Prostate.....which way to go?

[puck2]

STEP 2

Now we are in a grey zone, detecting PC, where the docs cannot solve the problems like a mathematical equation. There are some standards for discovering and measuring PC like PSA levels, biopsies, Gleason Score, history of the family etc. . The best result normally is a combination of these standards. The medical science is not yet at that point where a doctor can tell anybody by 100 % how it will go on with your prostrate/health. What did Sheryl say? #8 -->

The PSA issue is extremely complex and reflects trade-offs between sensititivity (likelihood of finding cancer if it is there) vs. specificity (risk of false positives), and cost implications also come into play. Nobody thinks the PSA is an ideal screening tool, nor is the digital exam ideal, but currently these 2 things are all that we have. This is a good but rather technical discussion http://www.uptodate....prostate-cancer

With a normal digital exam and a PSA towards the lower end of in the "grey zone" (>4 and <10.0), about 25% of men with a PSA in this range turn out to have cancer, 75% do not. The negative digital exam probably further lows the odds by a few points but there is still about a 1 in 5 chance of cancer and, if present , it could be slow growing or it could be aggressive.

It's important fo find the right doctor or hospital. I would not like to repeat all what is written in this thread and in it's links. But one tendency is obvious. In the past, the PSA level was a welcome money source for many hospitals and doctors. It served for many unnecessary treatments including prostatectomy with sometimes horrible results for the patients. Nowadays most doctors are more careful, but not all.

To the OP:

It's a little bit confusing reading all the medical reports. Statistics, statistics ...there is no garantee that your case is a normal case within the statistics. I wouldn't hurry up for a biopsy until I reach a higher level near to 7 - 10. But I wouldn't be afraid of a biopsy. Although a biopsy cannot detect a PC by 100 % (because cancer is in a hidden area), the result gives you a safer feeling. Even if it contains some cancerous slides/samples it does'nt mean that you must have a surgery tomorrow. Only if the gradings are high - i.e. a fast growing cancer - then contact an experienced doctor.

What I miss in all these medical reports is giving a hint about the incurable (PC)-cancer and the horrible side effects of metastases, a loss of quality of life. Avoiding an icurable PC and metastases means screening in advance. When the statistics show many people with PC don't die because of the cancer but with the cancer, I'm frustated. They don't say any word or show any number about the reason of their exitus. As the PC generally is a slow growing cancer there is the possibility that they die of the metastases of the PC. This means, their real death is caused by the PC but disregarded in the statistics (?)

Detecting PC in time is another problem. Slowly growing cancer doesn't cause pain or big problems. Then it is still in the capsule with a high chance of being cured. When people suffer of pains the PC is in general out of the capsule with metastases. The chance of curing is reduced to a minimum..

Of course and that's the other side of the coin, a radiology treatment or a prostectomy can cause irreparable damage, too.

[Sceptict11]

Forgot to give this link

http://www.cancerresearchuk.org/cancer-info/spotcancerearly/screening/breastcancerscreening/breast-cancer-screening

Note !

"for every life saved from breast cancer by screening, around three women are overdiagnosed".

Some of these ladies will undergo mastectomy which is of no benefit and all will suffer some degree of psychological harm.

Nobody perfroms or undergoes mastectomy based on a mammogram result. Mammograms may lead to unnecessary biopsies (unnecessary in retrospect) but not to unnecessary mastectomies..which in any case are not nowadays the most common treatment for early breast cancer in situ.

With any screening test there is a trade-off between sensitivity (ability to detect a condition if it is there) and specificity (risk of a false negative). A screening test is just that..a tool for screening, flagging cases for further diagnostic evaluation. Screening tests are not in themselves diagnostic nor are they expected to be.

And with any screening test there will be both false negatives and false positives. If one wants to minimize the false negatives, i.e. to maximize the chance the screening will flag cases that have the problem, one has to accept an increased number of false positives. If you want to remove the possibility of false positives, you will inevitably increase the numbers of false negatives. It is generally better to err on the side of the former.

Nonetheless it is very concerning that a quite a significant percentage of both breast cancer and prostate cancer screenings are leading to unecessary interventions.

It leaves patients in a very difficult situation should they test positive.

Partial content of an email received from a Dr friend .

