Just Diagnosed...

HillBillyNana said:

Treatments
I have been reading about the treatment options open to you.

Nana
Hey, Nana. Hope your vacation was enjoyable. Now that you're back let us know what you all decide on for treatment. I saw that you had mentioned HIFU in a previous post. If it had been offered in the USA and approved by the FDA I would have considered it more closely but I wasn't too excited about pursuing a treatment where I wouldn't have a local team available for the long term follow-up and I didn't want to be stuck in a foreign hospital with questions about insurance or additional payments if something went wrong. From what I've read, HIFU seems to be fairly common in both Europe and Canada and I expect that eventually it will get approval for use in the US.

Best to both of you.

Kongo said:

Great Questions
Ira,

Great questions and I’ll try to respond with what I know but you’re really plumbing the depths of my technical knowledge here. BTW, I know that you are tied into UCLA with your AS protocol and they have an excellent SBRT group there, including Dr. Christopher King who developed the CK protocol at Stanford and did the first CK study. I’d suggest that you talk to those guys the next time you go in for a visit. I believe UCLA uses the Novalis system not CK to deliver SBRT but the answers to your questions would pretty much be the same.

First, a note about terminology. Brachytherapy is the permanent implant of radioactive seeds in the prostate using either iodine or palladium isotopes. HDR brachy involves the insertion and removal of tiny radioactive rods or wires in the prostate using a much more powerful isotope. Also, HDR brachy is frequently used for patients with a much later stage cancer than that typically treated with CK which mostly targets men with early detected, low risk cancer characterized by a PSA <= 10, Gleason <7, and Stage 1 or 2. This makes head-to-head comparisons awkward as they are used to treat different degrees of cancer.

If radiation fails, follow on treatments include hormone therapy, chemotherapy, cryosurgery, and even orchiectomy. I suppose the new Provenge drug might also be an option. Surgery is an option but radiation frequently causes scarring which would make surgery more difficult and increase the likelihood of long term urinary and ED issues, although SBRT delivers dosage so accurately that I think it would be less of an issue than other forms of radiation. There is not much in the literature about surgery after SBRT or HDR brachytherapy as it has such a high success rate. The sad note here is that if this doesn't work, the patient may be one of the unfortunate oncs who has an aggressive type of PCa that is not going to respond well to any treatment modality.

I think it’s obvious that any person seeking treatment will want to get the most experienced medical team possible to perform the procedure but I haven’t seen any studies that show a difference between centers performing SBRT like the studies showing the importance of the number of procedures performed with DaVinci, for example. SBRT involves a team approach involving your radiologist, a nuclear oncologist, and a dosimertrist. The delivery system, either CK or Novalis, or some other system pretty much does all the work in dose delivery and barring a major mechanical malfunction, they pretty much do what they’re programmed to do. One of the reasons I chose CK over Novalis is that the CK center had a lot more experience than the newly installed Novalis system at the center I consulted with.

Typically, radiation side effects manifest themselves much further out from the procedure than with say surgery. Immediate side effects, if any, include a sense of urgency regarding urination which tends to resolve itself within a few weeks and can be treated with ibuprofen or other anti-swelling drugs, or Flomax. There is a small percentage of men who develop minor rectal toxicity (bleeding) that also tends to resolve itself rather quickly but sometimes needs treatment (similar to what they do if they find a polyp in a colonoscopy). There is also the potential for long term potency issues but these are treated with drugs like Viagra. A recent study out of a CK center in Naples, FL indicated that at three years, 82% of the men were fully potent but that there was an increase in the use of Viagra like drugs. This is one area that is really hard to measure. A man’s sexual function often decreases with age regardless of whether or not he has cancer and I seem to recall that the median age for men having CK is mid-60s. Increasingly, older men also have diabetes or obesity issues which can also affect sexual function so sorting out what caused what is a difficult issue. Brachytherapy (seeds) can have an additional side effect of having a seed migrate that can lay up against the urethra or colon wall causing more significant problems, although I believe this is pretty rare. I also seem to recall that ED and incontinence issues are more prevalent with seeds than SBRT but not by that much.

CK is frequently used in conjunction with IMRT to treat prostate cancer. CK can also be used to treat identified METS that occur beyond the prostate region.

Hope this answers your questions to some degree. Others who have had CK or some other form of SBRT may wish to chime in here. Again, with these very technical questions, I would consult with a specialist before going to the bank on any of these answers.</p>

CK (SBRT) with adjuvant IMRT - question
Kongo or others:
I am aware of the protocol using HDR-B (High Dose Rate Brachy) along with IMRT, which is the tx that pjd has elected based on his extensive research for T3 locally advanced, non-metastasized PCa. (In addition, triple ADT is part of his tx plan.)

