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88 Seeds and Feeling Good

robert1
Posts: 82
Joined: Apr 2011

After 28 sessions of IMRT/IGRT, I received 88 Iodine 125 seeds Wednesday and I'm feeling good. There was some soreness, but that has almost gone completely now. I was doing phone and computer work the same day.

Dr. Sylvester tells me his norm is about 94 seeds, but my prostate had stayed relatively small so 88 seeds is all that were needed. I am expecting to max out with potential urinary side effects in about 2 weeks. We started Flomax one week in advance, so hopefully any issues will either not happen or will come and go quickly.

I did so much study and focused so hard on long-term cure rates for various treatment choices. My life resumes with complete confidence. There is no treatment with better long-term results and my doctor and I are totally proactive regarding short and longer-term side effects. I pray his aim was true, as yesterday's CT Scan confirmed, and look forward to a full and complete life.

Thank you for all of your help, advice, and well wishes. Know it or not, I could not have done it without you.

Very truly yours,

robert1

VascodaGama's picture
VascodaGama
Posts: 1598
Joined: Nov 2010

Thanks for sharing your experience. I hope you get a remission diagnosis and that you return to your life routine the soonest.

Wishing you a complete recovery.
VG

prezmic
Posts: 36
Joined: Jul 2011

Thats good news Robert. I wish you the best.

I have my seed implants scheduled in 3 weeks after 25 IMRT's. Glad to hear it is going well. I expect the same.

hopeful and opt...
Posts: 1364
Joined: Apr 2009

Can you please site your source(s). Thanks

robert1
Posts: 82
Joined: Apr 2011

Hello hopeful:

Sources for what exactly? Cure rates? I consulted a dozen differnt doctors and Centers of Excellence around the country, read countless studies (3rd party and private), and listened to the oncologist I chose (who will publish a 99.1% seven year cure rate this year).

Please let me know how I can help.

robert1

hopeful and opt...
Posts: 1364
Joined: Apr 2009

I was thinking that you might be able to post a study, etc, a citation that would quantify the success of the treatment versus other treatments, and comparison of side effects.

99.1 percent is an excellent cure rate. Which institution is Dr. Sylvester associated with?

Congratulations on coming to a conclusion after your extensive research.....well done

robert1
Posts: 82
Joined: Apr 2011

Hello hopeful:

Dr. Sylvester was formerly with Blasko, Grimm and Sylvester in Seattle. These guys were the pioneers of Brachytherapy and are considered the best-of-the-best. He relocated to SW Florida from Seattle a little over a year ago, thank God, and set up a practice as Lakewood Ranch Oncology in assocaition with Florida Urology Specialists.

His latest study and cure rate will be published in Cancer before year's end, but there are many studies about Brachytherapy with several that compare it to other treatments. Goggle offers is a wealth of information. Too much maybe.

When making my treatment decision, it was clear that there are fewer serious side effects than with surgery (especially incontenience), and maybe a few more than with proton or cyberknife. The treatment I chose offered a better long-term cure rate than PBT or CK, especially for intermediate risk guys, so I decided on the trade.

Best wishes,

robert1

hopeful and opt...
Posts: 1364
Joined: Apr 2009

Here in So. CA., I've met men who have gone to Seattle for treatment. The group is very well respected, and are considered by many to be the experts....very good choice!

mrspjd
Posts: 693
Joined: Apr 2010

Robert,

Glad your tx of LDRB (low dose rate brachytherapy aka permanent seeds) with IMRT has been completed successfully and that things are going well.

In my opinion, LDRB w/IMRT is one of many viable PCa tx choices, especially for some intermediate/high risk clinically staged cancers. Let me be clear--I’m in no way questioning, challenging or critical of your tx choice. In fact, from reading your previous posts, you appear to have made a solid tx decision based upon research that I would agree has good long term study-based evidence to support its success rates, with low rates of BCR and side effects.

I was, however, curious about several, rather emphatic, assertions you’ve posted pertaining to the “superiority” of LDRB w/IMRT for intermediate risk PCa. For example you indicated LDRB w/IMRT is “…superior to any other surgical or RT choice.” (http://csn.cancer.org/node/225435#comment-1115306) In another post you advise that “…odds may be best with a combination of IGRT and seeds.” (http://csn.cancer.org/node/224205#comment-1108536). And here, in this thread, you claim “There is no treatment with better long-term results…” (http://csn.cancer.org/node/228385)

If study findings are available in published peer-reviewed medical journals (I was unable to find any) that specifically state a PCa tx protocol of LDRB/seeds with IMRT is “…superior to any other surgical or RT choice” and “there is no tx with better long term results” for intermediate risk PCa, then, like the previous poster, I, too, would be interested in learning the source and reading the study findings. If you have a specific study reference source for those statements, would you mind sharing it with the forum?

