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Posted 11/20/2015 2:55 AM (GMT 0)
Thanks logo. I appreciate your advice... I suppose mostly just here looking for input as researching PC is a enormous task when it comes out of nowhere. I guess I was half expecting there to be one or two medical facilities that are far above the rest and there may have been a consensus on which ones they were. I will say hearing information from people that have actually gone through this personally has been a great thing for me... I know you all understand the emotional Toll it has when hearing this diagnosis for the first time... Any other advice or input would be greatly appreciated.
Posted 11/20/2015 3:43 AM (GMT 0)
Needinfo2, as far as "one or two" great treatment places goes, there are actually more than that. If you start by googling 'top 10 cancer centers', you'll be in good hands whichever of them you wind up at. You're right, it is overwhelming, both from the variety of opinions about what is 'best' and from the sheer volume of information that is actually out there.

In reality, it comes down to choosing one of 3 basics, then it branches from there:

1. Active Surveillance. If your dad qualifies, and if he (and you) have the psychological makeup to handle it.
2. Surgery. Two basic types-open or robotic. Either way, look for a surgeon with lots of experience at a top center.
3. Radiation. Again, two basic types-brachytherapy (seed implant) or external beam (one of several different types).

Once THAT first decision is made, then it's time to find the right team. location, cost, reputation are the usual considerations.

You'll get there.
Posted 11/20/2015 4:20 AM (GMT 0)
Needinfo:

You mentioned you are in Canada. That's a big place.

Are you near any specific States.

For example, we mentioned Prostate Oncology Specialists. They are in Marina Del Rey, Ca.

Certainly MSK in NYC is top-notch.

MD Anderson in Texas is another choice.

I am partial to the first one because they will do a telephone consultation. Not cheap, but it might be well worth the investment

Mel
Posted 11/20/2015 5:07 AM (GMT 0)
Thanks Halbert, you summed that up very nicely... we are in western Canada. So del ray is not that far of a journey. I have already contacted them to find out what is required for a consultation from distance. If required I am more than willing to make the trip in person... everyone keeps telling me we have great care here, but my gut is telling me to look elsewhere for a second opinion on which treatment would be most effective for his profile. Thanks very much Mel....

I am very surprised with the how we have been inundated with people saying to cure this 'naturally' and 'holistic medicine'. Everything from baking soda, vitamin C, vitamin D, blackstrap molasses, to apricot pits. Has anyone had any experience with any of these 'miracle' cures helping out at all?

I have to say to everyone, that hearing 'there is a chance' from a complete stranger that has been through this, is a million times more powerful that hearing 'everything will be ok' from friends and family members. So I can't thank you enough...
Posted 11/20/2015 11:53 AM (GMT 0)
needinfo2, on the subject of 'holistic' cures. As far as I know, there are ZERO legitimate studies that actually show that any of these types of things can arrest or cure cancer.

My personal view on the linkage of diet to cancer is this: There may be a linkage, just as the may (even probably) be a linkage between overall environment and cancer. What we are exposed to in our everyday lives has an effect over the long term on our bodies and our physical health. Problem is, those exposures start on the day we're born (or actually before that), and the stage is set early in life. There isn't anything wrong with going to a 'heart healthy' diet at any age, but to think that it will stop something like cancer that is already present is a pipe dream.
Posted 11/20/2015 12:38 PM (GMT 0)
Needinfo2, as far as major cancer centers, in the U.S., i would add Mayo, and Clevelend Clinic. Johns Hopkins has a reknowned urology department as well. I realize that some of these may not be geographically convenient, just want to add to the entire picture.

I think on the West Coast, i've read here, about UCLA and UCSF having excellent Prostate Cancer programs as well, others may chime in
Posted 11/20/2015 9:24 PM (GMT 0)
Compiler your perception is your reality, mine is mine and the moderators is theirs. My post has not been edited. needinfo2 who also has her own perception, was/continues to be very gracious in her response and I sense my responses as well as the earlier responses from the forum and the ones continuing will lead to a successful end of this difficult season for her and her Dad.... passive/aggressive...tee hee That is ONE adjective I have never heard from anyone in my life. You were the first and as such will cherish that difference of opinion. I say that in truth, but again our lenses to life see differently. Now may we return to the the needs of needinfo2.

Pratoman. Ditto!
Posted 11/21/2015 12:41 AM (GMT 0)
Sorry to stick my head in so late - I'm kinda busy this month. Great news about the bone scan! It puts him in the category of potentially curable, albeit high risk.

I just wanted to say that if you are anywhere near Vancouver, you have one of the best places for the kind of combined brachy+IMRT that MichaelT and JNF described at the BC Cancer Centre. Really no need to pay for US doctors when you have such good ones right there. I believe they do both LDR and HDR boost therapy there - one stop shopping! Here's some background info from them you might find useful:

EBRT + LDRBT boost provides superior cancer control compared to EBRT alone

- Allen
Posted 11/21/2015 2:01 AM (GMT 0)
needinfow, TallAllens advice is the the pearl in field you have been looking for... to my view...
Posted 11/21/2015 2:36 AM (GMT 0)
Logo prat Hal com, thank you all very much your time it is very very much appreciated. I know you all have your own story and it feels very selfish to just be here talking about mine and my father's. I really hope one day I can be a person on here lending some support to a newly diagnosed individual. It means a lot.

