Diagnosed two weeks ago.

JustJB · Posted: Sat Aug 15, 2009 6:59 pm Post subject: Diagnosed two weeks ago.

Hello;
I'm pleased to have found this forum and look forward to some good feedback on my situation.
I am 51 yrs, 10 mos. My PSA rose from 2.8 to 3.8 to the current 5.3 in about 39 months. I had a 12 point biopsy about a month ago. Prostate volume was 28; no irregularities felt in DRE. One of the biopsies came back positive with a Gleason of 3+3=6. I still don't have all the terminology down but the rating??? was T1C. I just checked the Partin and it shows about a 95% chance of the tumor being organ enclosed. Basically it seems if I have to have PC this is the way to have it.
I am just starting the process of deciding on treatment. I don't have any major underlying conditions so my life expectancy is over 30 years at this point, by standard actuarial tables. Personally I'm shooting for 40+ years; Life is way too interesting to check out early!
My urologist has earned my trust. He is at my local (2 miles) Kaiser and specializes in open surgery. I can elect robotic surgery but would have to go to the Kaiser facility in Walnut Creek, about 70 miles away.
At the moment I am leaning towards the surgery but will consult with specialists in both treatments.
I'd appreciate any feedback based on my specs and thanks in advance!
_________________
Age 52
Gleason 3+3 = 6
Stage T1C
1 out of 12 cores involved
Left side, median lobe

johnT · Senior User Joined: 27 Apr 2009 Posts: 176

JB
Accoring to your stats: G6, nothing felt on DRE, PSA doubling time well over 3 years, one core positive; the Prostate Cancer Research Institute recommendation is NO IMMEDIATE TREATMENT.
Only 3% of G6 tumors are agressive and progress very rapidly, your PSA doubling time indicates you are in the 97%. In 5 and 7 year studies 75% of G6 low core, no DRE felt, 75% showed no progression, either biologically or clinically (change in gleason). The 25% that progressed were treated with a local treatment and no patient had a reoccurrance.
So Active Survelience is a valid option and at worse will delay treatment for a few years A psa doubling time of over 3 years is a very favorable prognosis of Active Survelience.
Any local cure will work 99% of the time in your case. You will also have 100% chance of side affects and about a 30% chance of permenant side affects. Seeds have the least side affects, external radiation next and surgery has the most.
Do your research and get 2nd opinions, you may have indolant cancer clusters which are common in men over 50 (50%) and most will never turn into a tumor. Research all treatment options and come to the one that best fits you and your lifestyle. YANA and the Prostate Cancer Research Institute have a lot of information for the newly diagonosed.
The two best books are Walsh's book and Stephen Strum's Prostate Cancer Basics.
Good luck in your research, you will find that every treatment in your case has the same chance of success which is excellent.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

Early prostate cancer is a controversal subject, but I'd agree that life expectancy is the key. I had a similar situation, except I was 6 years older, and ultimately had 3 spots of Ca in my prostate, confined to the organ, with the same Gleason score, and a PSA rising to 7.7 at the time of the surgery.

The best information on outcome is the Scandinavian study, in which patients were randomized between surgery and watchful waiting with followup of up to 12 years. See my earlier post, "what does it all mean?". This study show that for immediate grade prostate cancer, there is a modest benefit from surgery, in terms of a reduced chance of dying from prostate cancer, but only if you are younger than 65 at the time of diagnosis. For early prostate cancer, like you and me, the death rate from prostate cancer at 10 years after diagnosis is 8% with watchful waiting and 4% with surgery. However, there are a few clues that more men in the watchful waiting group have some evidence of growing prostate cancer, for example, more are on hormone treatment at 10 years.

This study doesn't make a very good case for having surgery if you only expect to live for 10 years. However...there isn't any good data for living 20 or 25 or 30 years, and it is reasonable to think that there would be more and more benefit in the surgical group as time went on. It would sure be good if there was more data, however.

The cost of surgery is mostly the risk of incontinence (in the great majoritity this goes away over a period of months...but certainly not in all), and erectile dysfunction. The great majority have ED to some degree after surgery, but there is improvement in many over 18 months. If you are younger, and if both nerves are spared, there is a better chance of recovery, and this describes the most common patient getting surgery for early prostate cancer. ED seems to be the most common long term complication of surgery.