"A review, published last year, shows the effects of three decades of breast cancer screening in the US. During this period, the number of “early-stage” cancers more than doubled, from 112 to 234 per 100,000 women. This should have drastically reduced the number in whom the disease was diagnosed in its “late” stages, were the rationale for screening sound; but this fell by just eight per cent.

The only possible inference from this discrepancy has to be that many of those with “early stage” cancers, 70,000 every year, do not have the disease. Or, to be specific, that the interpretation of the tissue specimens obtained at biopsy is incorrect, and that they are benign rather than cancerous.

These women would none the less have undergone treatment, which leads on to the further disturbing revelation highlighted in a recent report in this paper, titled “Genetic tests could spare thousands from chemotherapy”. This confirms what many have suspected: that a substantial proportion of those in whom screening identifies a genuine cancer endure the rigours of chemotherapy to no purpose."

The same considerations apply to prostate cancer in men, where the massive upswing in the number of cases since the introduction of PSA screening has not been paralleled by a fall in mortality from the disease. It must be presumed that many gain no advantage from treatment. No doubt in time these screening programmes will adapt to take into account the profound uncertainties about their effectiveness, but for the moment, those found to have “early” cancers need to ask searching questions."

[cheeryble]

I thought I would update readers on my progress.....not because my particular case is important or drastic but because it may be informative in a subject where we men all need to be informed.

__________________

So....

In mid May I had a PSA test come out at 5.47 which my urologist said was a worrying velocity since the previous one of 4.23.....higher than the max recommended 0.7ng/ml/pa.

So he recommended testing again in three months to check if it was an anomaly.

I checked recently and it had just gone up slightly to 5.55.

So today I went to see the urologist again, but as readers know I had compiled a lot of information and was trying to make an intelligent choice and avoid getting on an unstoppable train.

So I told Dr Pisanu that I had been doing some studying.

He said and what do you think?

I said "well......the USPSTF contra-recommended PSA testing unless very suspicious for prostate cancer". He nodded.

I carried on: "....and I think I am certainly not very suspicious for PC", and I asked him if he agreed. He said that he did agree.

So, said I it seems to me that basing further testing or treatment on the test which is contra-recommended for me is not called for. He listened.

I went on:"What's more, I know I have an enlarged prostate, but I am led to believe there is no solid link between PC and BPH.......is that so?"

Dr Pisanu agreed that to the best of our knowledge it was so.

I went on again "....and I read that a quality study says the one thing PSA really is accurate at is being indicating the size....meaning the volume....of the prostate.

He nodded.

"Well, said I, if my prostate was just 50% larger dimension wise, it would mean more than a 3x rise in volume and that one could then expect a 3x rise in PSA....which would make my "real" PSA level pretty much normal.

Well Dr Pisanu started to disagree about the "more than 3x", but I pointed out that the volume varies as the cube of the diameter, and 3/2 cubed was 27/8 or 3.375.

I suggested we look at my prostate sizes over the last years and pointed out they were very scattered and actually appeared to go up then down then up again.

He very reasonably said it's very operator-dependent and also the abdominal ultrasound is somewhat inaccurate for the prostate.

So I noted that my last estimated prostate volume was 52.38cc and asked "What would an unenlarged prostate size be.

He suggested "about 20cc". '

So, said I, My prostate volume is over 2.5 times normal, therefore surely it would be reasonable to divide my PSA by 2.5 or so to get a normalised reading.

He concurred, and said actually you can calculate normality from a formula:

Divide the PSA by the volume, and the result should be under 0.15

Well mine would be 5.55/52.8 or just over 0.1.....so quite acceptable when normalised.

So where do we go from here I asked, I'd like us to come to a conclusion together we are both happy with.

He said a little about PSA really being a blunt tool, but said it does really raise flags not to be ignored when it is 20 or over, so it does have it's uses.

He suggested I go and have a nice life, and perhaps test at 6 months (though he actually wrote 3 months for the appointment.)

I am fine about this......but I wonder if in fact this period is not just arbitrary and may be based on factors that don't actually make the best sense according to new guidelines.

It may be a case of trying to be careful for safety's sake (for which I am grateful, and I actually like this doctor), but missing the point of the new guidelines that one must have a balance of care of the other alternative, overtesting and it's repercussions.

So I hope this learning process has been useful to others.