Tall Allen, thank you so much that is some great advice and Vancouver is extremely easy for us to get to and use! I am already looking up their facility and looking to get in touch with them! This seems like a very good option.

We heard back from doc today that mri is scheduled for Dec 3rd. Does this seem like a long wait? Obviously time is of the essence here. Does that seem like an abnormally long wait time?

Thanks all..
Posted 11/21/2015 2:57 AM (GMT 0)
No it does not seem that long, but then again Im not waiting In pca{ arf arf}years tis but a day. We all thank you for sharing you and yours with us as we hope you will continue to do.
Posted 11/21/2015 3:50 AM (GMT 0)
Dec 3rd is just two weeks away Needinfo2, the waiting is ver hard, we know, but two weeks will not make a difference.. Pls keep us posted.
Posted 11/21/2015 4:06 AM (GMT 0)

needinfo2 said...
...I know that this is an incredibly vague and difficult question, but is there anyone that could lay out for me what you think specifically I should do next to ensure the best care?...

If I were you I would contact Prostate Oncology Specialists in Marina Del Ray and go from there.

They should help you sort out the best path to take.
Posted 11/26/2015 10:16 PM (GMT 0)
Hello all.
We have been patiently waiting to get in for a mri. I was told today that the reason for the wait is because the mri can't be done until 6 weeks after the biopsy. Reason is because the prostate could be bleeding? Does this sound accurate?
Thanks!
Posted 11/26/2015 10:32 PM (GMT 0)
That's about right. You need the prostate to heal before imaging. The biopsy causes swelling, bleeding and stuff.

Six weeks seems a bit long, but not excessive.

Andrew
Posted 11/26/2015 11:18 PM (GMT 0)
Thanks Andrew!
Posted 11/26/2015 11:33 PM (GMT 0)
Regarding brachytherapy, your Dad would not be eligible for LDR in Canada, but he would probably be a good candidate for HDR combination treatment, which is done in many locations across Canada:.

"Canadian eligibility criteria: Patients with low-risk disease (≤T2, PSA <10 and Gleason scores ≤6) (Canadian Consensus Criteria, which mirror those to the NCCN)14 are eligible for LDR brachytherapy as monotherapy in all Canadian provinces with brachytherapy programs. British Columbia, Manitoba, Quebec and Alberta also offer LDR monotherapy to patients with intermediate-risk disease. Ontario currently funds LDR brachytherapy, only for patients with low risk disease. Intermediate (<T2, PSA 10–20 or Gleason score < 7) or high risk disease (T3a, PSA >20 or Gleason score 8–10) patients are commonly treated with HDR brachytherapy combined with external beam radiotherapy (EBRT).....

HDR brachytherapy in Canada: HDR brachytherapy is currently used as a method of local dose escalation for patients with intermediate- and high-risk disease in Ontario (Toronto, London, Windsor, Oshawa), Quebec (Montreal, Quebec), New Brunswick (Moncton) and British Columbia (Kelowna), with plans to begin similar programs in St John’s, Halifax, Edmonton, Calgary and Saskatoon. "

www.ncbi.nlm.nih.gov/pmc/articles/PMC3650818/
Posted 11/27/2015 12:12 AM (GMT 0)
Thanks Hawaii. Great info. For some reason when I asked his urologist about brach, he said he didn't think he would be a candidate for it. I'm am unsure as to why as it seems to be a desired treatment for his condition?

Regarding the above upcoming mri I am trying toget my dad (and myself) emotionally prepare for what the results will likely be. I know this is probably an impossible question but could anyone suggest what we are probably going to be looking at for a result?

Also I am trying get an understanding to the fact that he was positive in 12 of 12 pins from his biopsy. I don't see that often in people's descriptions of their diagnosis. I didn't receive any numbers that show "percent of involvement". Obviously being positive in all pin shows a lot of cancer is there, I get that. But does this change his treatment options?

Thanks all
Posted 11/27/2015 12:20 AM (GMT 0)
I have learned that many urologists know very little about brachytherapy and seem to be biased towards surgery. PCa is just one of the many medical conditions that urologists deal with in their day to day practice, so I guess it wouldn't be fair to expect them to be experts in all of the treatment options for PCa. What bothers me though is that they seem to be very willing to express opinions on possible treatment options, even when their knowledge is limited.
Posted Yesterday 6:50 PM (GMT 0)
NeedInfo2, I'm a relative newbie here, advocating for my BF who was recently diagnosed. Reading your excellent questions and the responses from the community is why I love this site. No, the folks here are not physicians and their responses should not be considered medical advice. HOWEVER, these folks have so much knowledge and experience that they are worth their weight in gold. Their support is unsurpassed.

