HealingWell
Search Close Search
☰

Calling realziggy

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/27/2009 4:50 PM (GMT 0)
Dear realyziggy:

I recall from your signature that you were getting the "final" results from your TFT clinical trial treatment in April.  I hope you will share them when they are available and I'm hoping they are great!

Tudpock

Posted 5/3/2009 3:28 PM (GMT 0)
bump...realziggy, are you out there?

Posted 5/5/2009 7:29 PM (GMT 0)
Hey Tudpock. I am well the biopsy came back all negative. All I do now is to get an annual psa and dre exam. I took off a week to celebrate. I've looked in here a few times and I'm done with this site. It's now more than ever a surgical site. Which is fine for those with advanced PCa. But as I see those with low risk PCa volunteering for radical surgery I just get depressed at the thought of the IMHO needless butchery. When I just advise someone who is undergoing a radical DaVinci 6 weeks after biopsy to take more time studying other options before deciding, and get accused of giving out medical advice I admit I've had it. A quick glance at the HIFU threads gave me a deja vu with my past here.

I don't know if you feel still as supported as you did earlier with your Brachytherapy Tudpock. Maybe you still do maybe not. But most here do feel your choice of treatment to be inferior to theirs, and in time you will get that feeling I bet.

The recent released studies concerning psa tests and over treating PCa I along with many PCa exerts agree with. The fact that well respected doctors and organizations who back them are declared to have ulterior motives on this site confirms what many urologists have said about in them. Many radical treatments for low risk PCa are not needed and in fact are more for treating anxiety than the cancer itself.

With those beliefs I realize it's time for me to go. This is a wonderful site for those with advanced PCa. For those with low risk PCa this site can be not only scary but possibly tragic for some and their future quality of life. So thanks all I wish you all well, but I'm gone. I can no longer hold my tongue so best I don't post or read at all.
Posted 5/5/2009 8:24 PM (GMT 0)
Realziggy,

I hope you’ve stuck around long enough so you can read my best wishes! Good luck to you and enjoy what seems to be the real start (finally) of spring here in Denver.

Best…..
Posted 5/5/2009 9:04 PM (GMT 0)

I for one wish you would reconsider and stay, we need ALL people here and ones who have chosen different paths other than surgery.

 For someone who does NOT have Pc, at least not now and I hope I do not get it but I like to read and see everyones choices. I know it has been said many people jump too soon for surgery. Again I like to see ALL sides of the option pole, pls stay

Posted 5/5/2009 9:51 PM (GMT 0)
For all those that are new or fairly new, this is not a pro-surgery site, reagardless of what some may say. You will find more about surgery or surgical aftermath or surgical related side effects, because surgery, whether it be open or robotic, is the number one treatment in the U.S. for treating PCa. That is just a statistical fact, not a statement on reasons or philosophies. Convential radiation is number two in number, also a fact.

I personally feel that Bro. Tudpock's "Seed" treatment has been well received here, and he is very much supported and appreciated. It is not the most common path of treatment, but one that well suits certain people with certain stats.

Most people here are open minded, whether they are our new friends, or some of the "ole timers", those with low grade diagnosis all the way to those with extreme advance cases.

I do grow weary of hearing the allegedged bais here towards surgery, again, it is the most chosen path for treatment, and has for decades.

Most of us are interested in new treatments, even those not yet approved by our FDA, new drugs, new clinical trials, etc, as none of know if we might need to be the next to try something unapproved or way outside the box.

This is a good place, hardly a place where one treatment method is set in stone.

David in SC
Posted 5/5/2009 10:08 PM (GMT 0)
realziggy,
Despite being a surgery patient myself ( in my case I believe it was a necessity) I would be greatly disappointed if you no longer contribute. I think you are mistaken in your belief that this site is pro-surgery and biased towards that, although the majority of members have taken that route. It is essential for the newly diagnosed, particularly those who receive a biopsy result showing small quantity, low grade tumour which was conducted based on a relatively low PSA that they receive the type of information and opinion that you have to offer. As to the HIFU discussion if you read between the lines you can see that that discussion was not about the pros and cons of HIFU, nor seeking information from some who may have trod that path, but rather the suspicion of long time members (both radiation and surgery) was that a couple of new members (who incidentally made no mention of their personal diagnosis) were playing tag in simply pushing HIFU as the new wonder cure (with a large dose of paranoia about government secrecy thrown in). In cases like that the odds are that this invaluable site is being used by those completely lacking in human decency to advance the treatment purely for financial gain rather than any attempt at being informative. I sincerely hope you will reconsider.
Bill
Posted 5/5/2009 10:31 PM (GMT 0)
Realziggy, I also hope you stick around. Alternative viewpoints are welcome -- even though it is too late for me!

