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Old 05-07-2009, 07:52 PM   #1
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Newly diagnosed, looking at options

Folks:
Like most of you, I recently had the diagnosis of prostate cancer. I have to admit, this was not the best day of my life. Nor have the follow-ups been either. However, from reading here and other places I am beginning to understand that rather than a death sentence, I am looking at a chronic illness that needs to be managed.
I have not begun treatment yet, but will soon and I would like to better understand what I am looking at.
My PSA was 13, on retest it was 16. I went in for a biopsy, 12 samples taken. Of the 12 samples, 6 on the right side had Gleason scores of 7, one on the left had a Gleason score of 8, the other samples showed no cancer. Upon direct rectal exam, the surgeon said that there was a hardening on the right side of the prostate, but he didn't think it was enlarged. I am getting a CT scan tomorrow.
I have spoken to two surgeons and one radiation oncologist. As you might expect, both surgeons thought that it would be best to have surgery. The radiation oncologist disagreed, and thought that external beam radiation treatment with hormonal therapy was the best choice.
So I have some questions.
First, am I right in thinking of this as a chronic disease? Most of the morbidity statistics indicate that someone with the results I have (PSA and Gleason scores)will probably be able to live disease free for quite a long time. Second, what are the experiences of people out there who have had the radiation and hormonal therapy? I have a reasonable appreciation of the issues with surgery, but the issues with the radiation and hormonal therapy are still murky for me. How unpleasant is the hormonal therapy? When I mentioned the therapy to my wife, she laughed and said that now I get to find out about hot flashes. (She is very supportive, but I have to say we both have a weird sense of humor. )
I know that most of you are not doctors, so I won't ask you to give me an opinion about the different treatment options, but perhaps one of you could point me to some published literature that discusses the pros and cons of the different options? When the radiation oncologist says radiation is the best approach, and the surgeon says surgery, it would be nice to have a neutral party that can address the issue. As my wife also said, when you ask a Chevy dealer about cars, he isn't going to recommend a Ford.

Thanks

Jim

 
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Old 05-08-2009, 11:04 AM   #2
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Re: Newly diagnosed, looking at options

So sorry you had to join our ranks.I know you'll receive more detailed answers from those of us given to longer more referenced responses. When I was first diagnosed I felt overwhelmed by all the conflicting advice and medical opinions each reflecting the specialist's bias. So i'll try to keep my answer simple although not simplistic--I hope.
There are essentially 3 reasonable and responsible options which you know:
!. Surgery, 2. Radiation 3. Active surveillance each of which are available for early stage, localised prostate cancer. Various protocals of hormone therapy are also available but this is usually reserved as a backup treatment if the primary therapies fail although in some rather challenging cases it can be primary therapy.
Your case seems to fall in the moderately aggressive category which argues for considering one of the potentially curative therapies which includes surgery, one of the forms of radiation therapy either, IMRT, Proton Beam or Brachytherapy (Seeds).
I don't consider Prostate Cancer as a chronic disease until and unless it advances to an incureable state such as regional spread to surrounding tissue outside the prostate capsule or metastasizes to the lymph nodes. It is still potentially cureable even when it has penetrated outside the capsule , though not too extensively.
Given that a permanent cure may be in your future if your cancer is organ confined I would lean toward one of the local treatment options --surgery or radiation. My bias is for surgery because its what I chose 8 years ago and it was completely successful with minimal side effects---no incontinence ever and temporary E.D which recovered to about 80 % of pre-op. Have had undetectable PSA's since treatment in 2001.
Proton Beam therapy which you'll hear about from its principal advocate can I'm told be as successful though with a more limited track record as is true of IMRT radiation therapy.
You will also hear about the benefits of Active Surveillance although I personally am still skeptical about that option for an otherwise healthy man with more than 15 years of reasonably expected longevity. I'm skeptical about A.S because of the risk of missing the curative treatment window and the accompanying anxiety of careful monitoring, periodic biopsies and the knowledge that there's a cancer growing in you. Not for everyone but definitely for some, especially those too medically compromised to withstand primary treatment or too old to benefit from it.
Your Gleason 7 on one side and Gleason 8 on the other would also sway me toward an aggressive and potentially curative treatment option.