This was certainly a tough decision for me, but I've been lucky so far with the results of the surgery.
_________________
John

notme · Guest

I'm guessing that you haven't heard about HIFU, as doctors won't tell us about it because it isn't approved in the USA yet, it's in clinical trials, but it has been in use in Europe for 18 years with a 94% success rate, 1 in 172 incontinence rate and 20-30% ED (but Cialis works for ED, and most times the ED is temporary).

I had it done, and I feel so lucky that someone told me, and I could afford it, the clinical trials are free but I went to Mexico to have it done ($25,000), my doctor is the doc who has trained all the clinical trial doctor how to do it, he's treated 700 patients.....no side effects, no problems, just a 2 hour procedure. Call the main clinical trial number to find a trial near you 888-874-4384

I also know someone who had it done 8 years ago and is still cancer free, HIFU is real. I've sent in several friends who all report back that they had a picture perfect treatment.

Here's a write up on it, there are lots of sites I could give you links to, like wikipedia.

High Intensity Focused Ultrasound (HIFU)
HIFU for prostate cancer utilizes high intensity focused ultrasound (HIFU) to ablate/destroy the tissue of the prostate. During the HIFU procedure, sound waves are used to heat the prostate tissue thus destroying the cancerous cells. Essentially, ultrasonic waves are precisely focused on specific areas of the prostate to eliminate the prostate cancer with minimal risks of effecting other tissue or organs. Temperatures at the focal point of the sound waves can exceed 100oC In lay terms, the HIFU technology is similar to using a magnifying glass to burn a piece of paper by focusing sunlight at a small precise point on the sheet. The ability to focus the ultrasonic waves leads to a relatively low occurrence of both incontinence and impotence. (0.6% and 0-20%, respectively According to international studies, when compared to other procedures, HIFU has a high success rate with a reduced risk of side effects. Studies using the Sonablate 500 HIFU machine have shown that 94% of patients with a pretreatment PSA (Prostate Specific Antigen) of less than 10g/ml were cancer-free after three years However, many studies of HIFU were performed by manufacturers of HIFU devices, or members of manufacturers' advisory panels.

HIFU was first used in the 1940’s and 1950’s in efforts to destroy tumors in the central nervous system. Since then, HIFU has been shown to be effective at destroying malignant tissue in the brain, prostate, spleen, liver, kidney, breast, and bone Today, the HIFU procedure for prostate cancer is perfomed using a transrectal probe. This procedure has been performed for over ten years and is currently approved for use in Japan, Europe, Canada, and parts of Central and South America.

Although not yet approved for use in the Unites States, many patients have received the HIFU procedure at facilities in Canada, and Central and South America. Currently, therapy is available using the Sonablate 500 or the Ablatherm. The Sonablate 500 is designed by Focus Surgery of Indianapolis, Indiana and is used in international HIFU centers around the world.

http://www.medicalunderstanding.com/treatment-prostate-cancer-4594.html

Here's a description of HIFU from the Prostate Cancer Research Institute, an independent research charity : http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

By the way...HIFU isn't like radiation, if they don't get it all they can redo HIFU or you can still have surgery or radiation. Why risk quality of life?

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

so, here we have the opinions of this list:
1. Don't treat, watch
2. You can do surgery if you want, but the possible benefit is years in the future, and not defined by data, because there are no controlled studies going 20 or 25 years into the future.
3. Try a new method, with limited data, which might have fewer side effects than surgey, but you'll have to go to another country and pay for it out of pocket.

The list needs some more members, but the sad thing is, you can go to 3 different MDs and get these same 3 opinions, as well as 4 or 5 others. Mostly, you're on your own to sort this out.