It certainly has been for me (I read about a typical American case just this morning where the guy was recently ordered a biopsy merely for having his PSA rise from 1.5 to 3.0 in a year.A biopsy has a pretty high chance of finding a histologically evident cancer, and studies show that most men then get treated, with all that entails.........but very few get helped, because most would live symptom free. BTW PSA velocity is now seen as having no predictive ability.)

Cheeryble

ps: Interestingly, he didn't give me a DRE, but there seems to be little or no data suggesting that aids outcomes either.

Edited October 17, 2013 by cheeryble

[thaiexpat21]

cheeryble

Thanks for the update.

You seem to have made a very good choice of doctor.

[cheeryble]

Welcome Thaiexpat.......

In retrospect I should have asked him to take a wild guess at if and how long before my now modest urinary symptoms get to the stage they necessitate prostate reduction treatment.

Again, not overly concerned, will take it if and as it comes, but may be worth having an idea of likely timelines.

(May well be too many variables and how long is a piece of string ha-ha but hey I can ask).

[Dr Robert]

Mr Cheeryble, I would like to express my sincere gratitude for your honesty, intelligence and candid examination of your condition. Sharing your thoughts with such clarity and the subsequent additions from medically trained moderators have made this one of the most interesting, useful and to be honest heartwarming threads I have read in here. I tip my hat to you sir. Thank you.

[cheeryble]

Mr Cheeryble, I would like to express my sincere gratitude for your honesty, intelligence and candid examination of your condition. Sharing your thoughts with such clarity and the subsequent additions from medically trained moderators have made this one of the most interesting, useful and to be honest heartwarming threads I have read in here. I tip my hat to you sir. Thank you.

Gulp....

[CPH]

Cheeryble, your writing is very thorough and interesting, but somewhere it seems you are doing everything in your power to avoid taking action on your prostate problem. The accelleration of the PSA is somewhat problematic and should be followed tight. If your PSA goes over 10 you should definately take the biopsy and possible Xray of hip and prostate area.

[uptheos]

Forgot to give this link

http://www.cancerresearchuk.org/cancer-info/spotcancerearly/screening/breastcancerscreening/breast-cancer-screening

Note !

"for every life saved from breast cancer by screening, around three women are overdiagnosed".

Some of these ladies will undergo mastectomy which is of no benefit and all will suffer some degree of psychological harm.

Nobody perfroms or undergoes mastectomy based on a mammogram result. Mammograms may lead to unnecessary biopsies (unnecessary in retrospect) but not to unnecessary mastectomies..which in any case are not nowadays the most common treatment for early breast cancer in situ.

With any screening test there is a trade-off between sensitivity (ability to detect a condition if it is there) and specificity (risk of a false negative). A screening test is just that..a tool for screening, flagging cases for further diagnostic evaluation. Screening tests are not in themselves diagnostic nor are they expected to be.

And with any screening test there will be both false negatives and false positives. If one wants to minimize the false negatives, i.e. to maximize the chance the screening will flag cases that have the problem, one has to accept an increased number of false positives. If you want to remove the possibility of false positives, you will inevitably increase the numbers of false negatives. It is generally better to err on the side of the former.

Nonetheless it is very concerning that a quite a significant percentage of both breast cancer and prostate cancer screenings are leading to unecessary interventions.

It leaves patients in a very difficult situation should they test positive.

Partial content of an email received from a Dr friend .

"A review, published last year, shows the effects of three decades of breast cancer screening in the US. During this period, the number of “early-stage” cancers more than doubled, from 112 to 234 per 100,000 women. This should have drastically reduced the number in whom the disease was diagnosed in its “late” stages, were the rationale for screening sound; but this fell by just eight per cent.

The only possible inference from this discrepancy has to be that many of those with “early stage” cancers, 70,000 every year, do not have the disease. Or, to be specific, that the interpretation of the tissue specimens obtained at biopsy is incorrect, and that they are benign rather than cancerous.

These women would none the less have undergone treatment, which leads on to the further disturbing revelation highlighted in a recent report in this paper, titled “Genetic tests could spare thousands from chemotherapy”. This confirms what many have suspected: that a substantial proportion of those in whom screening identifies a genuine cancer endure the rigours of chemotherapy to no purpose."