The best advice I can offer is to find the best and most skilled surgeon or radiation treatment center with the best reputation and experience with whichever treatment you select. The decision is yours but the degree of success depends on the skills, technique and experience of the specialist and/or institution you choose.
Best of Luck, Bob

Last edited by shs50; 05-08-2009 at 11:10 AM.

 
Old 05-08-2009, 08:23 PM   #3
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Re: Newly diagnosed, looking at options

Quote:
Originally Posted by watsonjim2003 View Post
...
My PSA was 13, on retest it was 16. I went in for a biopsy, 12 samples taken. Of the 12 samples, 6 on the right side had Gleason scores of 7, one on the left had a Gleason score of 8, the other samples showed no cancer. Upon direct rectal exam, the surgeon said that there was a hardening on the right side of the prostate, but he didn't think it was enlarged. I am getting a CT scan tomorrow.
...
First, am I right in thinking of this as a chronic disease? Most of the morbidity statistics indicate that someone with the results I have (PSA and Gleason scores)will probably be able to live disease free for quite a long time. Second, what are the experiences of people out there who have had the radiation and hormonal therapy? I have a reasonable appreciation of the issues with surgery, but the issues with the radiation and hormonal therapy are still murky for me. How unpleasant is the hormonal therapy? When I mentioned the therapy to my wife, she laughed and said that now I get to find out about hot flashes. (She is very supportive, but I have to say we both have a weird sense of humor. )
... perhaps one of you could point me to some published literature that discusses the pros and cons of the different options? When the radiation oncologist says radiation is the best approach, and the surgeon says surgery, it would be nice to have a neutral party that can address the issue. As my wife also said, when you ask a Chevy dealer about cars, he isn't going to recommend a Ford.

Thanks

Jim
Hi Jim,

I'll join Bob in welcoming you to the board.

Kudos to your wife. She's right on about the Chevy and Ford dealers in prostate cancer. (That strong bias has been proven by research, by the way.)

I'll join Bob's chorus. He covered a lot of key ground, and I too think you have a real shot at a cure. However, if such an attempt is unsuccessful, then you have a great shot at turning this into a chronic vice lethal disease, especially with all the great advances that are being made every year. ("Chronic" is my goal. I've posted about my story - starting PSA 113.6, all cores positive, most 100% cancer, DRE - "rock hard," perineural invasion, but scans negative.)

I'm one of the strong advocates for active surveillance, but only for truly low risk cases, and that is not even close to your situation. On the bright side, you can strike that option of the list of things you need to learn and think about. From the way you wrote about your situation, I suspect this is not news.

About radiation, there are books by two expert groups that I've read and feel are really helpful. If you can only read one, make it "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment that can Save Your Life and Lifestyle," by Dr. Michael J. Dattoli, MD, Jennifer Cash, ARNP, MS, OCN, and Don Kaltenbach, a well known prostate cancer survivor. Dr. Dattoli is one of the world's experts in radiation for prostate cancer, and his book is an easy and highly informative read. He also does a good job comparing radiation to surgery and other approaches, including varieties of radiation, giving pros and cons. He has also presented outstanding talks at several of the National (and International) Conferences on Prostate Cancer held in the US on in the LA and Washington, DC areas in the past decade, and those talks are available on DVDs. He practices at the Dattoli Cancer Institute in Sarasota, Florida.

Dr. Dattoli actually co-wrote at least one text for doctors on doing radiation with another expert group, from the opposite corner of the US, in Seattle. Three of the Seattle experts edited a book on prostate cancer that included contributions from others as well, and that book has a couple of excellent chapters on radiation: "The Prostate Cancer Treatment Book," edited by Drs. Peter D. Grimm, DO, John C. Blasko, MD, and John E. Sylvester, MD, with a forward by Dr. Daved Crawford, who is expert in hormonal blockade among other things.

There are two books on hormonal therapy for prostate cancer that are head and shoulders above other resources, including treatment of hormonal therapy in the preceding two books. These books are: "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, and "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles Myers, MD. With your situation, I would want to have these two resources in my library no matter what approach I chose.

All these books are science based. You can directly access most of that science by going to www.pubmed.gov, a board we can use here because it is Government sponsored, and searching for topics like (without the quotes): " prostate cancer AND radiation ", and " prostate cancer AND hormonal therapy ". PubMed covers formally published science. However, a lot of science is even fresher - not yet published, or published just as "posters" at medical conferences, or even just residing in the clinical experience of leading doctors. A good example that mixes both is Dr. Myers' Prostate Forum newsletter, which I treasure more than gold.

