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Just Diagnosed...

MCinNC
Posts: 39
Joined: Sep 2010

Hello Guys. Definitely not happy to be here, but after reading your posts for a couple of days I appreciate the wealth of experience represented here, and would welcome your thoughts.

Here is my deal: I'm 56, with recent biopsy results showing 1 of 12 positive, with 5-10% of the core tissue involved; Gleason of 3+3=6, last PSA I think was 2.3, nothing on DRE, but family history (father) with PC (which was the main reason my local uro recommended the biopsy). Stage is T1c. General health is good, other than having to take Crestor for cholesterol.

I'm going through Dr. Walsh's book, and have had the sit down talk with my local doctor. His is a surgical background and he is comfortable recommending open, non robotic surgery by his partner, who has 20 yrs of experience and averages one of these per week. I'm probably 1.5 to 2 hours away from medical centers with robotic capabilities, and my uro has offered to arrange a visit with the hot shot at one of those university centers that specializes in the RRP technique.

I'm still in the process of trying to absorb a lot of information, and don't want to exclude anything until I feel more informed and able to make a reasoned judgment. The idea of removing all the tissue is appealing. Sounds like the stage, my age and general health make me a good candidate. Yet, the possible side effects from doing exactly that scare the hell out of me, and nothing about my stage, age and general health guarantee me anything.

My dad's health (diabetes and previous small strokes) precluded surgery as an option for him back in the late 80's- early 90's, and his radiation treatments left him with some tissue damage and some re-occurring problems. I don't really know the details of his initial diagnosis.

Perhaps because of my dad's situation, radiation seems a bit less attractive to me. The potential side effects seem almost equally worrisome to those of surgery, but I'm still learning about the details. Don't know much at all yet about Cryo/Thermal, HIFU, CyberKnife, and lots of others that I've heard mentioned. Lots more work to do there. Watchful waiting for another 10 years - without the potential side effects - sounds good too, but I worry about the possibility of missing a chance to "cure" the disease while enjoying life without side effects in the interim.

Anyway, my current thinking, which is subject to change if a better plan comes along, is that I should talk to at least two other drs, looking for different perspectives and specialties. I'm not sure how to look for them in an organized way, particularly giving preference to any that might be nearer to me geographically, other than a hit and miss searches on the internet or webpages of the nearest major medical centers. I expect that I'll get lots of info that way - but processing it will be a challenge.

I'm also thinking at this point that I'm not going to rush the process. My impression is that while it is possible that immediate action is needed to keep the cancer from spreading out of the prostate, that that isn't probable in my situation and I should in the end be as comfortable and confident as possible about whatever choice is made.

(I think part of the "not rush" attitude is because I feel like my PC was found years before it otherwise would have due to a fairly random series of events that led me to change doctors, the new uro saying that due to the family history "if it were me I'd do the biopsy", and my reluctant willingness to go along and humor him with what I felt would surely amount to an unnecessary test. So, taking a month or two to figure things out doesn't seem unreasonable.)

So, there it is. Any comments, advice, thoughts, etc. are welcomed.

Mac

Trew
Posts: 892
Joined: Jan 2010

Do not neglect to look into proton therapy. Please consider it- you are an ideal candiate for it.

There is a thread down the line smewhere with all the proton centers in the US listed.

Consider going to the Loma Linda Univeristy medical site and requesting there free book and DVD on proton treatment. You have so much to save....

MCinNC
Posts: 39
Joined: Sep 2010

Thanks for the suggestion... I'll definitely look into it and see where it is offered in my area. So far, I'm not sufficiently informed on proton therapy or cyberknife to know what the difference between the two is...

Mac

dakotarunner's picture
dakotarunner
Posts: 98
Joined: Feb 2004

Hi MC.
You are correct - there is no hurry. There is a wealth of information out there, and many will chime in here with what they feel is the best way to go. Regardless of what you decide to do, you will find support at this site. None of the PC members are here just for the heck of it, but we all make the best of it, and go on with our lives.

Take your time, sort the info out, talk it over with family and do what you feel is best for you. Keep coming back and let us know how things are going. Gods' blessing to you on your journey.

DR

MCinNC
Posts: 39
Joined: Sep 2010

Thanks DR. I appreciate the good wishes. I can see why this board is an active one - lots of ideas and supportive members.