The same considerations apply to prostate cancer in men, where the massive upswing in the number of cases since the introduction of PSA screening has not been paralleled by a fall in mortality from the disease. It must be presumed that many gain no advantage from treatment. No doubt in time these screening programmes will adapt to take into account the profound uncertainties about their effectiveness, but for the moment, those found to have “early” cancers need to ask searching questions."

Your Dr friend must read The Telegraph.

http://www.telegraph.co.uk/health/healthadvice/10359098/Doctors-diary-the-dilemma-over-cancer-screening.html

[bannork]

I join this discussion with sadness as today the doctor confirmed I had prostate cancer. About 2 months ago I noticed I was urinating far too often and feeling the effects of urinary retention, ie I still wanted to go. I went to Vajira hospital on Samsen road as I'm only a teacher in a rather modest school, I have health insurance with Thai Prakarn Sukaparp., a big company, for inpatient care only, I noticed the limitations, ie 20,000 baht for operations etc.

Anyway, at first I had an X ray, the doctor said the prostate looked normal and told me not to wait for the blood tests as they wouldn't be available till the afternoon. He made an appointment for 4 weeks time.

Back I went 4 weeks later, to be told I had a PSA level of 60, obviously a high likelihood of cancer, this led to a biopsy of the prostate last week which confirmed it was cancer.

I realized the long gaps between appointments was because the doctor only treats people on Tuesdays, on Wednesdays he does surgery, in a private hospital the appointments would obviously be much closer.

I stayed in 2 nights, 3 days, the hospital care was excellent with attentive, efficient friendly nurses and doctors, and indeed some cheerful patients! Total cost was 6,500 baht which I can redeem in a week with my insurance.

Released last Thursday, I was fine, i e urinating okay, till Friday night, when I couldn't pass water for 9 hours. Back to the hospital, a nurse inserted a plastic tube into 'percy', surprisingly without any pain or discomfort, and I was relieved literally and figuratively, and discharged to wander the streets with the plastic tube and bag attached. I bought a bag with a long strap to hide the urinary bag and so far nobody seems to have noticed, though my first attempts at attaching the urinary bag to my leg with a tie under long trousers proved disastrous as the bag slipped whilst walking, leading me to hobble, clutching my leg as if in great pain, but really just holding the bag in place. I'll have to devise a better strap, the hospital didn't provide one.

Anyway, back to the doc today and he said next week I have to have a bone scan to see if it has spread. He said something which has left me stumped and wondering if I misheard or misunderstood him. I'm wondering if Sheryl can help. He laughed and said if the cancer has spread to the bone, it's easy to treat, Zoladex hormonal injections. Can that be right? I would have thought it was the opposite. So I asked him what was the treatment if it hasn't spread and he said wait and see the results.

The nurse asked if I had any pain in my bones and I answered honestly and said no, I felt about 25 years old, (I'm 58), I've just come back from 18 days on our farm in Issan, weeding 7 rai of land and was feeling excellent.

I'm going back to the wife's farm tonight until the bone test, better to admire the verdant green rice fields of Issan than the concrete of Bangkok.

[cheeryble]

Sorry to hear of your problem.

Not wanting to butt in between you and any questions, but there is a bit missing and it may be useful for Sheryl.

Don't quite understand why you were in hospital for three days and two nights.

Did you have a procedure done? What?

(Naturally up to you if you wish to disclose this information or any further details....it may be best left with your clinician)

Depending on these and further unknowns the coming bone scan may be only a routine safety check.

In any case warmest wishes!

Edited October 22, 2013 by cheeryble

[bannork]

Sorry to hear of your problem.

Not wanting to butt in between you and any questions, but there is a bit missing and it may be useful for Sheryl.

Don't quite understand why you were in hospital for three days and two nights.

Did you have a procedure done? What?

(Naturally up to you if you wish to disclose this information or any further details....it may be best left with your clinician)

Depending on these and further unknowns the coming bone scan may be only a routine safety check.

In any case warmest wishes!

I was in hospital for the needle biopsy, after my very high PSA, the doc said the biopsy was necessary to be definite. I had to check in the day before to be cleaned out to lower the risk of infection as the prostate is so near the back passage.