I've been on intermittent hormonal blockade therapy for more than nine years and am doing well in my third round of full therapy (Lupron, Casodex, and finasteride, and yes I experience hot flashes, but fairly mild this round, one while writing this reply). To me the therapy has been quite tolerable, and I think that is generally the experience. However, some guys get an almost free ride, while others really suffer. (Keep in mind that one solution if you draw a short straw is to stop that therapy and try something else instead.) Also, the great majority of us on intermittent therapy recover our quality of life, including romantic life, while "off therapy," and incontinence is virtually unheard of. There are a number of fairly frequently occuring side effects to deal with, but it is critical to appreciate that their are fairly effective countermeasures for each one, something that is not understood by many doctors who are not truly expert in hormonal therapy. I wrote about this on 5/1/2009 in the fifth post "Re: Disturbing lack of bisphosphonate therapy for bone density, mets". Take a look at that and then post about follow-up questions.

You might want to consider more staging tests and scans to smoke out the details of your cancer opponent.

It's getting late, so I'll leave you with that for tonight.

Take care and keep your spirits up,

Jim

 
Old 05-28-2009, 04:18 PM   #4
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Re: Newly diagnosed, looking at options

Gentlemen:
Thanks for your responses to my earlier questions. The answers you gave were very helpful.
I am, however, still trying to make a decision as to which route to take with regards to treatment.
Jim-Thanks for pointing me toward the books. I have gone through the Dattoli book and he is very bullish on radiation. It gave me a lot to think about. The other books I havenít gone through yet, though I have them.
Bob-Thank you for your response as well. It was good to hear that it is possible to have a radical prostatectomy and not experience the adverse events that are always mentioned.
However, I am still in much the same place that I was before-undecided about whether to go the surgery or the radiation route. It is clear to me that active surveillance is not going to work for me.
So far, I have spoken to two surgeons, and one radiation oncologist. As you might expect, the surgeons say cut, the radiation oncologist says radiation. So far, the radiation oncologist is the only one who backed his assertion up with literature.
I am also in a difficult situation in that due to my job I am living in Connecticut, while my wife and family are back in Michigan. I donít have anyone here in Connecticut to help me out while I am recovering, so I am going to have to go back to Michigan if I want to go the surgery route.
With all these choices, one of my concerns is that I not make a decision simply on the basis of convenience. If I get the surgery, I will need to take time off, go back to Michigan, have the surgery, and then more time off for recovery. With the radiation, I can remain in Connecticut, and keep working.
However, I donít want to make the choice on this basis. I want to take the choice that affords the best possibility of a cure, with the best possibility of further treatment if there is a recurrence, regardless of the convenience. I am, however, only human, and the convenience is a big draw.
I know that I need to make my own decision, and while you guys can provide some guidance, this is one that I have to make myself, along with my wife. I just kind of needed to throw this out to a group that knows what I am going through.
Thanks for listening(reading).

Jim

 
Old 05-28-2009, 06:59 PM   #5
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Re: Newly diagnosed, looking at options

Quote:
Originally Posted by watsonjim2003 View Post
Gentlemen:
...I am, however, still trying to make a decision as to which route to take with regards to treatment.
...I am also in a difficult situation in that due to my job I am living in Connecticut, while my wife and family are back in Michigan. I donít have anyone here in Connecticut to help me out while I am recovering, so I am going to have to go back to Michigan if I want to go the surgery route.
With all these choices, one of my concerns is that I not make a decision simply on the basis of convenience. If I get the surgery, I will need to take time off, go back to Michigan, have the surgery, and then more time off for recovery. With the radiation, I can remain in Connecticut, and keep working.
However, I donít want to make the choice on this basis. I want to take the choice that affords the best possibility of a cure, with the best possibility of further treatment if there is a recurrence, regardless of the convenience. I am, however, only human, and the convenience is a big draw.
I know that I need to make my own decision, and while you guys can provide some guidance, this is one that I have to make myself, along with my wife. I just kind of needed to throw this out to a group that knows what I am going through.
Thanks for listening(reading).