Mac

ob66
Posts: 220
Joined: Apr 2010

MC in NC, I agree you need not rush to judgment. But on the other side of the coin, you must not procrastinate. Take judicious time to make an informed decision, but do not delay. Why? Pre surgical Gleasons have a way of being lower than post surgical Gleasons. Mine went from 7 to 8 which is all the difference in the world. Your 6 is favorable, but is it really a 6 (post surg.). None of this is said in any way to scare you. Those who know me on this site know I am "glass is half full".....You need to sit down, do your homework, ask any questions you need, and make a decision. Do not let your low numbers lull you in any way into a false sense of comfort. Hate to tell you, but you really don't know the whole picture right now. Hope this helps.

MCinNC
Posts: 39
Joined: Sep 2010

ob66,

You make a good point. There seem to be a lot of folks whose post surgery Gleason was different than their pre surgery score. Guess if you don't choose the surgery, you will never know what the actual Gleason is (or would have been). So regardless of the course of treatment you choose, while you are making decisions using all the info you have, a pre surgery Gleason may not in fact reflect the complete picture? That's not a good thing, is it?

Mac

hopeful and opt...
Posts: 1491
Joined: Apr 2009

DR gave good advice.......your number is low so you do not have to rush to make a decision on treatment..since your numbers are low, you are an excellent candidate for every treatment type

Some comments about one of the choices, Active Surveillance which I have choosen, the criteria is generally 3+3=6 with three cores or less positive with 50 percent or less involvement in each, and a low steady psa....Now I was diagnosed at 66 so I was 10 years older than you with to my knowledge no family history.

Some questions and comments:

How is your general health?

Where do you live? There is a good chance that there are posters in your general area who can direct you to support group, which for the most part give very useful medical information and direction to medical expertise.

For your information, here is information about what I have been doing, and a study which supports Active Surveillance which you may or may not be a candidate because of your age. On the other hand be advised that there are men who are younger than you with worse numbers who are on active surveillance. If active surveillance might be a treatment that is of interest, I suggest that you speak to a physician who specializes in active surveillance for prostate cancer.

My doings/Study

Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI(tesla 1.5) with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Entered in a research study for active surveillance at UCLA.
PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
Johns Hopkins.......second opinion confirm no cancer

Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert

protocol:

PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36

After 8 years:

- 55% remain untreated with stable disease

- 36% decided to have treatment(eventhough they did not have progression)

- 9% treated with surgery or radiation for increase in psa or gleason score

- none have metastatic disease
< 1% men died of prostate cancer

---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005

. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression

FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE

What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.

There is a molecular test performed by a company Aureon, where they , I guess take samples from the slides from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

-----------------
MRI

There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.

MCinNC
Posts: 39
Joined: Sep 2010

Hopeful, thanks for all the info. I can see you have put in the time to evaluate your situation and make choices that make sense to you. I can respect that. I'm sure that reaching a certain comfort level regarding your doctor's ability and effectiveness in monitoring your status is key to your AS choice. I would love to delay radical treatment for years and still feel that I'm not squandering my best opportunity to treat/cure PC.

I have also found a local support group that will be meeting in the next week or so. I'm looking forward to hearing some of the local knowledge about drs and facilities.

Thanks again for your input.

Mac

hopeful and opt...
Posts: 1491
Joined: Apr 2009

" I would love to delay radical treatment for years and still feel that I'm not squandering my best opportunity to treat/cure PC."

The study that I brought to your attention indicates that one can delay treatment with little risk to treatment when and if necessary. That is my intention. I hope to delay treatment for years, or indefinately if possible. As you can see my numbers are similar to yours.

was told by two diffent docs that I probably
have indolent cancer, not likely to spread. The first doc is a premier surgeon, who I initially came to with the intention of treating by surgery.....he refused to discuss surgery but told me that he believe that I had indolent cancer. He wanted me to get an MRI with a spectoscopy which showed no nodule involvement or extra capular involvement...staged t1.

In order to be accepted to the active surveillance study that I am in, I was closely screened. The doc that runs this is very optimistic that I have indolent cancer as well.

I strongly suggest that you have an MRI with a spectroscopy with a tesla machine which only some major hospitals have. This will really let you know where you stand so you can make the best choice in a treatment option.,

Ira

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Welcome to the forum, Mac. I’m sorry that you’re here but this is a great place to begin learning about what options you have and learn from the experiences of others who have traveled a similar path.