As you know, we also did extensive research prior to my husband deciding on a tx protocol for his intermediate/high risk PCa staging, albeit, it was a different tx choice from yours (http://csn.cancer.org/node/217480#comment-1117294). And, as you did, he had complete confidence in his tx decision along with a medical team he trusted. Most likely, we all reviewed many of the same studies but arrived at different conclusions or interpretations resulting in divergent opinions about tx choices. Nothing wrong with different opinions. Come to think of it, perhaps your statements might represent your personal opinions based upon the study data you researched and reviewed. The task of sorting out PCa facts from opinions is often confusing and challenging at best (http://csn.cancer.org/node/224205#comment-1117606) and fact checks are always a good idea (http://csn.cancer.org/node/224205#comment-1118071).

Saying that tx decisions are tough is an understatement. It took my husband almost 3 months of carefully evaluating research data, etc. before he made a tx decision that was right for him. IMO, once a decision is made, another factor comes into play—something that might be called the “belief factor,” or the “self-fulfilling prophecy” or “mind over matter.” No matter what you call it, essentially, every patient undergoing tx has to believe that the tx he has chosen (hopefully after much research, multiple medical consults, etc) will result in a “cure,” of being cancer free with no recurrence (BCR/F) or, at the very least, that the tx will provide the “best possible successful outcome” with the least possible harm and the fewest short and long term side effects.

I fully understand and appreciate this necessary positive mindset which may also play an important role in the post-tx recovery process. However, it’s understandable that this positive thinking also may lead some patients to be “defensive” or “protective” of “their” tx choice, taking ownership, possibly by overly promoting it, perhaps as a way to affirm that they made the right choice or that it was successful for them, especially when several viable evidence-based tx options/alternatives may exist. And that’s OK in my book, as long as we can differentiate between fact and opinion by providing reference sources from peer reviewed medical studies/journals. One only has to read a few back pages of this forum to find several heated discussions/debates on the merits of one tx vs another based on interpretations of various (or even the same!) study data.

As most posters realize, when it comes to PCa, one tx does not fit all varieties of PCa, all stages of PCa, or all types of men. There are so many variables to be considered when evaluating tx options.

Robert, I believe that you have much to contribute to this forum and I look forward to reading your future posts. Best wishes and good luck on your journey.

mrs pjd

robert1
Posts: 82
Joined: Apr 2011

Hello mrspjd:

I have been traveling on business, so please forgive my delayed response. This board should be a daily event for me. I really appreciate your kind words.

You are absolutely correct about patients and survivors defending their choice. I took a long time (5 months) to make absolutely sure that I was playing the odds. I will reference the most compelling evidence when I get back home, but much of my decision was based on easily accessable cure rate data for proton therapy, cyber knife and brachytherapy. I wish I could just attach documents. This information also includes results for surgical patients, although the surgical stats were much more difficult to believe and interprete than others. In addition to consultations, I ending up speaking directly to 19 surgical patients/survivors from the best surgeons I could find. About half were not referred to me by the surgeons. I also spoke directly to 28 brachytherapy, PBT, CK and IMRT patients/survivors. This feedback was very important in my decision.

Dr. Sylverster was the only doctor I spoke with that offered hard and clean evidence, all with third party scutiny, about brachytherapy with comparisons to other treatment choices. Long-term results (minimum 10 up to 15 years) for intermediate risk patients was absolutely critical to me. I am 55, and hope to live a long time. Ten year results don't even exist for some treatment options, so those choices were dropped from my short list. Some would disagree with this logic. I was begging for this information and took the time to confirm it.

Everyone told me that this is the most personal of decisions, and that is absolutely correct. If I have come across as defensive in any way...my apology. Being who I am, I can never be overly confident about this choice. I will be looking over-my-shoulder for the rest of my life. After experiencing the 25% chance that I had PCa (based on my PSA level), it is difficult to trust even the best odds.

Best wishes to you,

robert1

mrspjd
Posts: 693
Joined: Apr 2010

Robert,

Thank you for your reply. Not sure if it's a matter of semantics, but with all due respect, I think you know that my post was NOT about your tx choice or a request for citing add’l sources of studies to validate and support the tx choice you made. Also, my post was NOT about a request for referencing the “…most compelling evidence…” or “…easily accessable cure rate data...” or “attaching documents,” since published studies & links are available online and most here are very capable of performing thorough internet or Google searches.

