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Requesting Opinion on My Prostate Cancer from Experienced People


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Old 06-19-2017, 12:26 PM   #1
ak773
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Red face Requesting Opinion on My Prostate Cancer from Experienced People

Dear Sir,
I am Mohammad Asaduzzaman from Bangladesh. I am 45 years old.
I am writing about my prostate cancer condition and requesting the opinion from experienced people.

I had to take urological consultation in last year, August 2016. Then my PSA (Prostate Specific Antigen) level was 7.1 ng/ml.

I had been taking antibiotic medicine according to the doctor and after four months checking my PSA again and it was 4.1 ng/ml.

Thereafter I had been leading my normal life. And on February 24, 2017, I checked my PSA level found 6.83 ng/ml and Gleason’s Grade 3+3=6/10 by biopsy test.

Lastly, I took consultation from an Indian doctor and he suggested me to take Hormone Therapy (Zoladex Injection) monthly (3 Month) and Calutide tablets 50mg per day without any surgery. Already I have taken two injections.

On June 17, 2017, again I have checked my PSA found 1.37 ng/ml.

Is it the right way to save me from spreading cancer cell? And What Should I do now? Is it needed to undergo surgery early?

Kind Regards,
Asaduzzaman Lipton

 
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Old 06-19-2017, 02:51 PM   #2
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Dear Mohammad,

It is disconcerting to get a diagnosis of cancer, but you are taking the right step by seeking information. Here are some important points that apply to your description:

1. It is reasonable for you to be optimistic about your long-term prospects, and also reasonable that you have a good chance of avoiding therapy altogether or at least delaying it.

2. It appears you have a combination of infection/inflammation and prostate cancer that is likely the mild type.

3. The therapy suggested to you by the Indian doctor is one I am quite familiar with as a long-term veteran of “androgen deprivation therapy (ADT), also known as hormonal therapy and by some other names. The approach offered to you is reasonable, though I advocate a version that some doctors believe is superior, adding a third drug. In your case, if there is no stealthy cancer that is more aggressive than Gleason 3+3=6, there is a chance that therapy could be curative, and, even if not curative, could likely be used intermittently for many years, by which time better curative approaches are likely to be available.

4. Surgery is an option, but in recent years opinion in medical circles has shifted to avoid over treating cases that are mild, as yours appears to be.
Regarding optimism, patients diagnosed in the United States are now surviving cancer superbly well at the 5 and 10 year points – nearly 100% compared to age-matched mates, and exceptionally well at 15 years: 95% - the best of any major cancer, and many living well beyond 15 years. The unfortunate few who are pulling down the percentages usually have distant metastases when they are diagnosed, and that is almost certainly the extreme opposite of your case.

Regarding the possibility of infection/inflammation along with your cancer, the substantial drop in PSA after antibiotics suggests that some infection/inflammation is a strong possibility.

Regarding ADT as the first therapy used, even for mild cases, which is most unusual in the US but common and well researched in Japan, ADT appears to be able to kill Gleason grade 3 cancer, which is what you appear to have based on the biopsy: two grades of 3 combining for a score of 6. A 10 core biopsy is fairly thorough. I can refer you to some key research if you would like. Do you know how many cores were cancerous, and what the percentages of cancer were for each cancerous core? Do you know your PSA “density”: dividing PSA by the size of the prostate in cc? These additional important facts can help you navigate the therapy options, including one below called “active surveillance”.

I had a highly challenging case, but for the first thirteen years intermittent triple ADT (ADT3) was my only therapy, along with supportive medications and lifestyle tactics (aerobic and strength exercise, diet, nutrition, supplements, and limiting stress). You have two elements of this combination: Zoladex and Calutide. The third element is one of the two following drugs (US names): Avodart/dutasteride or Proscar/finasteride. The latter drugs function to almost completely eliminate conversion of testosterone into far more potent and dangerous dihydrotestosterone (DHT), a shift which we think makes the Calutide more effective as it does not then have to compete with DHT. The goal is to get your PSA down to 0.05 or lower, ideally down to less than 0.01. That is achievable for many of us, even for me with my miserable start (113). My doctors monitored testosterone and DHT as well as PSA. You want testosterone to drop to less than 20 ng/dL, and the DHT to drop to less than 0.05 ng/dL; if they do not, it indicates there may be a flaw in the delivery of medication or unusually rapid clearance of the drugs by the patient. Your PSA is dropping nicely after what seems to be something between one and two months on ADT; if you do not shortly get it to less than 0.05, going on the third drug would probably be wise. (That’s what I had to do to get my PSA to drop below about .6, where it was leveling off.)