Being "cured", I mostly just lurk here, and only post occasionally now. But even though I had surgery, I agree with you -- there is a lot of over-treatment for the lower grades of PCa.

We need people pushing the alternatives too (but not for their own financial gain!). Please stay.
Posted 5/5/2009 11:14 PM (GMT 0)
Real Ziggy,

I though your story was very inteesting. I also have to believe there must be a better alternative to surgery and its lasting side affects for low grand early PC. It wasn't that long ago that mastamies were the gold standard for breast cancer. Hopefull it will also be true for prostate ca.
I know the main arguement used by many is that the new local treatments don't have long term data, but if we waited for 15 years to get long term data we will all be dead. I would gladly take the chance for a local cure that looked promissing with few side affects than submit to a local cure that has long term data and also well proven side affects.
JohnT
Posted 5/6/2009 1:35 AM (GMT 0)
realziggy,

hang in here. I had surgery last year and my brother had seed implants 2 years ago. We have interesting conversations regarding side effects, etc. I chose surgery mainly because I had high grade and he chose seeds because he had low grade and he was convinced that was the right answer for him. the night before surgery, he kept telling me to cancel the surgery and have seed implants. I have learned a lot from him and he has learned a lot from me. What I am trying to say is to stay with the site and contribute.
Posted 5/6/2009 2:50 AM (GMT 0)

Dear realziggy:

First of all, congratulations on your results!  Honestly, since we had not heard from you in awhile, I was a little afraid that the news was not good.  I was VERY happy to know that things went so well.

Secondly, I hope you decide to stick around after all.  I do agree with some of what you say about this site, but I'll challenge you on a couple of points and hope you take me up on the challenge.  I DO think that this is a great site for those with advanced PCa.  There is great knowledge here as well as support.  I also agree that many of the surgical patients feel their choice is best...and I find that to be ok as far as I am concerned.  But, I also continue to find that most of the surgery guys advise newbies to look at all alternatives before making a decision. 

And, do I always get support for choosing brachytherapy?  No, nor would I expect to. It's a diverse world with lots of opinions.  Last week I had a bit of a tiff with a poster who stated that brachy was for 85 year old men with cardiac and renal problems who could not find a surgeon and described brachy as a "shot in the dark".  I could have let this sit but my fear was that someone new to this site would believe that load of crap.  So, I took the time to correct the poster and guess what...my rebuttal was met with several supportive posts from surgical patients who helped me correct the faulty research done by the original poster.

My point and challenge to you is this:  This site needs information about diversity of treatment and needs diverse opinions.  Yes, it can be a bit frustrating to be in the minority but so what?  Newbies need to know that the choice isn't only cut or burn.  You brought the first hand experience of a whole new protocol about which I'll wager most here knew nothing (I certainly didn't!).  Don't you think that revealing that option to newcomers here is valuable?  Who the heck else here is going to be a champion of TFT if not you?  Don't you think new guys who are scared to death need to know first hand about the various options? 

OK..I'll get off my soap box.  I would simply encourage you to stick around to challenge the crap when you see it, and share your valuable experience with those who need it the most.

Good luck and I hope to see you back here (I know you must be lurking anyway just to see how people responded to your post!).

Tudpock

Posted 5/6/2009 4:20 AM (GMT 0)
Very well said Tudpock,
There will be much more conversations and enthusiasm about surgery here because it is still the most common modality ~ good or bad. And no one wants to feel, or be made to feel, they made a bad decision. Same goes with radiation, cryo, HIFU, seeds, and the occasional guy who shows up with recipes out of the 19th century. If people are serious about their treatments, they will be vocal about why they think it's the best one.

Ziggy ~ We have one cryo TFT guy here and you are it. Stay and tell people about it. I would prefer that we had more but at every site I am a member of the story is the same with TFT. One or none.