My pathology was very similar to yours, relatively low PSA, only a single biopsy core positive with 15% involvement, DRE normal, no physical symptoms and staged at T1c. As others have suggested, you have time to study and make an informed decision about which course of treatment is best for you. Your statistics are very positive in that you are probably an ideal candidate for almost any treatment option you choose.

In my own case I read several books about prostate cancer, consulted with six specialists, and read dozens of papers and studies before making a decision. Since there are so many options to deal with this disease, it can sometimes be frustrating when comparing all the alternatives and you will be given plenty of conflicting advice from doctors and survivors alike about the best course of action.

Many prostate cancer survivors are frequently quite passionate about the various choices of treatment so it is very important to be skeptical and do your own research. Only you can make the best decision for you.

I found it useful to organize all of my medical records in a single folder and summarize all of the relevant information about prostate cancer so that it was readily available when doing my research or meeting with a specialist. I also found it absolutely essential to take along my wife during the consultations because there is so much information being put out you will need someone else to help you take notes. You may want to consider recording your consultations.

I would suspend judgment on radiation based on your father’s situation until you have done your own research and met with specialists. The technology delivering radiation today is much more accurate than even a few years ago and while there are potential significant side effects with almost any treatment, many modern radiation treatments have less severe side effects that some other treatment modalities.

I would also recommend that you talk to more than just two doctors. Keep in mind that most urologists have a surgical background and that over 90% of them will recommend surgery. Radiologists, not surprisingly, tend to want to put you in the microwave. As a minimum I would talk to or at least research thoroughly an open surgery advocate, a robotic advocate, a specialist in brachytherapy who is also familiar with HDR brachytherapy, proton options, IMRT/SGRT/XBRT/SBRT radiation options, HIFU, and cryosurgery. Many specialists with national renown will do telephone consultations but if possible, I think it’s best to meet them face-to-face. I would also suggest that you get a second opinion on your biopsy.

Good luck to you in your research and keep us posted on your progress.

==========================================
Age at Dx: 59. PSA 4.3 which dropped to 2.8 before treatment following the elimination of dairy in diet. 1 of 12 cores positive at 15% involvement. Gleason 3+3=6. DRE normal. Stage T1c. No physical symptoms or family history of PCa.

Treatment: SBRT radiation delivered by CyberKnife system in June 2010. Side effects from treatment: None

MCinNC
Posts: 39
Joined: Sep 2010

Thanks Kongo - lots of really good suggestions and info. I've already seen the need for organizing all the info and records, and no doubt that my wife is an essential companion for important meetings. I agree that my dad's treatment probably has little to do with radiation treatments of today, so I will give them a good look. I have found that there is a center with CyberKnife near me, so I will definitely talk to them about it and other options.

If you don't mind my asking, with CyberKnife apparently being a fairly new option, how much info is available about future results? How many years out have they been able to study so far. Or, was your dr able to give you an opinion about the likely effectiveness of the treatment in your particular case? (Just trying to get a handle on how "speculative" the info you get is likely to be.)

Thanks again.

Mac

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mac,

CyberKnife is just one form of Stereotatic Body Radiation Treatment (SBRT) that is used to treat tumors in several parts of the body. Some confusion exists because of the names…CyberKnife is not a unique treatment per se, it is a method of delivery that uses a system called CyberKnife which was developed by the Accuray Company. Other trade names that provide essentially the same delivery methods include Novalis and there may be others as well that I am not as familiar with.

The advantage of the CyberKnife and similar systems is that the medical team can deliver a higher dose of radiation in a shorter period of time because of its high degree of accuracy and its ability to track in real time organs that move in the body due to respiratory or other factors, such as the prostate, and adjust for that movement to minimize radiation to nearby organs and tissue. Typically, a SBRT dose is delivered in five fractions, or sessions, and delivers a relatively high radiation dose (35-38 Gy) to the prostate. It tracks the movement of the prostate in real time and shuts down the machine if the prostate moves beyond the limits it can compensate for and waits until the organ is back in a position where it can be safely irradiated without harming surround tissue or organs. Other methods of delivering radiation only adjust for prostate position once per session or uses other methods (like inserts in the colon) to attempt to stabilize prostate movement.