The problem is, that there is a proliferation of different treatments (some developed because of our for profit, fee for service health care system in the US), but inadequate studies to sort this out. It's always hard to organize good, randomized controlled clinical trials that give the real answers to questions like...what treatment is better? do the treatments even make a difference? ...but it's particularly hard with a disease that unfolds over decades. On these blogs you read about people who had recurrence of PC many years later. There was one post about someone who had recurrent PC 26 years after a prostatectomy for low grade cancer [I think it was a gleason 6]. One thing...ignore any comments that talk about a "cure rate" for a treatment. You only can count yourself as "cured" after you die from something else.
_________________
John

JustJB · Posted: Sun Aug 16, 2009 10:55 pm Post subject: Thanks for all the info

Thank you for your responses. Regarding HIFU, I checked it out and there are two problems. The only test center is 109 miles away, and more importantly, is only doing Cryo, not HIFU, in the big comparison study going on now. Going out of the country is out of the question, not to even mention the cost. So I continue my research and welcome any and all input.
_________________
Age 52
Gleason 3+3 = 6
Stage T1C
1 out of 12 cores involved
Left side, median lobe

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

These are analyses of patients in the Scandinavian randomized study of surgery vs. watchful waiting. The first article shows that PSA at diagnosis and the rate of PSA increase did not reliably predict development of lethal prostate cancer. The second article contains a disturbing graph. Of the subgroup of patients which had Gleason scores <7, 10 years after diagnosis, about 50% were on hormone treatment. That makes it difficult to think of early prostate cancer as being a predictably indolent process. Even at 10 years, there is evidence that it is progressing, even though the chance of dying from early prostate cancer 10 years after diagnosis is only 8% with watchful waiting. The second article, in particular, greatly influenced my personal treatment decision.

The strength of these articles is that they are based on a randomized control study (that is, comparing treatment to no treatment), and the followup goes out to 12 years now. The problem with most of the research on prostate cancer, is lack of a control group, and since many people with early and intermediate prostate cancer do well for many years even with no treatment, you need to compare the results of treatment to a control group to know if a treatment is really making a difference. Also, because PC is so slow, you need many years of followup.

These articles, and others, can be identified on pub med:
http://www.ncbi.nlm.nih.gov/pubmed/ The full text of the articles can be obtained through a medical library. A few journals have free full text versions of the articles, but many journals only give the abstract and require purchase for the full text article.

Article 1:
Prostate-Specific Antigen Levels as a Predictor of Lethal Prostate Cancer
Katja Fall , Hans Garmo , Ove Andrén , Anna Bill - Axelson , Jan Adolfsson , Hans-Olov Adami , Jan-Erik Johansson , Lars Holmberg
For the Scandinavian Prostate Cancer Group Study No. 4
Background Rates of long-term survival among patients with untreated localized prostate cancer are high. To avoid unnecessary treatment, tools are needed to identify the small proportion of patients who are destined to develop lethal prostate cancer. Methods To evaluate the accuracy of early changes in prostate-specific antigen (PSA) levels as predictors of prostate cancer outcome, we assessed serial measurements of PSA level among 267 men with localized prostate cancer in a Scandinavian cohort of men who were diagnosed between 1989 and 1999 and who were managed by watchful waiting. We then 1) fitted individual regression lines to the PSA values assessed for each patient during the first 2 years of follow-up by using three different models, 2) evaluated early PSA curve characteristics as determinants of the cumulative incidence of lethal prostate cancer and calculated hazard ratios for baseline PSA value and rate of change in PSA level to prostate cancer outcome, and 3) plotted time-dependent receiver operating characteristic (ROC) curves. All P values are two-sided.
Results During complete follow-up for a mean of 8.5 years, 34 patients (13%) died from prostate cancer, and 18 (7%) developed metastases but were still alive at end of follow-up. In a log-linear model, both PSA value baseline ( P = .05) and the rate of PSA change ( P <.001) were associated with the development of lethal prostate cancer. In the ROC analysis, however, the accuracy of classifying the disease as either indolent or destined to progress was low, regardless of the cut point chosen for initial PSA level or rate of change in PSA level.
Conclusions Although baseline PSA value and rate of PSA change are prognostic factors for lethal prostate cancer, they are poor predictors of lethal prostate cancer among patients with localized prostate cancer who are managed by watchful waiting.
J Natl Cancer Inst 2007;99: 526 – 32

Article 2:
Hematol Oncol Clin N Am 20 (2006) 845–855
Prognostic Markers Under Watchful Waiting and Radical Prostatectomy
Lars Holmberg, MD, PhDa,b,*, Anna Bill-Axelson, MD, PhDb,
Hans Garmo, PhDa, Juni Palmgren, PhDc, Bo Johan Norle´n, MD, PhDb, Hans Olov Adami, MD, PhDc,d, Jan Erik Johansson, MD, PhDe, SPCG-4 Study Group