I would also prefer that no one's decision on treatment failed them or made them feel uncomfortable here. Unfortunately the gentleman who came here this week touting HIFU came to us very aggressively and had seemingly vested attitude about conspiracies and such. Had he come here and posted his experience and treatment modality with more accuracy and less embellishment and advertising he would probably still be here and found acceptance. I have reached out to him hoping he will respond and take another shot at things. But if he goes to other sites and starts out like he did at this one, I doubt the internet forum experience will be good for him at any website.

Tony
Posted 5/6/2009 5:25 AM (GMT 0)
I've never felt my husband subjected himself to butchery when he chose surgery. He made a sound decision based on what was available to him at that time. After seeking several opinions Paul was able to comfortably decide what was best for him. Based on what he knew about his clinical diagnosis, past medical history, and the medical specialists in our region, surgery was his best option. I assume pretty much everyone does the same.

Disagreements are a part of the problem solving process. I teach differential impressions to future EMS workers. It's simply a method of identifying the unknowns. In our case here at Healing Well, we are able to bring into view some things that may never have been realized alone. I hope our forum never stops agreeing and disagreeing. I believe we do the future of cancer treatment a good turn when we take our ideas back to those who are in a position to make things happen.
Posted 5/6/2009 5:32 AM (GMT 0)

Ziggy:

I hope you stay.  How else do we know what works and what doesn't?  I think we all feel passionate about offering our best advice to the newly diagnosed, who really need our help.  We all have other things to do with our lives (other than staying up all night posting to these forums!), especially now that most of us are past it and are moving on. 

 I think we post here because we all want to help others make the decision that is right for them.

It's a tortuous decision, compounded by fear, urgency, and any number of well-oiled machines pushing their particular treatment options.  It's big bucks for urologists, surgeons, oncologists, equipment providers.  Our bad luck is someone else's great fortune.  That's OK as long as we're not talked into driving a Hummer when all we wanted (and needed) was a Honda Civic.

The information available is endless, conflicting,  and the "professional" advice we receive is not always in OUR best interest.  A forum like this allows the newly diagnosed to

1.  Understand that he will probably be OK - there IS life after PC;

2.  Encourage him to inform himself in depth about the various treatment options;

3.  Find the treatment option that is right for him, and THEN  find the brightest,  motivated, and most competent treatment provider for whichever option he chooses.

As someone pointed out yesterday, everyone is different, each cancer is unique, needs and expectations vary tremendously, and NO one option is right for everyone.  Couple this with an everchanging PC landscape, and our newly diagnosed brother needs every bit of help he can get!

Ziggy:

You didn't say anything about continence and erectile function after the Cryo.  I know that we are all interested.  One leg of the HIFU trialing last year was to demonstrate to the FDA that HIFU is superior to Cryo.  Were you in one of those trials?  It sounds like you had a great experience -and saved a pile of money. 

I'm beginning to think that it is very much about the quality of the provider, whatever option you choose.  Any thoughts here?

 

Posted 5/6/2009 7:27 PM (GMT 0)
It was waaaay back in June of 2006 that a single post here was the first we'd heard of robotic surgery. With that single mention, our world of research into treatment options expanded greatly. As Swim said, that route was - at that time - the right one for us. How exciting to find alternatives to our limited knowledge base!

The point is - someone passing through HW might only need a mention of a new avenue to try in their quest. Who knows? It could be the posts above that provide answers down the road for someone.

That's why it's so important to cover all avenues, even if some are in the minority. You never know who you're going to help.
Posted 5/6/2009 7:51 PM (GMT 0)
Hi Ziggy, I'll put my hand up and admit to Brachytherapy, a decision not taken lightly. I was DX in 2003, low grade PCa, so I watched and waited and actively surveill'ed, last year because my indicators were that the PCa was getting more active I chose seeds not because I am old and decrepit but because I did not want to be laid low for 6-8 weeks with alternative repair work. If you want to wash your hands of the new bros' who are asking for help and advice in their hour of despair then leave the site, but if you do you will never know if there was just one person you could have helped who would be eternally grateful for your pearls of wisdom, just my 2c worth.
chris nz
Posted 5/6/2009 9:21 PM (GMT 0)
Hey Zig,

My surgery wasn't butchery any more than your treatment was snake oil. I always wonder what the hidden agenda is in folks that resort to name calling for other people's treatment choice.