The statement in the previous post "CK is frequently used in conjunction with IMRT to treat prostate cancer" is of interest because I have not come across any info or studies nor am I aware of any doctor or institution where this specific combination tx is being used for PCa. If you have more info, such as links to studies, etc., perhaps you might consider posting them here as I would be most interested in reading more on CK/SBRT with adjuvant IMRT as a primary combination tx for PCa. Thanks.
mrs pjd

Kongo said:

CK Boost
Here are a couple of pointers you might wish to check out:

http://www.ncbi.nlm.nih.gov/pubmed/20815416

http://www.ncbi.nlm.nih.gov/pubmed/17888705

http://journals.lww.com/amjclinicaloncology/Abstract/publishahead/Acute_Toxicity_After_CyberKnife_Delivered.99826.aspx

http://cyberknife.com/uploadedFiles/For_Your_Doctor/500345 B HDR Whitepaper.pdf

There are also somoe case studies of using CK with HDR Brachy at Georgetown. Hope this helps.

Kongo
Thanks. I've reviewed the links you listed and, with the exception of the first pub med link, the info mostly discusses the comparison, safety & similarity of CK/SBRT boost to that of HDR-B (of which I am aware). The first pub med link in your post is a review of a limited pilot study @ Georgetown (using CK/SBRT with IMRT), and which appears to recommend a Phase II clinical trial, whether or not this trial is underway is unclear. Unless I've missed something, there is no info on the "frequent" use of CK/SBRT combined with IMRT as a primary tx modality, especially in intermediate stage PCa.

Although it is my belief that the combination of CK/SBRT with IMRT will be a viable PCa tx option in the future (perhaps with SBRT eventually replacing HDR-B) after further studies are conducted and data compiled, currently this combination tx appears to be experimental and generally unavailable as an accepted "mainstream" PCa tx, except in the form of HDR-B with IMRT, which is an accepted and respected tx for intermediate PCa.

Swingshiftworker said:

HIFU & The Choices We Have To Make
Kongo: That was my take on HIFU too, except that I don't think there was any question about insurance coverage -- there's none (yet).

From what I read (never contacted any docs directly), HIFU costs $25k out of pocket plus travel costs and apart from having to travel to Canada or Mexico to get it done, I too was worried about the issue of continuing care.

So, when I found out that CK was offered in my home town at UCSF and that Blue Shield would pay for it, the choice to go w/CK was a no brainer.

Short of that, I would have stayed w/Kaiser and gone w/Brachytherapy for "free" -- or paid for CK ($55k) or PBT at Loma Linda ($35k plus 2 months living expenses) out of pocket, which obviously would have been financially painful but not out of the question.

Glad it worked out the way it did. First CK treatment is next Tuesday. Wish me luck!

Swing
You have done your homework and UCSF is a great institution from everything I've read. You've also got the pathology that suggests a successful outcome for treatment. In just a short time you will have this in the rear view mirror.

Best of luck as you start tretment next week. I'll have you in my thoughts and prayers.

Kongo said:

CK and IMRT and ...
Mrs,

My comments about "frequently" using CK/SBRT as a boost to IMRT (or even other radiation methodologies) pretty much flowed from another cancer forum hosted at www.cyberknife.com which is moderated by physicians who use CK at several institutions around the country. In many of their answers to questions from men considering CK, the CyberKnife doctors often suggest a CK boost along with conventional radiation for intermediate or high risk PCa patients. If you care to peruse that sight, I recommend you use the search term "boost" in the prostate cancer section of the patient forum. In particular, one radiologist is described who had CK plus the conventional IMRT regimen to treat his intermediate grade cancer, but several other examples are easily found.

The logic behind this, as my limited knowledge of radiation physics lead me to understand, is that the CK is great for localized tumors contained within the prostate itself but not so good in higher grade diagnoses where cancer may have spread into the margins beyond the prostate. CK tightly treats within the margins but is probably not adequate outside the margin where a more conventional IMRT or external beam therapy is better suited.