The evening before the nurse arrived wearing rubber gloves, ( I'm going to write a song called, 'She's wearing rubber gloves'), and then injected some liquid into my backside. Within a minute literally my stomach exploded and I had to rush to the loo. Some other patients laughed and applauded-' hey you made it in time!' They also started drip feeding me antibiotics the night before. The biopsy procedure was surprisingly almost 100% pain free, I'd say the dentists is worse. Humiliating of course, they strap your legs in, high in the air ( giving birth must be similar but much more painful) and he pushes through the back passage to the prostate where the machine makes a sound like a stapler- 'click,click' as he gets enough tissue for the biopsy. Only about 10 minutes on the surgery table, conscious the whole time, just a mild anesthetic round the back passage which soon wears off

Back to the ward for more antibiotics to ward off infection and I was released the next day at lunchtime.

.

.

[cheeryble]

Hi Bannork

Live and learn I was under the impression a prostate biopsy was usually an outpatient procedure.

One wonders if your urinary pressure was due to common and garden prostate enlargement or the cancer itself.

I guess your biopsy may answer that.

At any rate I hope the information on this thread has given you some useful background that cancers vary greatly and most are dealt with or lived with for a very long time. My own brother in law is coming up to about 15 or 20 years since he was diagnosed with a serious prostate cancer. Had nasty side effects for a while from radiation but went through it and doing just fine and very active indeed and still has his prostate I believe, age now 80 plus.

So best of luck to you and glad to see you haven't lost your sense of humour, because it seems to me there's no good or bad in things that happen to us, the good or bad only come with our reactions.

Cheeryble

Edited October 24, 2013 by cheeryble

[offset]

Sorry to hear of your problem.

Not wanting to butt in between you and any questions, but there is a bit missing and it may be useful for Sheryl.

Don't quite understand why you were in hospital for three days and two nights.

Did you have a procedure done? What?

(Naturally up to you if you wish to disclose this information or any further details....it may be best left with your clinician)

Depending on these and further unknowns the coming bone scan may be only a routine safety check.

In any case warmest wishes!

I was in hospital for the needle biopsy, after my very high PSA, the doc said the biopsy was necessary to be definite. I had to check in the day before to be cleaned out to lower the risk of infection as the prostate is so near the back passage.

The evening before the nurse arrived wearing rubber gloves, ( I'm going to write a song called, 'She's wearing rubber gloves'), and then injected some liquid into my backside. Within a minute literally my stomach exploded and I had to rush to the loo. Some other patients laughed and applauded-' hey you made it in time!' They also started drip feeding me antibiotics the night before. The biopsy procedure was surprisingly almost 100% pain free, I'd say the dentists is worse. Humiliating of course, they strap your legs in, high in the air ( giving birth must be similar but much more painful) and he pushes through the back passage to the prostate where the machine makes a sound like a stapler- 'click,click' as he gets enough tissue for the biopsy. Only about 10 minutes on the surgery table, conscious the whole time, just a mild anesthetic round the back passage which soon wears off

Back to the ward for more antibiotics to ward off infection and I was released the next day at lunchtime.

I had 2 biopsies both were out patient no stay over night

First one was 12 biopsy and I was awake no sign of cancer the second one was a 24 biopsy and I was put under for that one and it found cancer

.

.

[bannork]

I'm stuck with using a urinary catheter for at least 2 months and I'm wondering if anyone knows a good place to buy one in Bangkok. Vajira hospital fixed me up with one but the tube is so long, the bag reaches the floor, so tying it to my leg is a big operation involving turning the tube several times.

Does anyone know where I can get a shorter one?

cheers,

bannork.

[thaiexpat21]

I'm stuck with using a urinary catheter for at least 2 months and I'm wondering if anyone knows a good place to buy one in Bangkok. Vajira hospital fixed me up with one but the tube is so long, the bag reaches the floor, so tying it to my leg is a big operation involving turning the tube several times.

Does anyone know where I can get a shorter one?

cheers,

bannork.

The catheter is to long or is it the reservoir bag and tubing ?

Leg bags are available which would solve the problem but, I am sorry, I do not know of a suppler .

[Sheryl]

I'd try the pharmacies that are on Rajawithi Road near Victory Monument, just opposite the hospital - -they have a lot of medical supplies. There are also medical supply shops inside many of the private hospitals e.g. Bkk Christian, Bumrungrad.

What did the bone scan show? (Sorry I didn't reply earlier, I was offline for 10 days).