Jim
Posted 5/6/2009 9:23 PM (GMT 0)
A wise man once said "we can be part of the problem or part of the solution."

"He who listens warns his village. He who listens but to his own thoughts hears not the strom approaching : >)


:>) swim
Posted 5/7/2009 4:33 AM (GMT 0)
oopps....spelled storm wrong....and I was so on a roll :>)
Posted 5/7/2009 5:32 AM (GMT 0)

I ran my numbers through Sloan-Kettering's pre-treatment nomogram again.  I realized I missed an important part of the calculation the first time through.  There is a button at the bottom of the page called 

     Advanced Details  (for Medical Professionals).

http://www.mskcc.org/applications/nomograms/Prostate/PreTreatment.aspx

This opens up another page.  Entering prostate volume made a big (for me, positive)  difference in the prognosis.  I suspect that it had to do with PSA number vs prostate volume.

 There are opportunities to enter the other details from the biopsy (have your biopsy report handy) to further fine tune the prognosis.

Despite claims of equal survivor rates across treatment options, my  "Progression Free Probability at 5 Years" was 97% for RP, but only 87% with Brachy; at ten years a 96% progression free probability for RP, and for Brachy no 10 year prediction was available.

This prognosis is only going to be as good as the accuracy of the numbers from the biopsy.  John T's suggestion of more cores might really make a difference in obtaining a true picture of the location and extent of the PC   --and ultimately enhancing the quality of the treatment decision.

Posted 5/8/2009 6:23 AM (GMT 0)
sorry to see ya go realziggy. I appreciate your help and phone call. The guys at CU are great. Real happy your results were good...........bob

Posted 5/9/2009 12:40 PM (GMT 0)

With his biopsy stats, and gleason, and his age, and I am assuming he has no other major medical ailments, I myself would opt for surgery, either robotic or open, with a very experienced surgeon. Surgery before radiation in this case would make much more safe, and be more logical if any cancer cells were on the loose after the fact. Salvage sugery is not a good option in most all cases.

The other advantage to surgery at this point, is that you will more likely know the full extent of his cancer after the post surgical pathology report, and know pretty well if it was or wasn't contained.

Realziggy was/is right. This is a recent post from Purgator to a newly diagnosed PCa patient looking for help. If this is not bias then I'll eat my hat. So long for me too. Hopefully these people are not just visiting this site for help. Bye

Posted 5/9/2009 12:59 PM (GMT 0)
oldetimer, adios amigo. i love it when people like you take what i say and isolate it out of context. compare what you quoted to the original poster and look at their stats, you will see that it makes perfect sense. and did i say anything that wasn't true? and no one said it was the only answer, the key was "I myself", not "this is what you should do". Good luck with your upcoming Proton Beam treatment, if it works as well as it is advertised, it could be a good alternative to surgery. Gee, does that surprise you to hear me say that?

david in SC
Posted 5/9/2009 3:40 PM (GMT 0)

Dear Oletimer:

Sorry to see you go...too bad you are not willing to stick around and share your PBT experience.

However, I must agree with David (Purgatory) on this one.  David provided a perfectly legitimate and logical point of view.  As a "non-surgery" guy, I was not offended in any way whatsoever.  And, as a "non-surgery" guy, I can tell you that I think you and realziggy are much too sensitive about the comments made from surgery guys.  What is the heck is wrong with people expressing their opinions?  If you or I believe the opinion or facts provided by a poster are incorrect, we are free to challenge and/or correct them.

Anyway, I'm sorry that both of you are taking off as I think your non-surgical perspectives would be helpful to new members.  But you gotta do what you gotta do...

Good luck,

Tudpock

Posted 5/9/2009 9:47 PM (GMT 0)
Oletimer,
Where are you going to? Your issue is not a HealingWell issue. With exception to ProtonBob.com I have observed the same things at other sites you are feeling remissed about. For the good of this site and all the others, you chose the road less travelled, please stay and tell us about your progress. Just like the Brachy guys, the HIFU guys, and cryo TFT guys, you are the ambassador here to that modality. If you leave then that's one less that speaks about it and it lessons the impact of that modality decision you feel strongly about. That seems counter-productive to me.

Tony
✚ New Topic ✚ Reply