The radiation plan used on my prostate emulates a procedure known as HDR brachytherapy, where tiny radioactive rods are inserted and then removed in the prostate based on the anatomy of the individual patient. This process also involves delivering a high dosage of radiation in a relatively short time but the delivery method requires a couple of hospital stays and the patient ends up with his legs in a stirrup for the weekend while the rods are inserted and removed based on the radiation plan. There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKinfie trials that emulate HDR brachytherapy show initial results virtually identical results. There are also less frequent and less severe side effects, compared to many other treatments, with respect to incontinence and erectile function with over 80% of the men who were potent before the procedure being potent afterward. Most incontinence issues, if any, involve a sense of urgency in needing to urinate which almost always resolve themselves within a few weeks of treatment.

My doctor told me those men with potency issues before treatment will likely have some issues after treatment and those without issues, generally do not have post-treatment issues. Same with incontinence and that was the case in my situation.

There are a number of published studies about the effectiveness of Cyberknife for prostate cancer since it was first developed at Stanford in 2004. The manufacturer of the system, Accuray, has many of the studies to date in one place but since it is the manufacturer and obviously has a vested interest, I would extend my search beyond the manufacturer, although I think this one is pretty balanced. It’s important when looking at this to keep in mind that SBRT, regardless of delivery method, is an enhanced form of radiation treatment which delivers a very precise dose to the prostate at levels that have proven to be very successful in the long term. What you are really comparing here is the use of ion radiation versus some other method such as surgery or HIFU, or proton radiation. Each has its pros and cons.

I suggest you google HDR brachytherapy and read more about the long term prognosis of that treatment when you consider CyberKnife, Novalis, or other ways to deliver SBRT as several studies have shown that SBRT can deliver pretty much the same dosage to the prostate with less hassle.

There is also a physician moderated forum at www.cyberknife.com that I found helpful in answering my technical questions. Of course they are CyberKnife doctors and have a bias, but I think if you read their comments to questions that you will appreciate the balanced approach.

While I am obviously happy with my treatment choice so far, I would encourage you to look closely at several methods of treatment before narrowing down your choices. You are lucky in that your cancer was detected early and appears to be fairly low risk, at least at this point. Each modality has its advantages and disadvantages and you need to weigh those against your own priorities, health, outlook on life, and so forth.

One thing about studies to keep in mind. If you're expecting to wait ten years to see if something works or not, you'll find yourself using ten year old technology. Technical improvements in this field are coming out every day and in many different forms. There are very few head-to-head comparisons of treatments because it is very expensive to do, and difficult to accomplish given the wide degree of factors. I think you should read all the studies you can, but use a high degree of common sense when evaluating the data. In my case, for example, I paid less attention to studies completed in the 90s or before 2005 than I did to studies afterward. I personally like technology but obviously you have to be careful and not buy any snake oil if you don't want snakes.

Hope this helps.

hopeful and opt...
Posts: 1491
Joined: Apr 2009

"There are several long term studies that demonstrate HDR brachytherapy is very effective with over a 95% success rate. The ongoing CyberKnfie trials that emulate HDR brachytherapy show initial results virtually identical results."

Some questions,

What is the treatment option for the patients who do not achieve success in Brachy and in Cyberknife?

Is there a difference of successes among doctors who do these therapies?

How long does it generally take to see negative side effects for brachy and for cyberknife?

What are the differences between cyberknife and brachy, as far as side effects?

Brachytherapy and IMRT are sometimes combined; is Cyberknife ever combined with other treatment?

Thanks,

Ira

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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.

mrspjd
Posts: 694
Joined: Apr 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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%20B%20HDR%20Whitepaper.pdf

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

mrspjd
Posts: 694
Joined: Apr 2010

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.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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.

mrspjd
Posts: 694
Joined: Apr 2010

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.

Swingshiftworker
Posts: 704
Joined: Mar 2010

Here's what my radiation oncologist (RO) told me when I asked him: "What if CK fails?"

He told me would not re-administer CK but would recommend Brachytherapy (BT) as a followup to CK failure. However, you won't know if CK fails unitl at least 1-2 years after establishing a consistently rising (instead of declining) PSA over time and after a subsequent biopsy. After BT, surgery generally is not recommended (but not inconceivable) because of tissue damage caused by radiation. So, IMRT, EBRT, hormonal therapy and/or chemotherapy would be the more likely followup treatments to BT, depending on whether the cancer has spread or not. BTW, my RO would not recommend cyrotherapy, as a follow-up treatment, because of the substantial and indiscrinate tissue damage it causes; particularly to vascular structures (like the vascular bulb) critical to erectile function.