[Mike45]

I'm stuck with using a urinary catheter for at least 2 months and I'm wondering if anyone knows a good place to buy one in Bangkok. Vajira hospital fixed me up with one but the tube is so long, the bag reaches the floor, so tying it to my leg is a big operation involving turning the tube several times.

Does anyone know where I can get a shorter one? 

cheers,

bannork.

 

I'm confused by this. You had a simple biopsy and now have to use a catheter for two months? I'd be looking for a consult with Cheribye's doctor.

Sent from my iPad using ThaiVisa app

[cheeryble]

......to which I'd add:

Can you not just disconnect the tube with a razor knife and shorten it?

Sent from my iPad using ThaiVisa app

[ajs500]

I must confess I have not read all the posts, but have to admire the depth of research by the OP.

My twopenorth..Age 77, yo-yo between fitness freak and couch potato, and cabbage soup and eat everthing and too much.

10 years ago I had the symptons with constant night time weeing. Went to the GP. and had PSA..not good, come back in a few weeks. In the meantime I was sure I was going to die soon and worried somewhat.

Then I did a little research, and even then, the PSA was seen as very iffy.

Went back to the doc and told him that.. I did not trust the PSA, and the thoughts of traipsing back and forth for biopsies, chemo and the like was very unappealing...and that I thought it was bladder irritation, as I had started noticing the cause and effect of particular ingredients. (Since then I have read that an enlarged prostate, fluctuating in size can also cause too much weeing.)

I also read in an excellent book on the anthropology of Sex (Sex at Dawn), that the "use it or lose it" applies as much to the reproductive system as we might expect. Ernest Borgnine attributed his longevity (mid 90's I believe), to "I masturbate a lot"

I told the doc that if I did have Prostate Cancer. I would pull the plug. He seemed to recognise I was serious and said, "well I would help you with the pain meanwhile"

So 10 years on I'm still alive and have very occasional bouts of weeing too much, my "bad back" is more of an issue though.

So I guess it's up to the individual,if I were in my fifties with responsibilities, it may be different, but been there done that, won't be missed I'm sticking to my plan.Particularly after meeting a guy who had the op and kept telling me about 2 months in diapers etc.

I am considering Dignitas, US$10,000 exit..funniest thing when I told a pal he said "Why waste that money !"

Edited November 6, 2013 by ajs500

[cheeryble]

I must confess I have not read all the posts, but have to admire the depth of research by the OP.

I think it time well spent ajs.

This really is an issue that affects so many.

In coffee shop discussions with friends I find that few or none know what I'd now call essential information which of course I myself didn't know just months ago.

Of our group of four yesterday one has had his prostate out, one has in-range PSA, one does not get medicals, and myself you now know about.

Very relevant was when another friend visited last week.

He has a PSA of 15 and 1/2.

I gave him some background, none of which he knew I might add, but pointed out that he was getting into the range my urologist was pointing to when he agreed with me that PSA is a blunt tool and benign enlargement also raises PSA, but that "you cannot ignore when you get a PSA of, say, 20."

I think this friend, 72, is a highly (over?) skeptical health freak, but this was a case where I had to say "I would seriously consider asking a urologist about a biopsy." ......whilst assuring him at the same time that this was absolutely not a death sentence.

To be clear, the diapers are unlikely to apply to a mere biopsy.

I also read in an excellent book on the anthropology of Sex (Sex at Dawn),

.......indeed a wonderful book.....

Particularly after meeting a guy who had the op and kept telling me about 2 months in diapers etc.

…….to be clear you are very unlikely to need diapers for a biopsy.

Ernest Borgnine attributed his longevity (mid 90's I believe), to "I masturbate a lot"

Well let's hope you "help yourself" to 120!

BTW: You'll be missed by us.

Edited November 6, 2013 by cheeryble

[Sheryl]

Indeed a biopsy will not cause incontinence, but I think the "op" he refers to was not a biopsy but rather a prostatectomy, which sometimes does.

The catheter another poster is dependent on is likely because of urinary retention due to a very enlarged prostate. He urgently needs to get proper treatment, prolonged use of an indwelling catheter in addition to being awkward carries a high risk of urinary infection and even sepsis. Plus he is only in his 50's so aggressive treatment of cancer if present is indicated.

[bannork]

Indeed a biopsy will not cause incontinence, but I think the "op" he refers to was not a biopsy but rather a prostatectomy, which sometimes does.