In accordance with most other studies, we found a clear association between Gleason score and PSA level at diagnosis on one hand and prognosis on the other. Tumor stage and age at randomization were not as strongly related to risk of prostate cancer death. The data presented here—and an interaction analysis in our main presentation of the study [1]—show that there is no clear evidence that Gleason score, PSA level at diagnosis, or tumor stage modifies the beneficial effect of radical prostatectomy; in all these subgroups there is a benefit from surgery. However, in the analysis by age group, there was a similar cumulative incidence curve in both age groups following randomization to prostatectomy and for the older men also following allocation to watchful waiting.
In contrast, the prognosis in the youngest age group in the watchful waiting group was considerably worse resulting in the impression of an effect modification on radical prostatectomy by age [1]. After 10 years of followup, the probability to be on hormonal treatment among the men in the watchful waiting group is close to 50%.
_________________
John

cantexplain · Posted: Mon Aug 17, 2009 12:20 pm Post subject: Re: Diagnosed two weeks ago.

Just JB: other than our ages (I'm 56) our situations are identical, with the news just coming to me two weeks ago (same core results, Gleason score of 3+3 =6. etc) and I have the same damn issue trying to figure out what to do. I have visited a surgeon (a specialist in robotic surgery) and will meet with a radiation oncologist later this week. Have you met yet with the radiation specialists? If so, what did you think? I'm not the sort to entertain the "watchful waiting" treatment, but it might be what I do for the next 6 months, then get another PSA test and see if it is elevating.
CB in San Diego

JustJB · Posted: Mon Aug 17, 2009 12:57 pm Post subject: Re: Diagnosed two weeks ago.

[quote="cantexplain"]Just JB: other than our ages (I'm 56) our situations are identical, with the news just coming to me two weeks ago (same core results, Gleason score of 3+3 =6. etc) and I have the same damn issue trying to figure out what to do. I have visited a surgeon (a specialist in robotic surgery) and will meet with a radiation oncologist later this week. Have you met yet with the radiation specialists? If so, what did you think? I'm not the sort to entertain the "watchful waiting" treatment, but it might be what I do for the next 6 months, then get another PSA test and see if it is elevating.
CB in San Diego[/quote]
My Urologist said 6 months wouldn't make much difference but neither he nor I figure it will go that far. I'm meeting the radiation specialist on Aug. 24, and am waiting for the appt. with the robotic specialist. I'm leaning towards surgery but want to hear more. My Urologist does the open surgery about 2 miles from my home, so that is a consideration as well. I'm not considering the watchful waiting treatment, but I will take the time to meet and speak with the specialists available to me.
_________________
Age 52
Gleason 3+3 = 6
Stage T1C
1 out of 12 cores involved
Left side, median lobe

notme · Guest

JB,
there are some hospitals doing the HIFU trials that aren't listed in the general data base.....like Madison, Wisconsin. Where do you live?

cantexplain,
there are HIFU trials in California, Fresno that I know for sure of, and a doctor from Santa Rosa who goes to Cabo to treat men. yes, $25,000.

It's just that HIFU was a couple hour procedure, no pain, almost non existant quality of life issues, it makes me mad that it isn't offered here.....

JustJB · Posted: Mon Aug 17, 2009 4:11 pm Post subject: Re: Diagnosed two weeks ago.

[quote="notme"]JB,
there are some hospitals doing the HIFU trials that aren't listed in the general data base.....like Madison, Wisconsin. Where do you live?

cantexplain,
there are HIFU trials in California, Fresno that I know for sure of, and a doctor from Santa Rosa who goes to Cabo to treat men. yes, $25,000.

It's just that HIFU was a couple hour procedure, no pain, almost non existant quality of life issues, it makes me mad that it isn't offered here.....[/quote]
San Jose, CA. When I checked the trial that is comparing Cryo and HIFU, it said the location was Fresno but only offered Cryo. I've applied to it to see what they have to say. The HIFU sounds very interesting but I'm not in a position to put up $25K or anything close. I'd love to find an available trial within a reasonable distance.
_________________
Age 52
Gleason 3+3 = 6
Stage T1C
1 out of 12 cores involved
Left side, median lobe

cantexplain · Posted: Mon Aug 17, 2009 7:00 pm Post subject: Re: Diagnosed two weeks ago.