Jim
Hi Jim,

About Michigan and surgery, do you know about the Vattikuti Institute (also known as the Vattikuti Urology Institute), part of the Henry Ford Medical Group? The institute is in Detroit, and I know that world-renowned robotic prostatectomy expert Mani Menon practices there. I learned about that at a conference of the American Urological Association Foundation. The current president of the AUA, a renowned kidney surgeon from the Seattle area spoke to us about his own surgery for prostate cancer, which was handled by Dr. Mennon. He has quite a reputation, and the fact that the head of the AUA had him do his surgery is certainly a good recommendation. He is very well published. If you go to www.pubmed.gov and limit your search to " menon m [au] AND prostate cancer ", you will get 76 hits as of today, many with statistics on results. I noticed that PubMed provided at least one link to a free, complete paper. Dr. Menon has also done other oncology research regarding prostate cancer and appears to have a broad and deep understanding of the disease.

Regarding radiation and convenience for your work, yes - definitely an advantage to radiation in that regard. Here are some thoughts from a guy who considered radiation but ultimately relied just on hormonal blockade for a challenging case. I hope you get comments from our radiation veterans.

Some thoughts on radiation - Of course brachytherapy without any supportive therapy (like IMRT or hormonal blockade) is the quickest, though some experts are concerned that brachy can leave cold spots between seeds that are inadvertently spaced too far apart. My impression is that this would be unlikely in the hands of an expert, such as Dr. Dattoli (as an example, many other doctors are also quite able). However, Dr. Dattoli prefers to give a course of IMRT first and then do seeds. The Radiation Clinics of Georgia (Atlanta) do it the other way around. Advanced IMRT with Image Guided Radiation Therapy takes about eight weeks, but usually the side effects are mild. The newcomer, CyberKnife with Stereotactic Body Radiotherapy dosing, takes only about nine or ten days, if a day is allowed between sessions, as seems wise. However, the jury is still out on long term side effects (especially late developing rectal injury), though the numbers are looking good at least through the three year point. From what I'm reading, it looks like evidence is accumulating that radiation results are better for substantially more patients when boosted by at least six months of hormonal therapy, with a longer boost of up to two years probably even better.

Another thought about external beam radiation - you have a better shot at knocking out cancer that has spread beyond the range of surgery or seeds but is still in the general area of the prostate. Research indicates that often metastases are not that far from the prostate, versus widely spread to distant locations, early in the game. Radiation can eliminate such cancer. With your statistics, there is a greater likelihood of spread beyond the prostate.

Have you thought of getting the (fairly) new Combidex scan to see if the cancer has gone to lymph nodes? The downside is a trip to the Netherlands as there are no approved sites in the US, but you could collect some tulips and bring them back to Michigan for your wife.

Hope this brainstorming helps.

Take care,

Jim

 
Old 05-28-2009, 08:14 PM   #6
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Re: Newly diagnosed, looking at options

Quote:
Originally Posted by watsonjim2003 View Post
....However, I am still in much the same place that I was before-undecided about whether to go the surgery or the radiation route. It is clear to me that active surveillance is not going to work for me.
So far, I have spoken to two surgeons, and one radiation oncologist. As you might expect, the surgeons say cut, the radiation oncologist says radiation.....
You've gotten some excellent advice so far on this board. I was 64 with a Gleason 7- and was initially pointed towards surgery-- even booked the procedure. Then I began an intensive review of alternatives. What I eventually decided was to undergo proton beam radiation in Jacksonville, Florida, due to its highly-targeted and effective results coupled with a generally low pattern of side effects. This doesn't fit in with your staying local and getting something done quickly though-- when I did this about 1 1/2 years ago, I had 39 weekday treatments of 2 Grey each. (Now there is an alternative for fewer treatments at a higher dose/treatment, I believe.)

As I recommend to many who are undecided- I certainly wouldn't want to tell someone what to do- I do suggest that you at least familiarize yourself with this technology, which has been around for a couple decades, although much more activity recently with more centers being built (the newest to be completed at Univ of Pennsylvania later this year at a cost of over $150 million). The book that got me started on proton beam treatment was by Robert Marckini, entitled You Can Beat Prostate Cancer. I believe a copy is included with the info packet supplied by Univ of Florida Proton Therapy Institute, but it's also available through on-line booksellers (and if you go to the major internet retailer, you'll see dozens of reviews of this book and the treatment-- supposedly it's one of the top selling books on the subject of prostate cancer, on that website).