Your father is so fortunate to have you as an advocate. Keep it up but be sure to care for yourself, too.
Posted Yesterday 7:02 PM (GMT 0)
I would agree with Hawaii-Guy that you won't get good brachy info from a urologist. Also keep in mind that for him brachy would most likely be a combo treatment--the uro may not be thinking that way.

Being positive in 12 of 12 cores clearly means there's more cancer present, but to my non-medical professional mind, the only treatment that it makes less likely is surgery. (Which I don't think is on the table for your dad anyway.) If the bone scan had not come back clean, that would have changed your treatment options, but since it did for now you can presume the cancer is local and combo radiation therapy could handle that. (I do realize, of course, that the MRI is still pending and that will give you more info.)

Have you made inquiries yet into the Vancouver center that Allen mentioned above? He's got great knowledge of the top facilities/practitioners in North America. (And maybe even beyond...)
Posted 1/7/2016 3:20 AM (GMT 0)
Hi all,
havent been around in a while, thought i would post an update and also have a few questions if anyone has the time to share some knowledge.

Since I was here last my dad had a MRI and it showed no sign of cancer in the lymph nodes. It was a 1.5T scan. From what I understand it is not the more detailed scan available.

We have met with his Radio Oncologist and his plan is hormone treatment for 18 months (first injection was today) and external beam radiation starting at the two month point.

We have also got a second opinion from prostate oncology specialists in Marina Del Ray. They have suggested 24 months of hormone treatment, hd Brach combined with external beam and 5 months later a round of chemo. Their thinking is that although there is no signs of metastatic disease that he should be treated under the assumption that there is escaped cancer and it just isnt visable yet.

One big issue we are trying to figure out involves the "turp" procedure. My dad has extreme difficulty emptying already. There is some concern that radiation treatment may cause a complete failure of his ability to empty. Because of that his doctor here is recommending the turp prior to external beam radiation. He has expressed that he cant radiate with a catheter in, so it would likely need to be through the stomach. However, I have been told that a turp may interfere with receiving brach. They are unsure at this point if that just rules him out of low dose or high dose brach as well. Another turp issue is that it will remove his top bladder valve and later when he gets radiation, the radiation may damage his bottom "valve" leaving him permanently incapable of holding any urine back.

So i have a few questions if anyone has the time..
- any thoughts on the two described treatments? one sounds a lot more aggressive obviously.

- Does anyone have any experience with the turp? Does this disqualify him from HD brach? is there a chance of the cutting with the turp spreading the disease into the body?

- If you had to weigh the choices of getting a turp (and not being able to receive brach) and not having a turp (to stay eligible for brach) but very likely need to have a catheter for the duration of the radiation, any thoughts on which way you would go?

Any feedback on any of my questions would be much appreciated!
Thanks!
Posted 1/7/2016 5:18 PM (GMT 0)
Congrats on the scan results! Unfortunately, I can't comment on your TURP questions--hopefully one of the smarter guys here will weigh in on that.

But a clarification of where things stand for your dad--am I correct that he's started HT and at this point you haven't made a final decision on the two plans until you vet the TURP questions? I am certainly under the impression that the combo treatment has better results for G9s like your dad than just IMRT. (Full disclosure: I had the combo treatment as a G9, but with much fewer positive cores.)

I also hope someone weighs in on the chemo as an adjunct treatment. My overall impression of Prostate Oncology Specialists is that they believe in treating aggressive cancer very aggressively, so that recommendation seems consistent with that philosophy. Certainly their overall recommendation (combo treatment, longer HT) is more aggressive than what your RO is recommending.
Posted 1/8/2016 5:47 AM (GMT 0)
Hi michael,
Thanks for you reply. You are correct, we haven't nailed down a treatment yet but have already started hormones (first injection one day ago). Definitely want to figure out the turp question first. Part of the problem is that where we are from they do not perform HD brach, they ldbrach (which I know he's not a candidate for). So because they don't have experience with it the doc here doesn't seem to know much about it, or if the turp would disqualify him. It sounds from what I've read the HD brach adds a significant boost in control, so we are prepared to travel to get it done. I'm working on that the last few days... he would very much like to get a turp as his quality of life isn't great right now with his urinary issues, but doesn't want to do it at the cost of lowering his chances at a good outcome from radiation.
Thanks for taking the time to read!
Cheers
Posted 1/8/2016 6:08 AM (GMT 0)
Hi,

Congratulations on getting a treatment plan to focus on, although many of us understand the hesitation and fear as to whether a chosen path is really the optimal path. Regarding your TURP questions, may I suggest contacting member Turp1A on the menu tab "Members" above. He may have an opinion on your TURP questions, or maybe he can suggest others to contact. He has been very helpful and patient with my questions during the past year. I hope he doesn't mind me volunteering him. Also, if you are still looking for other top quality second medical opinions or resources closer to home, I suggest you consider the Prostate Cancer Center of Seattle where one of the ldr brachy pioneers, Dr Peter Grimm, continues to practice. Also in Seattle is the Seattle Cancer Care Alliance. Both of these centers were happy to talk to me about my condition and options over the phone in general terms, enough to decide whether to pursue a consultation with them.

Continued good luck to you and your father,
Jim
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