101) : 1/3/2014 5:09:50 PM (GMT-7)

Posted 1/3/2014 8:36 PM (GMT 0)
hi Ashley, with a highPSA, 8 out of 12 cores positive and Gleason 8, you need to treat the disease aggressively. It does not mean your husband is in imminent danger, just that, given his age, there is a chance he could die of the disease. With you having two small kids, you need to buy as much time as possible, not only years, but decades.

I would recommend radiation, and also radiating a wider area, including the lymph nodes. This is because I have seen too many men on this forum where surgery has failed. I would go as far as to say, that if a urologist would recommended surgery with his stats, the urologist would do it probably with a hindsight that your husband would need radiation afterwards to "mop up". Radiation AFTER prostatectomy is connected with a higher risk of side effects. Radiation with prostate still in place is a better option. It can take care of the disease that is microscopically outside of prostate, surgery cannot. Microscopic disease will not show up on either MRI or bone scan. There are experimental new scans than can detect cancer activitiy better than usual MR or bone scan but this is not main-stream or the usual protocol (these scans are called Feraheme MRI and C11 Acetate or Choline CT scan).

Take a look at this video, please: askdrbarken.wordpress.com/2012/05/27/prostate-cancer-pelvic-lymph-nodes-is-there-a-role-for-radiation/ It talks about importance of whole pelvic radiation. Again, this may be an overkill, that can increase side effects, and your husband may need to be clear about that. But this disease can be quite stubborn and if it were me, I would choose this route. I have been reading on PC for a long time, and I am only suggesting to you what I have learned. I have simply seen too many men fail surgery (PSA starts climbing again). High-risk stats are poor candidates for a strictly local treatment. Good luck and best to your family.
Posted 1/3/2014 8:36 PM (GMT 0)
PS: Sorry....End of rant;)
Posted 1/3/2014 10:39 PM (GMT 0)
High Gleason score does not necessarily equate to a higher chance of escape,especially in an individual case, You have an individual case. a soft gleason 7{3+4} has a higher chance of escape if the tumor is right on the edge inside, than a gleason 10 tumor located well inside the the capsule. Surgery and the associated post op pathology is the only way, to my knowledge to "know" if there is EPE and/or cancer outside. New quality imaging techniques are extremely helpful in "determining odds" of escape as are nomagrams. But post op pathology is definitive , not suggestive. This not to say that I recommend surgery, just making a point of definitiveness.. I won't even get into, why even that is not 100% definitive. You should do what it appears you are doing,i.e. getting all the information you can, consult with practioners of surgery, radiation and all the various types of radiation. You need to do a crash course on PCA, if you haven't already
Posted 1/3/2014 10:49 PM (GMT 0)
One thing you'll learn is numbers are only that...numbers. The ONLY thing that matters is what happens in your individual situation so don't let the idea of what "usually happens" to someone with his stats affect how you feel about his situation. Hard to do but it is a deeply personal journey.

My thoughts and prayers are with you during this most difficult time.
Posted 1/3/2014 11:09 PM (GMT 0)

ashleynfld101 said...
PS: Sorry....End of rant;)

No sweat, Ashley. I understand completely because I have many friends in Nfld who have told me the same stories. Maybe we were just lucky but my husband got his bone scan the day after his diagnosis.

Obviously living in a province with more population does help to have better access, and the closer one lives to a major city centre, the better.

However, you sound like a fighter and your husband is lucky to have someone like you being his advocate. You do what you have to do, without apologies.

I would suggest that you get in touch with the Prostate Cancer support group in your area. I believe there is one in St. John's or maybe Cornerbrook. They will be able to provide you with a great deal of information pertinent to your area and may even be able to help you with gaining better access.
Posted 1/3/2014 11:15 PM (GMT 0)
:) Thanks.
Yes, I'm in St. John's---actually we live in the most easterly house in North America....where right now there is a blizzard raging. Ugh.  
We'll do his MRI on Tuesday and see what happens from there:)
xx

Post Edited (ashleynfld101) : 1/3/2014 5:04:44 PM (GMT-7)

Posted 1/3/2014 11:57 PM (GMT 0)

ashleynfld101 said...
Hi everyone,I have been reading all your posts and find everyone very helpful (and hopeful). My husband was dx yesterday here in St. John's, Newfoundland Canada, and we are just trying to process everything...
he had a biopsy on Dec 13---and FINALLY got the results yesterday...(welcome to the Canadian health care system)

We have not received a copy of the report (I have just requested it---but apparently that's unheard of here, and nobody really wants to give it to us) but we were told yesterday that his Gleason score is 8, cancer was found in 8/12 cores, he has had several normal DRE's and his PSA has been between 11.6 - 14.9 over the past 6 weeks. Before that they were always under 1.9 over the past 5 years. He was having occasional blood in the urine, but the biopsy was ordered because of the elevated psa. He is 57 years old and we have 2 children ages 3 and 5...