The side effects for BT & CK are similar, but it appears based on anecdotal reports (that I've received) that CK side effects are minimal when compared w/BT.

BT has potentially greater negative urinary, rectal and ED side effects than CK because the radiation in the seeds affects the surrounding area indiscriminately and improperly placed seeds (eg., too high a radiation amount placed too close to critical structures, such as the rectum, vascular bulb and urethra, may cause greater unintended tissue damage to those structures than CK will, given the greater precision of radiation delivery available w/CK. For example, if you can't pee immediately after the seeds are placed, you will have to wear a catheter for a couple of weeks (or more) until urinary function is restored; a catheter is not required for CK treatment because the trauma to urinary function is minimized by CK.

Negative radiation side effects in BT and/or CK will be seen w/in 1-2 years, because it takes time for the radiation to break down the negatively affected tissues. This is also the time when you may see a PSA "bump" (increase) w/BT and/or CK, which should reverse itself if all is well or continue to increase if all is not well.

I hope these additional comments are helpful.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Interesting comment from your doctor about using brachytherapy in the event of a CK failure. I'm pretty sure my doctor said the opposite but will check with him again when I have my 3-month follow-up in a few weeks. I would have guessed that the risk of too much radiation in that area would be a cause for concern but who knows? In any event, as I understand it the few failures to date have been with men who had cancer that had probably already spread beyond the prostate as it seems to occur with men in the higher risk group with a Gleason 7 and stage T2 who have had CK. And if the cancer is already spreading, I'm not sure I get the point of treating the source...you would need to move on to another option. Hopefully, neither one of us will ever have to worry about it. Will let you know what my doctor says.

Beau2
Posts: 249
Joined: Sep 2010

Mac,

You indicated that that you were concerned about side effects. The following link will give you some pretty good information on Prostate Cancer treatment side effects. It contains three lectures by Dr. John P. Mulhall author of the book "Saving Your Sex Life, A guide for men with prostate cancer".

www.mskcc.org/mskcc/html/94910.cfm

MCinNC
Posts: 39
Joined: Sep 2010

Thanks. Those are very good. Simple enough to understand but detailed enough to explain how things work.

Mac

Swingshiftworker
Posts: 704
Joined: Mar 2010

Your stats are very similar to mine and I did a tremendous amount of research that I had to hunt and peck for in order to find out about ALL of the currently available options.

You already seem to have a good overview of what's available. Surgery (open or robotic) is still the most often recommended treatment BUT it is also the treatment with the greatest potential for negative side effects -- particularly urinary and ED related. You seem skeptical about radiation but Brachytherapy (BT) has now been used for years w/success with relatively few serious side effects. However, Proton Beam Therapy (PBT) and CyberKnife (CK) has also made huge advances in the application of radiation in order to treat PCa with minimal side effects. So, don't neglect to look into both of those methods.

FWIW, I and a few others hear (including Kongo and ViperFred, whose stats are similar to ours) chose CK over all other methods. Of tThe 3 men I spoke w/personally who received CK in the past 2 years, experienced NO serious side effects; the 3rd man had some urinary tract problems after 18 months, which resolved themselves after additional treatment. ViperFred, who also received treatment about 2 years ago, also reports here that he has had NO negative side effects, as does Kongo who was treated just a month or so ago.

I am going to begin my CK treatments on September 15th and hope to report similar results as the men above.

Good luck!

MCinNC
Posts: 39
Joined: Sep 2010

Best of luck with the upcoming CK treatments. I bet it there is considerable relief once you have done your homework and are prepared to actually make a treatment decision and get on with it. I'll definitely give CK a good look. Hope you get great results.

Mac

HillBillyNana's picture
HillBillyNana
Posts: 107
Joined: Jun 2009

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

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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.

Swingshiftworker
Posts: 704
Joined: Mar 2010

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!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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.