I would not hesitate to direct that question at a CK doctor at one of the centers.

yes, thank you
That might be good idea, although a biased answer might be had if put to CK doctor on a CK forum. As indicated in the past, CK (CyberKnife) is the manufacturer's name for SBRT or stereotactic radiation therapy. No doubt the combination of SBRT (CK) with IMRT can be used as tx for intermediate PCa. The fact is that the combination tx modality of SBRT (CK) with IMRT is still experimental and no long term study results/data are in to make it a medically accepted mainstream tx...that doesn't mean it can't be or isn't an effective tx, only that the medical community has not yet seen the "evidence" from clinical trials in order to recommend it has a viable mainstream tx option for intermediate PCa. Most doctors consider it "unethical" to recommend a tx that has not gone through clincial trials. And that doesn't mean that one shouldn't try it if they believe it might be successful for their PCa tx. Instead, and for now, HDR-B (which gives similar dosing to that of SBRT, except that it is dosed from the "inside-out") combined with IMRT has been put through clinical trials and study data indicate it has success & can be recommended as one of the viable tx options for intermediate PCa (locally advanced, outside the prostate, non-mets). As I stated in the previous post, it is my belief that future study data on SBRT (be it CK or Novalis or whatever the manufacturer) combined with IMRT will show that it can be a viable & effective tx option for intermediate PCa. Currently, however, CK (SBRT) with IMRT is not frequently used for PCa tx.

MCinNC said:

??? re data/ stats for hospitals/doctors
In addition to picking a specific treatment plan for my PC, I'm obviously looking at various drs and locations that provide the treatments.

Other than asking the doctors and hospitals about information on outcomes for patients like yourself, are there other sources for hospital and doctor data that allow you to actually compare one to another?

To put it another way, what objective measures are there to determine the best doctor or hospital for prostate removal, or any other PC treatment?



Mac

In Atlanta from my
In Atlanta from my perspective there are only two robotic surgeons. Dr Shah out of St Joe and Dr Miller out of Northside.

If you are considering Open surgery and since you live in Atlanta I would go to a recognized teaching hospital e.g. Northwestern or John Hopkins (and of course have the teacher do the surgery).

I looked at all forms of radiation and I looked outside of Atlanta as well at one of the nationally recognized cancer treatment centers (I believe there are only 64 in the USA)… From what I saw they all are pretty evenly matched...

I considered HIFU as an option but my urologist told me I was to far along otherwise he would have gone to Canada with me for the treatment…

At the end of my research and multiple consultations I ended up selecting one of my urologists recommendations –that I do hormones then radiation or open surgery with Catalona out of Northwestern (and my uro is considered a rock star surgeon in the Southeast)…I selected to have surgery with Catalona…

Like I said lots of choices and it took me about 6 weeks to make my decision…


Enjoy the journey-Peace

MCinNC said:

I'm actually in eastern
I'm actually in eastern North Carolina, with medical centers at Duke, UNC-Chapel Hill, and Wake Forest as my closest teaching hospitals. All three have the "comprehensive cancer center" designation by the National Cancer Institute.

I was wondering, for example, if there is a way to compare the various treatment outcomes in patients from each of these hospitals...

I am sure that most
I am sure that most experienced doctors have “their” statically odds on the various procedures but I believe most of these statistics are manipulated to various degrees….

Another reason I had my surgery performed by Catalona is that his statistic had a wider range of Gleason types in his studies (i.e. he did not “cherry pick” his patience for results).

Research is important, finding a competent expert in their procedure is important but I would not place 100% of my procedure selection just on statically odds…My spiritual adviser (my priest) told me to let go of statically odds and do what I felt was the best for me…

You can have someone tell you based on x and y you will have a 98% chance of never having a reoccurrence but what if you fall into the 2% in this “experts” statistics? Remember and from my perspective most experts manipulate their findings….

The best to you in your journey…

In addition to surgery, cryogenic treatment and biopsies (which can spread cancer), there are at least 6 alternatives which are natural. These alternatives work, think about Ronald Regan and Suzanne Somers.

Since you are not in a hurry, do some research.

http://www.howcurecancer.com

Peter

Kongo said:

Nana
Hey, Nana. Hope your vacation was enjoyable. Now that you're back let us know what you all decide on for treatment. I saw that you had mentioned HIFU in a previous post. If it had been offered in the USA and approved by the FDA I would have considered it more closely but I wasn't too excited about pursuing a treatment where I wouldn't have a local team available for the long term follow-up and I didn't want to be stuck in a foreign hospital with questions about insurance or additional payments if something went wrong. From what I've read, HIFU seems to be fairly common in both Europe and Canada and I expect that eventually it will get approval for use in the US.

Best to both of you.

What happened to my post?
I wrote a long post telling about our vacation and it disappeared!! Main point is we are waiting for the PSA test in November. My husband is pretty sure the doctor is going to want to do some low-dose radiation. But the doctor wasn't positive there was a 'steady' rise in the PSA. Said it could have been some chemicals that were used to do the test. I wish I had taken a recorder to the doctor's office.