However, even ADT in the coming months/years may not be necessary for you. Worldwide research published from 2002 through this year has demonstrated the safety and high effectiveness of a technique known as “active surveillance” (AS) for cases with characteristics like yours. The idea is to monitor the cancer to guard against a stealthy cancer that is more aggressive than virtually all Gleason 3+3=6 cancer, and defer major therapy until – if ever – more aggressive cancer is detected. AS research has proven it is extremely rare for a monitored, suitable case to ever suddenly become so aggressive that it cannot be treated with the aim to cure with surgery or radiation. Almost always, the minority of stealthy aggressive cases that are detected by monitoring can be treated in time to cure, with results virtually identical to results of patients treated shortly after diagnosis. In the meantime – while on active surveillance and deferring therapy – you do not have the side effects of major treatment, and you are gaining time for technology to keep improving, which it is doing at an impressive pace. I suspect there are doctors in Bangladesh that can do active surveillance with you, almost surely in India also. Singapore is such a location of medical excellence that it is highly likely to have such doctors.

Good luck to you!

Last edited by IADT3since2000; 06-19-2017 at 02:53 PM. Reason: Minor change right after posting.

 
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Old 09-08-2017, 02:47 PM   #3
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

You seem well informed, I was just diagnosed with prostate cancer. My gleason score is 7, doc said 3+4?? He suggested hormone therapy and radiation, bone scan was clear. Then I spoke with a surgeon, he said take it out. I'm 71, and don't want to need chemo a few years down the road. This news comes to me from a second opinion. The first urologist was treating me for BPH for a year and a half. Any Thoughts? I'm totally confused

 
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Old 09-10-2017, 03:12 PM   #4
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi patvl246,

Of course you did not want to join this prostate cancer club, but we have good people in it, and of all the major cancers, prostate cancer now has the best survival in the US, and I’m thinking that is likely true throughout the world. It’s normal to be very confused in the beginning. Here are some thoughts about your situation and choices.

First, the Gleason score is really important, and not all pathologists are skilled in interpreting the pathology slides from the biopsy. Often the first reading is done fairly locally, and it can be by a general pathologist who does analysis for various diseases, including many types of cancer, and for men, women and children. Expert second opinions are wise unless the original reading was by an expert. It is not unusual for the Gleason grades that go into the Gleason score to be changed upward, and sometimes downward. It is especially important when the score is 7, as a 3+4=7 is often considered favorable – much like a low-risk case of prostate cancer, where a 4+3=7 is considered unfavorable Gleason 7 and considerably more aggressive. With appropriate supporting case characteristics – like PSA score, PSA trend, PSA density, the stage, and imaging if available (such as from a “multiparametric MRI”), and even sometimes genetic testing – some Gleason score 3+4=7 cases are considered appropriate for active surveillance, which is an excellent choice for patients with appropriate case characteristics. Of course other serious health conditions can also help tip the balance one way or the other toward or away from treatment in the near future. Some doctors are quite helpful in getting expert pathology opinions, but with others you have to be assertive. Of course sometimes cost, or insurance coverage, can make that easy or a hard choice.

The bone scan being clear is of course a lot better than a scan that shows cancer, but there are two types of bone scan normally used. For many years bone scanning was done using a radioactive version of the element technetium. While that scan is widely available, it tends to miss cancer unless at least 10% of the bone at the site of a metastasis is involved, which is unlikely early in the development of a patient’s prostate cancer; in other words, it’s unlikely early cancer will have spread to more than 10% of bone at a specific site. Still, your odds are good since that scan being favorable. A newer scan, known as the F18 PET/CT bone scan is much more reliable, and if your scan is negative with that, it is an excellent and reliable indicator.