Getting a consultation in Jacksonville can sometimes be a difficult thing to schedule quickly, but if you found you might have some interest, they can generally accommodate people with more immediate need (those with Gleason scores of 7/8 vs 6, for example).

Good luck-- lots to sort out I know. Been there -but today it seems like something that happened a long time ago....

 
Old 06-01-2009, 12:42 PM   #7
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Re: Newly diagnosed, looking at options

Folks:

Thanks again for all your input. Other than the books that have already been recommended, could you point me towards some more information with regard to surgery vs radiation?

Also, I realize that I shouldn't dawdle in making my decision, but I would like to take everything into account that I can before I decide. Given that I was diagnosed back in April, (PSA 16, 7 positive samples in biopsy with Gleason 7, one with Gleason 8. Other samples negative.)how much time do I have to make a decision?

Jim

 
Old 06-01-2009, 02:01 PM   #8
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Re: Newly diagnosed, looking at options

Quote:
Originally Posted by watsonjim2003 View Post

Also, I realize that I shouldn't dawdle in making my decision, but I would like to take everything into account that I can before I decide. Given that I was diagnosed back in April, (PSA 16, 7 positive samples in biopsy with Gleason 7, one with Gleason 8....how much time do I have to make a decision?
It's not just the number of cores that have the cancer that's of concern, it's the Gleason score, and if you scored a 6, I'd say you didn't have to rush to a decision. But with a 7/8, you're on the intermediate level of aggressiveness and probably should be ready to get treated by around August/Sept. That's only my non-medical opinion. I was diagnosed in May of 2007 (with a Gleason 7 and PSA of 4) and was told I didn't have to do anything immediately, but should by the end of that year. My proton beam treatments started that September.

Other that reading about what's out there (books, internet), obviously speaking directly with present/past patients can give you a lot of information. That's why I felt so comfortable with my choice by the time I made it, as I was able to get views from about 20 who had or were having, proton treatments. If you can find a medical center that would give a fair and impartial review of your case/alternatives, that would be good too-- but I'm not sure that really exists. Dr. Israel Barkin runs a non-profit prostate cancer research institute and has considerable knowledge of all the latest technology-- he hosts a weekly internet-based talk show and also does private consultations by telephone (if you're not near California). You can search for him on the internet- that might be useful.

Did you read the Marckini book by chance?

 
Old 06-01-2009, 09:30 PM   #9
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Re: Newly diagnosed, looking at options

Jim,

I recommend using the online UroPredict (search online for this interactive tool, or search/use the similar Partin Tables) to help predict your case's probabilities for curative treatment versus the chronic issue you mentioned in your first post. As the probability (as predicted using these tools) for organ confined disease decreases and the probability of extraprostatic extension, seminal vesticle involvement and lymph note involvement increases, then surgery become a decreasingly viable option.

Unfortunately, the reality is that unless some of your tests definitively show spread, then the doctorís ďclinicalĒ estimations cannot say with complete certainty whether the PC has metastasized or notÖyou will be forced to make a decision based on working with the probabilities from UroPredict, Partin Tables, etc., and the other results at your disposal.

I thought that Jim (IADT3since2000) has given very good guidance in his posting below, which rather than re-state with other words, I will simply copy/paste and colorize here for added emphasis:

ďAnother thought about external beam radiation - you have a better shot at knocking out cancer that has spread beyond the range of surgery or seeds but is still in the general area of the prostate. Research indicates that often metastases are not that far from the prostate, versus widely spread to distant locations, early in the game. Radiation can eliminate such cancer.Ē

I personally had a low-risk case and went the surgery route, so I donít have personal experience or much more to offer on the radiation approach. I would comment, however, that if I had not found an outstanding surgeon that I was very comfortable with in my area, my next step would have been to go to the Vattikuti Urology Institute, also mentioned by Jim (IADT3since2000) in Detroit.

best wishes...