Our personal PCa journey took us on a similar path of indepth research and education and most likely, we've reviewed many of the same studies. No doubt you'll post the info as you indicated. It will be informative and helpful for many.

I’m sure you’re aware that my post was about several, IMO, unrealistic assertions you've made that the PCa tx modality of LDRB/seeds with IMRT is “…superior to any other surgical or RT choice” and “there is no tx with better long term results” for intermediate risk PCa. We both know these specific statements are not study findings/facts cited in any published peer reviewed medical journal. They are personal opinions based upon your interpretations of the research, and IMO, should be clearly prefaced as YOUR opinion (i.e., IMO or IMHO). Hey, if there was one tx that was superior to any other surgical or RT choice with no better long term results, we could close down the PCa forum, pack up, and go home. Oh wait, I’m already home.

I understand your need to share/promote (often and with great joy, excitement and triumph) the name of your treating doctor as well as the name and location of his medical practice. It’s probably just another aspect of the “belief factor” but, I hope you can understand why that tack might be viewed as an advertisement or commercial (as unintentional as it might be). Personally, I do not believe in publicly posting that info as, IMO, it detracts from the credibility of the individual PCa journey. However, my husband & I believe it is appropriate to share that personal info (doctors' names, etc.) confidentially and privately via CSN email.

I’ve read your previous threads/posts and hope others will take the time to do the same (use the CSN search box feature with a keyword such as “robert1”). Thanks for previously citing research sources and sharing your decision process. I'm sure many readers will find it helpful. It’s obvious that you’ve done your due diligence in analyzing tx options before arriving at a PCa tx decision that was right for YOU and the nuances of your unique PCa staging. However, I submit that many other informed posters on this site have done the same due diligence, yet arrived at a different tx decision than yours, and would argue that their tx (or loved one's tx) was equally “superior” with equally impressive long term results and study data. There are also those who have posted on the forum about the failures & complications of their LDRB w/IMRT txs, but, as you, I realize every PCa tx has its horror stories, even with the most experienced and skilled PCa doctors.

I continue to look forward to your future posts, although I hope that your opinions will be clearly differentiated from research study facts. Putting aside the “fact vs opinion" issue and semantics, you might be surprised to find that we agree on more PCa topics than you might think.

Best,

mrs pjd

robert1
Posts: 82
Joined: Apr 2011

Dear mrs. pjd:

As I mentioned previously, I can back up everything I have posted. It is unfortunate you posted some negative statements after I responded and told you it would be my pleasure to send this information to you upon my return from extended travel.

We could go back-and-forth indefinately, however I have a summary document comparing treatment choices that explains and supports my prior postings. This is a summary of thousands of studies, however it is not difficult to find PBT, CK and other RT results and compare them. When you are an intermediate risk guy like me, every comparison of treatment choices leads to one conclusion. I am not suggesting everyone do what I did, but everything I have posted here is backed by fact. It is not a link, so please let me know the best way to get this file to you.

You are certainly welcome to your own opinions and your own journey with your husband, but in my opinion, this site is 100% suitable to get to the facts of the matter. These study and results comparisons are few and far between. Through the noise, this is exactly what newly diagnosed PCa patients are looking for.

It is natural to post your doubts, but please be sure you are 100% correct before posting that I have made "unrealistci assertions". My statements are indeed supported by "study findings/facts cited in any published peer reviewed medical journal". My referenced interviews with dozens of survivors completely confirmed this data.

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

Robert,

I appreciate your reaction to what you must have perceived as an attack on your credibility. Frankly, I too have rolled my eyes at some of her assertions about how some men who post here should present their views on the various treatment options. On the other hand, mrspjd makes many good points about the fuzzy lines between fact and opinion.

In the past I have challenged some of your assertions too but overall I think your experiences are very instructive for men with a similar diagnosis and ought to be considered when they contemplate their own individual situations.

This forum’s purpose, according to the published governing guidelines, is to allow a peer-to-peer exchange of information about surviving prostate cancer based on personal experience. Frequently many of us cite studies or summaries of readings in general to underscore the points we’re trying to make. Men who are considering treatment choices can then read the article and draw their own conclusions about the veracity of the information and whether or not it is germane to their individual situation.

I think the rub in your case is that you have made some pretty specific statements that at the end of the day seem to be based on your individual analysis of papers you have read and doctors you have spoken with. Certainly all of us make our treatment decisions based on this type of analysis but where I believe you should consider drawing the line is making sweeping general statements that suggest your particular choice is better than any other treatment decision. I certainly believe that it was the best decision for you given your unique situation and individual diagnosis but whether if is best for all men with a similar pathology is another matter entirely.