Age – How is your overall health and condition? In the US, it used to be an accepted custom that patients older than 69 years of age did not get surgery because the operation put quite a strain on them, especially with radiation at a competent facility providing results that are at least as good and with much less strain on the body. Now there seems to be a little more leeway in the upper age limit, and that is probably true in Columbia too. However, other things being equal, radiation is increasingly a favored choice as we get older beyond age 69 (and also good for younger patients). On the other hand, if you have certain diseases or conditions, such as Crohne’s disease or considerable trouble urinating, radiation loses some of its advantage over surgery.

Radiation supported by hormonal therapy: this is a widely used approach for an intermediate case, which is what you appear to have based on the current information you provided. (There’s the importance of that Gleason score again!) Typically the course of supportive hormonal therapy for an intermediate risk case is fairly short, such as four to six months. (It’s much longer for high-risk cancer. Until recently, two years or more was the customary length, but a good Canadian study has indicated that 18 months is just as good as the longer course. On the other end, a short course of hormonal therapy for high-risk disease typically has inferior results according to research.)

Surgeons versus Radiation Oncologists: Doctors very frequently have a strong bias toward the kind of therapy that they practice. Often they are not that familiar with improvements occurring in other fields of treatment. In other words, the surgeons often are not aware of the many improvements in radiation in recent years and unreasonably look down on it, and radiation doctors may not be aware of some of the advances in surgery.

Chemo in a few years? Whatever treatment you have (or if judged eligible for active surveillance), it is quite unlikely, if you have an intermediate (or low-risk) case, that you will need chemo in a few years, but not out of the question. Most patients who are treated are cured, but a substantial minority have a recurrence. Of those recurrences, a substantial proportion are so mild that they need no major treatment. For others, hormonal therapy often provides all the treatment that is needed. And that is as of 2017: keep in mind that each new year (more like each new month) brings further advances in non-drug treatments, imaging, other testing (such as genetic), drugs, side-effect avoidance and management, availability, affordability, etc. Therefore, if a patient treated now does well for five years but then needs help, the kind of help available then will almost certainly be substantially better than what is available now.

You can help your odds of success by good diet, exercise, stress reduction, and perhaps mild medications. A statin drug, if you tolerate a statin drug well, is often advised, not just for heart health but also for prostate cancer outcomes. Another example is the drug metformin, an old diabetes drug, that seems to be helpful to many of us, especially diabetics who have radiation for prostate cancer. However, there is still some debate about that.

Good luck!

Last edited by IADT3since2000; 09-10-2017 at 03:14 PM. Reason: Spacing.

 
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Old 09-10-2017, 05:04 PM   #5
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Jim, Thanks so much for your reply, you did ease my stress a bit. looking at the graph of my biopsy, doctor took 12 samples, seems like the right side of the gland is the most affected, from those 6 samples it states percentages from 10 to 100%, RB 20%,RLB 10%, RM 10%, RLM 60%, RA 90%, RLA 100%. One core on the LLA is 5%.
Hope that makes some sense. I'm leaning toward surgery, spending too much time stressing. Thank you so much, Good Luck to you. I'm in Columbia, New Jersey

 
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Old 09-11-2017, 06:02 PM   #6
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi again patvl246,

You’re welcome.

Now that I realize you are just a short drive from New York City, where a number of outstanding centers treating prostate cancer are available, with Memorial Sloan Kettering Cancer Center arguably leading that list, and now that I have a better sense of your case, there is some additional information I can provide.

While a weak argument could be made for active surveillance if the highest Gleason found was 3+4=7, with as many biopsy cores positive for cancer as you have, and with a number of them above 50%, I doubt that any leading center would favor active surveillance. Treatment in the near future makes sense to my layman’s eyes.

Again, if you are a healthy 71 year old, you would most likely be able to withstand surgery. Surgery is as good as radiation at curing cancer that is confined to the prostate and its capsule; in fact, around twenty years ago it was clearly better. Imaging, such as a multiparametric MRI, could increase confidence whether the cancer is so confined.