So his urologist has said that they want to treat it as very aggressive, and here's that Canadian system again, but it will take at least 4-6 weeks to get him in for an MRI and Bone Scan, and then another 3 weeks for the results...he doesn't have another appointment with him until Feb 11.

Right now I am calling in all favors to get these tests sped up...but who knows.

Is there any chance that it may be contained within the prostate? or is that just too much to hope for with a G8?


I want to thank you all and wish you all the very best.

xx
ashley

Hello fellow NFLDer and Canadian,
I had my Brachy treatments done in Moncton, New Brunswick and I believe I met a few guys there from NFLD. I too had to push for my post testing and at the time it was very frustrating.....PM me if you want more details on my Brachy procedure.
Posted 1/4/2014 12:11 AM (GMT 0)
Thank you fellow Newf;)

I'm delighted to see you're doing well:) I may drop you an email with some of hubby's questions!
Thanks so much to all!
Posted 1/4/2014 12:21 AM (GMT 0)
Beautiful spot!
Posted 1/4/2014 12:21 PM (GMT 0)

ashleynfld101 said...
Thank you fellow Newf;)

I'm delighted to see you're doing well:) I may drop you an email with some of hubby's questions!
Thanks so much to all!

Not a problem.....I also have a brother in St. John's who had his treatments there as well, so don't hesitate, we've all been there.
Posted 1/9/2014 5:32 PM (GMT 0)
Hi everyone,
just checking in...I have requested the biopsy report and all past blood work, since 2006....here's something that I'm sure will make some of you as angry as me. I was going through the psa results from 2005: 0.65
2006: 0.65
2007: 1.21 (actually flagged by the lab on the report--NEVER reported to my husband. )
2008: 1.51
2010: 1.65
No tests done from jan 2010 until nov 2013 when it was 12.6
Today 14.9
Still Normal DRE's

I am beyond angry that this idiot Dr chose to ignore the flag from the lab indicating that the PSA had doubled from 2006-2007.

So I guess we sat in blissful ignorance for the past SIX years while this monster invaded my husbands body.
I am really one of those people that wants everything done yesterday. I don't procrastinate and I feel that knowledge is power. I hate what I'm reading concerning his prognosis. He is scared to death that the pain he's had in his lower back and hip for the past few years is bone mets....quite frankly, as much as I'm trying to be subjective in what I relay to him, I'm scared to death too...we have a 3 and 5 year old.

His biopsy shows 8/12 cores positive.
(2) 90% (with PNI) G8's in right lobe
(1) 70% G8 Right lobe
(2) 60% G8 Right lobe
(1) <5% G6 Right lobe

(1) 20% G8 Left lobe
(1) 10% G8 Left lobe
(1) suspicious left lobe

(3) Benign left lobe

PNI Identified

30-40% total core tissue



I just continue to pray that its confined, although it does not look good, and the head of Urology at Johns Hopkins in Panama City said there's a less then 50 % chance that it is....he has had his MRI and Bone Scan done yesterday...we won't get the results until Jan 24!!!

Thank you again for listening to me moan....
Posted 1/9/2014 6:29 PM (GMT 0)
Hi Ashley... fellow Canadian,
I don't have experience with NL healthcare but have been there many many times.
I found that the first response to asking for copies of test was met with hesitation. Mainly because it isn't the norm. All my Drs have printed copies of everything and have nurse hand it to me at beginning of each apt... so I can review it before seeing Dr. When I arrive for an appointment I have all my questions written out with two copies. I make notes on one and he keeps and makes notes on other. (He can't always answer all my questions and will email me later with answers)
Another thing I did in the hectic beginning was arrange for my GP to get copies of all tests... she then calls me with results faster than Onc or Uro. All 3 work great together but it took some organization on my part. Cut down greatly on anxiety waiting for results.

First... if you don't like (or feel comfortable) with your Uro, ask for another referal... Halifax has a top notch Urology Department at Dal. Often you can use a Halifax or Toronto Dr. As quarterback and keep your local Uro.

I didn't have very long to wait for scans but a week does feel like eternity in a situation like this. Sometimes wait times get shortened as your seriousness gets evaluated. Quoted times are often the longest quotes... I know it feels serious to you both but in the big picture nothing is going to change in a week or two. Mostly the scans are a CYA for the Drs. At your stats, most likely will not show anything definitive.

Start learning about options... educate your selves. Ask questions! There is a tomorrow. Enjoy the little things and get ready for the fight of your lives. Think positive!
Enjoy those kids. .. you are both still Mom and Dad to them... the joy they give you will pull you through darn near anything.

All the best
Posted 1/9/2014 11:50 PM (GMT 0)
I was a GL 8 and had failed surgery at Mayo in Jacksonville.  4 weeks after surgery I was still 4.3 PSA and when Mayo said they did not know where I was at I looked to replace them.  I chose Dattoli in Sarasota and after 2 years of fighting this beast I am off HT and a zero.  I will add my signature that tells my whole story but I have been through the whole Gleason 8 saga.  There are many sucess stories.
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