 
Old 06-02-2009, 02:43 PM   #10
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Re: Newly diagnosed, looking at options

You have received some great advice from men who have been through this and have had different treatments for this disease. I too was confused about all the options to treat this disease but I would recommend you do lots of research to see what feels best for you. You have time to do this. You do not need to make a quick and rash decision. One of best resources I found was to talk with me who have had various types of treatments and ask them directly the most personal questions of their outcome, ED issues, urinary issues, etc. There are a number of resources to do this including various message and blog boards, books that will lead you to these sources like Bob Markini's book, Peter Sardino, etc.. Take advantage of these resources. It will be of immeasurable help to you.

I, like Daff, finally after 6 months of research chose Proton Radiation at UFPTI. I have only minor urgency issues which should improve, NO ED issues, and feel great. Results based on various clinical studies show Proton has comparable outcomes to surgery and less side effects. You can find these clinical studies on some of these websites and there is a link on this side to some of those results. Just go back a few months until you find those studies.

Good luck on your decisioin. It is an individual gut check of what you do but I found talking candidly with men who had various treatments one of my best decisions.

Mel

 
Old 06-02-2009, 05:51 PM   #11
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Re: Newly diagnosed, looking at options

i would ask if you have the radiation and if it dont work can they do a radical prostectoimy then i donnt think you can but you can reverse it

 
Old 06-10-2009, 07:50 AM   #12
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Re: Newly diagnosed, looking at options

Hi Jim, I had a PSA level that was lower than yours, a 7 or 8 I think, and was told I was in the low, intermediate range. When my doctor called with the news that I had Prostate cancer there was a long pause and I asked how long I had to live. His reply was "no, no, no", this is a slow moving cancer and I have a %90 cure rate if caught early enough.

I ended up going to the Seattle Prostate Institute in downtown Seattle. They happened to be a one of the first in the country to successfully treat PC patients. You might want to call their office for a reference to a good doctor in your area.
The choice of treatments depending on your situation is many. Your age, health and stage of the cancer are probably the biggest determining factors for treatment that the doctor needs to consider.
After 2 months of investigation I chose to go with the seed implants, only because that was one of the least invasive and most successful treatments for my situation.
Of course having said that there are the side effects that I had, starting a couple of weeks after the procedure I had the urge to pee a lot and often, when I say urge that doesnít necessarily mean I had to take a leak, just that the feeling and urgent need was there. One of the things that helped me through that stage was three doses of Flowmax a day. Six months after my treatment I had problems with a burning feeling when I took a leak, it was uncomfortable and they do have pills that help you to get through that, but in my case it wasnít so bad that I needed to take the pills.
So far itís been 1 year, 4 months since my procedure, my PSA count is down to 1.3 so I guess I could say its been a success so far.

Good Luck,
Dave

 
Old 06-10-2009, 09:36 AM   #13
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Re: Newly diagnosed, looking at options

Quote:
Originally Posted by vulcan View Post
...
I ended up going to the Seattle Prostate Institute in downtown Seattle. They happened to be a one of the first in the country to successfully treat PC patients....
Hi Dave,

Welcome to the board!

I'm one of the other Jims on the board, but I'm very glad to see a post from someone treated at the Seattle Prostate Institute. Since I've been participating starting a couple of years ago, we've had people post who have been treated at other major brachytherapy and combo with external beam treatment and research centers, including the Dattoli Cancer Center & Brachytherapy Research Institute in Sarasota, Florida and the Radiation Clinics of Georgia center in Atlanta, but I don't recall anyone else treated at the Seattle Prostate Institute. I notice that Dr. John Blasko, MD, from the Institute is slated to speak on "Radioactive Seed Implant" at the 2009 Prostate Cancer Conference in mid-September in Los Angeles. I recall learning that he wrote one of the major texts on brachytherapy for prostate cancer with Dr. Dattoli.

Is the Seattle group still doing much high dose rate temporary seed implant therapy? Did they talk to you about that option? Did you consider it? I'm curious because I recall that they were one of the centers pioneering that approach, and I'm not hearing much about it these days.

I hope you will keep us updated on your story and continue to post on the board.