However, the radiation alternative is often sold short by surgeons. Foremost in favor of radiation, it is generally kinder to older folks, especially those 70 and older than surgery. Second, these days, at one of the competent if not outstandingly expert teams/facilities available in NYC and New Jersey, radiation is at least as good as surgery at killing the cancer, and a reduced pelvic dose can “cleanse” the area around the prostate of any currently undetected micro metastases that may be lurking, something that is impossible for surgery. Third, it is really best to go with your best shot the first time out rather than holding radiation in reserve as a backup; that argument is often used as a selling point by surgeons, but with modern, well-done radiation, the radiation is at least as likely to be successful as the surgery first with radiation as salvage combo. Over the past year or two it is becoming standard to use far fewer radiation sessions that in the past for external beam, perhaps around 20 sessions or as few as 5, and “seeds” can be done in 1 or 2 sessions.

Are you diabetic or pre-diabetic? That could make a difference in your choice of therapy.

It's not easy making these choices. Good luck sorting this out.

 
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Old 09-12-2017, 02:56 AM   #7
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi Jim, I saw a radiation oncologist that recommended 9 weeks 5 times a week for treatment. I've had two hormone sessions. First one was 2 shots, and a month later one more. After that I decided to see a surgeon. He's the head of the Urology dept and seems very experienced in prostate surgery. I always tried to give a few hours a week to exercise, 3 to 4 times a week with resistance training and walking on most days. I've got to get clearance from my cardiologist, he'll be doing a nuclear stress test in a few days, and then to my primary for his clearance. I guess my final decision will be based on their opinions. I so much appreciate the time you take to answer my posts, and helping me to relax somewhat. This thing has been on my mind every day since the diagnosis, I'm just feeling that the surgery is my best first shot at a cure. As soon as I get the OK, hopefully, from the doctors, I'll let you know my decision. Again, thank you so much for the information, but mostly for taking the time. Pat

Last edited by Administrator; 09-12-2017 at 09:11 AM.

 
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Old 09-12-2017, 10:06 AM   #8
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Seems I violated the rules, I apologize. Won't happen again

 
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Old 09-15-2017, 10:31 AM   #9
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi again Pat,

If you are interested in trying further research on your candidate doctors, there's another step you can take that is sometimes productive: check their publication records in www.pubmed.gov, a US government website that captures papers published in medical journals all around the world, with translations of at least abstracts of the papers (if the paper has an abstract - most do) into English. Keep in mind that most doctors are too busy practicing medicine to take the time to participate in research, so many of us will not find anything, but, when we do, it can be informative. Usually leaders in the field will be involved in research papers, but many doctors who are not "leaders" are also excellent.

For instance, in your case, what you can do is type in a simple search string using the last name and first initial and middle initial (if known), all lower case, followed by " [au] ", which tells the search engine that the data is for an author. For example, picking some initials just for the example, let's say you entered " s**** md [au] " (with the quotation marks just to set off the actual string and asterisks for any number of actual letters that you would enter) as your string and got some results. Usually it helps if you check the filter on the left of the www.pubmed.gov search page for "abstracts," as you want some blue hypertext you can click on to find a description of key points of the paper. When you do that, it typically reduces the number of hits somewhat as it won't count such publications as letters to the editor that have no abstracts.

Now most doctors do not deal with prostate cancer exclusively, or even mainly, so it can help to add " AND prostate cancer " to the search string, making it look like this in the example " s**** md [au] AND prostate cancer ". Again, that will reduce the number of hits, but you narrow down the list just to papers that at least mention prostate cancer. You can add other filters and additional AND, NOT, OR and () limits as you wish, but each narrowing will likely reduce what you see, though the resulting set of hits becomes more relevant. One of the filters selects only papers where the free full text of the paper is available online, which can be interesting.

This homework can be quite informative. For example, it can give an indication, if you get any hits, how currently and over what span the doctor has been involved in research. It can also give you some feeling for the proportion of the doctor's interest in prostate cancer versus other conditions. It can indicate whether the doctor is involved in some of the more recent developments, such as multiparametric MRI and genetic screening. Also, the first listed author is almost always the quarterback for the paper, and the last listed author is usually the senior author in a "producer" type sense, so these two positions are most significant, and that too can help.