Hey, guys: thanks for the quick responses and input. As I mentioned, I'm trying to pull all the information I can together and not make any judgments on treatment until then (and, the appointment with the radiation group is still to come)> At least this type of cancer, at the stage I'm in, gives me time to consider all the options.

It's interesting, though, that I'm too YOUNG for the "watchful waiting" treatment (56 years old). At least too young for that to be a long-term treatment strategy. I'm wondering though, how long the HIFU clinical trials and approval process might take? And, whether the results are as good as represented in what I've read elsewhere.

CB

notme · Guest

Well, "they" say HIFU will be approved in a couple years....but I doubt it....it'll cost the hospitals and doctors way too much, just think ~ no hospital stay, 2-3 hour procedure, HIFU doctors charge $25,000. to take their team out of the country, stay in hotels, flights....the loss to the medical establishment will be overwhelming. The machine costs 3.5 mil.

HIFU was invented in 1941!!! It's been swept under the carpet for 68 years.....if I'm wrong no one will be happier than I.

It's been enlighting to research HIFU....and I read all the forums, a couple won't allow anyone to post anything about HIFU unless it's bad, so there's very little there, my posts get erased. Most guys who have had HIFU give up on the forums.

International HIFU has financing.

I know 3 guys from my home town who have gone for HIFU....they all feel like they skated away from cancer, as I do. As far as long term, I really didn't care--if it reappears then I'll get reHIFUed. At least I know I'm not losing quality of life in the meantime, and as you can read here--neither radiation nor surgery can offer fail safe results. I do know a guy who knows 6 others who were all HIFUed 6-8 years ago and are still A-OKay.

Here's an email I just got:
"Things have been going really well for the patient. The "hose" is out
and I've been out hiking and even running when possible. I feel
really good. Just occasional small remnants of blood in the urine.
Truly amazing! I'm speaking to an individual on Wednesday morning
that has been watching his gleason 6 for two years and sounds a bit
confounded/ scared. He had done tons of research but never had heard
of HIFU (!). So I'm passing your great help on to the next person...

Cheers, Bob"

You both live in California Hey, why don't you both jump on a plane and go to Japan? There's a doctor there who offers HIFU for $15,000. he includes 2 nights in the hospital (only because of language batrrier). He did a clinical trial that boasted 100% happiness. Japan has been doing it 6 years. Read abou them here: http://www.hifu-jp.org/technology.html
Rats, I wish it was cheaper.

My only problem with the HIFU trials is the experience of the doctor, as they have very little, but to date I haven't heard of any trouble, the doctor in Denver has already posted great results at PubMed.

BTW ~~~
Call Dr. Lazar in Santa Rosa, CA. he's a great friend of my doctor (S. Scionti) and he can steer you in the best direction. Phone: (707) 546-5553 info@californiahifu.com

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

This topic has already discussed at length on a previous post:

http://www.cancerforums.net/about13528.html
_________________
John

johnT · Senior User Joined: 27 Apr 2009 Posts: 176

John M,
Your above post is very misleading at best. You are mixing apples with oranges. There is a major difference in low grade Gleason 6 PC and other PCs. Low grade G6s act a lot different and are much more predicable.

You can very accurrately predict tumor agressiveness using psa with a G6 tumor. It is the G7, and especially the 8's and 9's that psa is a less useful predictor.

There is only a 25% to 35% chance of anyone meeting the AS creteria having their PC progress and 100% that a local treatment will cure it. (Klotz and Choo)
Even in the Scandavian study you quote, the Gleason 6 subset of 88 patients had zero matastasis in 12 years.

It's real simple. If you meet the AS criteria and your PSA doubling time is over 3 years the chances of your PC ever killing you is about the same as a lightening strike.
When people say that PC in the US is being overtreated they are talking about low grade G6 PC. We have to make this distinction in order to keep the debate rational. You can't take intermediate risk studies and use them to draw conclusion about Active Survelience, and No one suggests AS for G7 or a high PSA G6.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

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