Good luck and take care,

Jim

 
Old 06-10-2009, 03:08 PM   #14
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Re: Newly diagnosed, looking at options

This may be a late addition to my original post but I've been absent from these boards for several weeks due to my wife's having had a bad fall Memorial Day weekend when at our country home many miles and hours from primary home and in a rural area. She fractured her ankle in so many places as well as dislocating it that the surgeon said reconstructing and stabilizing it was like piecing together a jigsaw puzzle. She also sprained and tore a ligament on the other ankle, limiting the amount of aggressive physical therapy she can sustain and lengthening the wheelchair time and in-patient care she'll need. May take several months before she can walk and then no guarantees on range of motion or permanent limp.
What I wanted to add if you haven't yet made your decision between surgery and radiation are the following two thoughts which you probably have heard:
1. If surgery fails to cure and there is a recurrance, the option of primary radiation is still available with a second shot at a cure. If primary radiation fails and there is PSA recurrance, salvage surgery is still possible but as a management strategy rather than curative.
2.If surgery is successful, you're done after 2-3 days in hospital and a few weeks for recovery with the inconvenience of a catheter for about a week following surgery. Radiation takes about 8 weeks, usually after hormonal preparation to shrink the prostate so as to reduce the area receiving high intensity radiation. Its time consuming and also has the side effect risks of proctitis (rectal bleeding and bowel problems)and urethritis (bladder damage with painful & frequent urination) from peripheral radiation in addition to the possible side effects from surgery. The radiation techniques are much more advanced today than even a few years ago which reduces the extent of peripheral damage but the most effective radiation is still the most powerful dosing which is why Cyberknife is still a questionable option except for those who can't withstand the rigors of the optimal therapies or simply can't take the time.Proton Beam has pretty much minimized the risks of the usual radiation side effects but is very time consuming, expensive and only available in a few places which doesn't include Michigan as far as I know.
Again, Good Luck, Bob

Last edited by shs50; 06-10-2009 at 03:11 PM.

 
Old 06-11-2009, 11:29 AM   #15
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Join Date: May 2009
Location: Connecticut
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watsonjim2003 HB User
Re: Newly diagnosed, looking at options

Greetings everyone:

There sure are a lot of Jims out there on this board

I have had the advantage of the input from everyone here, and also the input from two radiation oncologists. The first one with whom I spoke in Michigan sent me some references and made suggestions for other things to read. In looking at the Datolli book, and at the references the radiation oncologist gave me, it seems clear that for someone with disease like mine(PSA of 16, Gleason scores of 7-8)the best solution is radiation. In two studies that I looked at the percentage of men who were disease free at 5 years was 80% for the radiation, compared with 60% for the surgery. Also, the long term numbers look better for the radiation. If you make it disease free for 5 years, your likelihood of the disease coming back is around 2%.

In talking to the radiation oncologist here in Connecticut, he agreed with the numbers. I asked him about treatment failure, and he said that because new treatments are coming on line all the time, he couldn't tell me what sort of treatment he would recommend if the radiation failed. It was likely that by the time we knew that, the standard of care would have changed.

We talked about hormone therapy, and he recommended 2 years. He said that there were studies that suggested that as little as 6 months worked, but in their hands the longer treatment was better. I asked about side effects, and he said that in their experience I can count on hot flashes, and fatigue, but gynecomastia is a relatively infrequent issue in their hands. He also mentioned that they have found that Prozac helps with the hot flashes, and I am currently on another SSRI-lexapro-so I may not have that problem.

So, after the information from this board, and the information from the two radiation oncologists, I decided to go with radiation treatment. I am lucky in that the local hospital is staffed from the Yale group, which has a lot of experience-900+ patients treated with radiation, and the doctor who is supervising my case-who is from Yale-has 200 treatments under his belt. The hospital has a Calypso system, so hopefully the collateral damage to local tissue will be slight. The radiation oncologist who is in charge of my case says that they have seen very little in the way of tissue damage-some rectal bleeding, some bladder irritation but both of those go away after the treatment.

I go in for my first hormone treatment on the first of July. The urologist will insert the gold fiducials on the 15th of July. I think that the radiation treatment will begin the beginning of August. Fortunately, though the radiation oncologists are from Yale, the treatment is local so that should make life easier.

I also see a nutritionist tomorrow morning because I am very overweight. The doctor joked that I needed to lose some weight so I don't break his Calypso. He said it cost $300,000, and if I broke it his chief tech would kill him. The nutritionist may help with regard to the possibility of weight gain on the hormone treatment as well.

I will try to keep people posted as to how things are going.

Thanks again for all your help, input, and good wishes.

Jim.

 
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