A separate key thing apart from www.pubmed.gov that you can and should do, especially with surgeons, is ask the doctor or his or her staff how many of the type of procedure you are visualizing that they have performed. For example, if you are looking for robotic surgery, you would want someone who has performed at least several hundred of those, not counting "open" or "laproscopic" prostate cancer surgeries they have done, or non-prostate cancer robotic surgeries. This is really important! Sometimes very senior urologists have only learned recently (and therefore with low-case volume) to do robotic prostatectomy, and recently minted surgeons are likely to still be learning the finer points of the technique and variations in anatomy and special challenges that patients present. More surgeries is better, as this technique has a long "learning curve" as has been established in a number of research studies. (If you wish, you can even research that learning curve on www.pubmed.gov. I have noticed that the number for best performance has kept growing to more than a thousand, but I suspect that is somewhat connected with the number of surgeries the key authors have recently completed. .)

Again, good luck!

 
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Old 09-15-2017, 01:18 PM   #10
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Jim...you're a walking encyclopedia, thank you so much for all the information. I'm going to see how far I get on the site. (not very computer savvy) I'll check back in a day or so, I've got a lot of homework. So much appreciated. Pat

 
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Old 09-15-2017, 02:01 PM   #11
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hey Jim, I see my docs name mentioned in a few publications, fairly far down the list. Wondering if there is a way to find how many robotic surgeries he's done.
Thank you,
Pat

 
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Old 09-15-2017, 02:09 PM   #12
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi Jim, disregard my prior reply, I see where you say "I've got to ask" how many procedures he's done.
Pat

 
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Old 09-15-2017, 04:07 PM   #13
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Hi again Pat,

Urologists should expect to be asked that question and should have the answer ready to offer.

Good for you for giving the search a try!

Also, the best known, largest (and very large) international education and support group network for prostate cancer is Us Too International. I'm confident that Us Too has a chapter near you, and the leaders (and meeting attendees) may well be able to tell you their experiences with the surgeon you have in mind.

Jim

Last edited by IADT3since2000; 09-15-2017 at 04:11 PM. Reason: Added information about Us Too.

 
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Old 09-17-2017, 09:48 AM   #14
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Quote:
Originally Posted by IADT3since2000 View Post
Hi again Pat,

Urologists should expect to be asked that question and should have the answer ready to offer.

Good for you for giving the search a try!

Also, the best known, largest (and very large) international education and support group network for prostate cancer is Us Too International. I'm confident that Us Too has a chapter near you, and the leaders (and meeting attendees) may well be able to tell you their experiences with the surgeon you have in mind.

Jim
Hello Jim, I've got a question if I may, a week or so back, I read a post stating the 5 questions to ask after surgery. I should have, but didn't jot them down, By any chance was it your post, if so, could you post them once more. Thank you, Pat

 
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Old 09-18-2017, 05:56 PM   #15
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Re: Requesting Opinion on My Prostate Cancer from Experienced People

Quote:
Originally Posted by patvl246 View Post
Hello Jim, I've got a question if I may, a week or so back, I read a post stating the 5 questions to ask after surgery. I should have, but didn't jot them down, By any chance was it your post, if so, could you post them once more. Thank you, Pat
Hi Pat - your question on 5 questions to ask after surgery:

That was not my post, so keep looking. Here are a few thoughts:

For right after surgery when talking to the surgeon -

- Do you think you got it all?

- Were you able to spare the nerves (if nerve sparing)?

- What is the plan for controlling pain, and when can I go home?

- Were there any surprises or circumstances that could make my recovery
more difficult than normal?

- When and how does the penile rehabilitation program start? (should be
shortly after surgery)

For a little later, after the biopsy report -

- Were the margins, any lymph nodes that you removed,and seminal
vesicles clear of cancer?

- What was the pathology report on the removed prostate? How many
tumors were there, what was their size, and what were the Gleason
grades and scores for each?

- I would like to be monitored with an ultrasensitive PSA test that is reliable
down to less than (<) 0.01 ng/mL of PSA. Can you arrange that for me or
help me get that set up?

- Questions about likely side effects if not covered already, how to cope with
them or minimize them (for example, penile rehabilitation).

- (If your case looks a bit challenging at this point What is the point at
which you would recommend follow-up radiation, and would I then need
androgen deprivation therapy?

You might also ask about lifestyle tactics (nutrition, diet, exercise, stress reduction, and some mild medications) to help lower the chance of a recurrence.

 
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