Sorry, but general assertions based on a doctor who will publish something about a 99% cure rate in the future is not something I personally would base a decision on. What was the study protocol? What were the demographics of the cohort used to draw these conclusions? How big was the study? How was it compared to other treatments? When you state that your research found that your choice of IMRT and seeds exceeded cure rates for both CyberKnife and Proton but do not cite the studies you are basing this statement on it makes me wonder whether you really read all the papers or maybe only one or two or someone else’s interpretation.

I applaud your efforts to talk to as many doctors as you have and interviewed so many men who have had similar treatment. I am sure this background gave you a great deal of confidence in your ultimate decision choices but it’s hardly a scientific method of analytic comparison. When you discuss going with the odds, you didn’t address what method of statistical analysis you used.

Every man diagnosed with prostate cancer is a unique case. We are all at different ages, different pathologies, have different prostate volumes, different PSA dynamics. Some have a family history while others do not. Some are young men with young children at home while others are in their 70s or 80s. We all have different perspectives on what risks we are willing to take, whether or not we had urinary or ED issues before diagnosis, and how comfortable we might be knowing that cancer may be growing in our bodies.

Each of us must make our own decisions based on our individual situations and understanding of the threat prostate cancer poses to our view of life. For example, when I considered brachytherapy I read a book titled “How we survived prostate cancer” by Victoria Hallerman, which is an account of one couple’s journey to treating PCa with seed implants. After reading that book both my wife and I had a more negative impression of the potential negative impact of brachytherapy than before. It basically dropped several limbs down my decision tree. I followed up with talking to men I knew who had also had brachytherapy but I didn’t change my mind.

Please understand that I’m not trying to diminish your research or conclusions. My personal opinion is that you would find a more receptive audience if you couched your conclusions along the lines of “after my research I felt the best choice for me was __________” and encourage others to look at the same information you did and draw their own conclusions. Citing the studies you used to draw your comparisons is essential to enabling others to make an informed decision and not just take your word for it.

Best to you.

K

mrspjd
Posts: 693
Joined: Apr 2010

Robert seems upset. Kongo is rolling his eyes (his words, not mine). And I’m shaking my head. (Sounds like a road show--just joking.)

No joke: Everyone is entitled to their own opinions but not their own facts. For now, looks like we’ll have to agree to disagree about facts vs opinions re LDRBrachy seeds w/IMRT or CK or whatever.

Many posters to the PCa forum often share/post internet links to study data & other info related to PCa. IMO, that’s another great way to learn about various aspects of PCa and can open the door to new discussions, different perspectives and a wide range of opinions.

There's nothing wrong with different opinions. Someone once told me “That's the American way.”

Be well,

mrs pjd

robert1
Posts: 82
Joined: Apr 2011

Hello All:

I indeed consulted many many sources when making my treatment decision. This includes studies on surgery, LDR & HDR Brachytherapy, IG/IMRT, conbination therapies PBT, CK, etc. The results of these studies are factual given their source and peer review. The RT results appear to be more black & white relative to surgery. Much of this is because most surgery is robotic now and Robotic RP has a relatively short history.

I have made some straight-up statements in my posts, but rather than questioning the accuracy and/or intent of these posts, please specifically indentify where I am wrong. My sole purpose is not to push any treatment option, but rather to help guys that find themselves in the same place I did a few months ago. I would have killed for a valid comparison of treatment results for the various risk catagories.

Open surgery and Brachytherapy are the only treatment options I found to have 15 year well documented track records. As stated previously several times, this was very important to me as I hope to live for many years to come. More, but few, even have well documented 10 year track records. Of those that are well documented and have long-term track records (10-15 years), Brachytherapy comes out on top. Facts are facts. My mention of a study to come in Cancer this year is also factual. I simply shared this impressive 7 year cure rate data with everyone here in advance of publication.

As I also mentioned several times, I am not certain this would have been my path if not for my intermediate risk staging. PBT, High Dose Brachytherapy and CK all look very impressive to me.

Again, there were hundreds of sources and interviews that factored into my decision but none any greater than a comparison of various (not all) treament options for low, intermediate and high risk patients. While this is not common, to help clarify my statements and assertions, I would be pleased to share this summary "study of studies". My e-mail address is rdean59671@aol.com.

To continually refer to facts as opinions does not help the discussion. I invite doubt and discussion but do not believe it is proper to question someone's statements or motives without a specific and opposing response.

This journey is not all about opinions. For me, and for many guys, it is about facts. Many are out there for the asking.

Thank you,

robert1

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