HillBillyNana's picture
HillBillyNana
Posts: 107
Joined: Jun 2009

Our vacation was great. We drove 4 days to get to WA state. Had a wonderful visit with the kids, grandkids, and great grandkids. Then we drove to the Oregon coast and stayed on the beach for 2 nights. Drove down 101 along the Oregon and California coast. Turned east somewhere near Sacramento. Visited more relatives and went through Yosemite, Mono Lake, Bodie (gold mining ghost town), then across NV on Highway 50. Across Utah, Colorado, Kansas, down into OK and finally to ARKANSAS. In October we are going to NY for a week long tour. Then the PSA test November 9. We are a little worried but this is what my husband decided, and I want to be supportive. I am more inclined to do research and question the doctor than he is, but who is to say? I think the patient should have the say. Thanks to all of you for sharing your knowledge and experiences with us. I know from my experience as a bystander that prostate cancer is not for sissys. You have all been through a lot and it is great that you are willing to share and support others.

HillBillyNana's picture
HillBillyNana
Posts: 107
Joined: Jun 2009

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.

bdhilton
Posts: 759
Joined: Jan 2010

MCinNC,

Medical decisions are personal and difficult and from my perspective the key word here is personal. For myself, and only for me, I opted for open surgery by one of the best in the world (William Catalona out of Northwestern in Chicago)…

From what you say it sounds like you have several options> Make sure you take enough time and seek consultations from several experts in their separate treatment areas. Just remember each treatment runs a risk of side effects so do not go into any treatment choice blind or let anyone tell you anything different…

If you are interested in the open surgery process the following site is an excellent place for information and I would recommend that you purchase Dr. Walsh’s book “Surviving Prostate Cancer”… http://www.drcatalona.com/default.asp

Best to you in this journey and once you make your treatment decision never second guess yourself and believe that it gave you the best results for your individual PCa… Peace

MCinNC
Posts: 39
Joined: Sep 2010

bd,

From your bio, sounds like you had a really great surgeon, and a really good outcome to date! Hope your next PSA continues the good trend.

I've got the book you mention and will take a look at Dr. Catalona's website. Thanks for your comments.

Mac

MCinNC
Posts: 39
Joined: Sep 2010

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

bdhilton
Posts: 759
Joined: Jan 2010

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
Posts: 39
Joined: Sep 2010

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...

bdhilton
Posts: 759
Joined: Jan 2010

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…

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mac,

I think it's difficult to compare institutions or even individual doctors head to head as there is such a wide variation in the types of prostate cancer and the stages that present themselves for treatment. Local demigraphics also play as, for example, a cancer center in certain locales in Florida with a very high percentage of elderly patients may have very different outcomes from another center with a younger population.

Experience of the physician performing the treatment is also a big factor. I think all of us would prefer to be treated by a doctor with hundreds of procedures and years of experience in the field over a new doctor who recently completed residency. If you choose surgery, for example, I think the experience of the surgeon is quite important and many urologists only perform a few RPs each year and most DaVinci surgeons have performed fewer than 50 operations. When the outcome is so dependent upon the skill of the surgeon I would go for plenty of experience over anything else.

My personal opinion is that you ought to figure out what treatment course would work best for you and then start comparing institutions or doctors and devise some sort of ranking system so that you can compare apples to apples and prostates to prostates.

mrspjd
Posts: 694
Joined: Apr 2010

Hi Mac,
In addition to the feedback you already received, some doctors from the larger well known teaching institutions use independent unbiased sources to keep track of & publish their treatment outcome statistics--just ask them if they use such a service. We found this to be true for a few docs at Stanford and UCSF in California. Not only is experience an important criteria in selecting a doc once you decide on your tx, but his/her skill is more important...a doctor can have tons of experience, but if he/she never mastered the skill in the first place, then all the experience in the world won't help.

A great resource for the info you seek is the local PCa support group(s) in your area. These face to face groups are a wealth of excellent info, not only on the best local docs & treatments, but also, statewide and nationally. Most groups welcome wives & family members. Some of the more well known organizations that have support groups in cities nationally are US TOO, MEN 2 MEN (through the ACS), and The Wellness Community. Just google those names to get to their sites and search for support groups in your area. If possible, initially, try to attend several groups, to see which is the best "fit" for you.

You might also want to check out U.S. News and World Report Magazine which rates hospitals and their major depts nationally--including urology depts--once a year in a special issue (which I think was published a few months ago for 2010).

Hope this helps. Good luck.

frankvan
Posts: 1
Joined: Sep 2010

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

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