The catheter another poster is dependent on is likely because of urinary retention due to a very enlarged prostate. He urgently needs to get proper treatment, prolonged use of an indwelling catheter in addition to being awkward carries a high risk of urinary infection and even sepsis. Plus he is only in his 50's so aggressive treatment of cancer if present is indicated.

I think you're referring to me Sheryl in your second sentence. My bone scan showed the cancer hadn't moved out of the prostate 'area' , but the Gleason score of 4+3=7 means my cancer is aggressive.

I was having urinary problems but I could still 'go', however 2 days after the biopsy which confirmed cancer I couldn't go at all, the doctor ( this is Vajira hospital) said inflammation of the prostate was blocking the urethra, now 3 weeks later he's saying it's the cancerous growth blocking the flow.

I noticed he proscribed pills to counter infection.

He said there were 3 choices- hormone treatment, surgery and radiation.Hormone therapy was not enough as my cancer was too aggressive so he recommended a small operation in January involving 2 cameras. The drawbacks were loss of a lot of blood, cancer may still be present around the prostate and possibly incontinence afterwards

He didn't like radiation as he it was too blanket but he said with modern techniques it can be more precise. This led me to wonder if they didn't have that precise enough equipment in the hospital. Vajira's a big hospital and a training one so they do have a lot of equipment but little time for each patient.

Your comments about infection and sepsis worry me as I was under the impression I would just carry on using the catheter until the operation - no choice!

[cheeryble]

If it's any consolation Bannork you have main grade moderate and secondary grade slow:

http://prostatecanceruk.org/information/prostate-cancer/getting-the-results

What the Gleason score means:

3+3 - All of the cancer cells found in the biopsy look likely to grow slowly.

3+4 - Most of the cancer cells found in the biopsy look likely to grow slowly. There were some cancer cells that look more likely to grow at a more moderate rate.

4+3 - Most of the cancer cells found in the biopsy look likely to grow at a moderate rate. There were some cancer cells that look likely to grow slowly.

4+4 - All of the cancer cells found in the biopsy look likely to grow at a moderately quick rate.

4+5 - Most of the cancer cells found in the biopsy look likely to grow at a moderately quick rate. There were some cancer cells that are likely to grow more quickly.

5+4 - Most of the cancer cells found in the biopsy look likely to grow quickly.

5+5 - All of the cancer cells found in the biopsy look likely to grow quickly.

Do you know if the willingness to wait for January is because your doctor is relaxed about your case or that he is simply not book able before then?

Edited November 6, 2013 by cheeryble

[Sheryl]

Indeed a biopsy will not cause incontinence, but I think the "op" he refers to was not a biopsy but rather a prostatectomy, which sometimes does.

The catheter another poster is dependent on is likely because of urinary retention due to a very enlarged prostate. He urgently needs to get proper treatment, prolonged use of an indwelling catheter in addition to being awkward carries a high risk of urinary infection and even sepsis. Plus he is only in his 50's so aggressive treatment of cancer if present is indicated.

I think you're referring to me Sheryl in your second sentence. My bone scan showed the cancer hadn't moved out of the prostate 'area' , but the Gleason score of 4+3=7 means my cancer is aggressive.

I was having urinary problems but I could still 'go', however 2 days after the biopsy which confirmed cancer I couldn't go at all, the doctor ( this is Vajira hospital) said inflammation of the prostate was blocking the urethra, now 3 weeks later he's saying it's the cancerous growth blocking the flow.

I noticed he proscribed pills to counter infection.

He said there were 3 choices- hormone treatment, surgery and radiation.Hormone therapy was not enough as my cancer was too aggressive so he recommended a small operation in January involving 2 cameras. The drawbacks were loss of a lot of blood, cancer may still be present around the prostate and possibly incontinence afterwards

He didn't like radiation as he it was too blanket but he said with modern techniques it can be more precise. This led me to wonder if they didn't have that precise enough equipment in the hospital. Vajira's a big hospital and a training one so they do have a lot of equipment but little time for each patient.

Your comments about infection and sepsis worry me as I was under the impression I would just carry on using the catheter until the operation - no choice!

It is good news that the bone scan was negative. What did the biopsy show re lymph nodes?

Clinically, what you describe is an aggressive cancer and the sooner treatment is begun, the better. Also, there are risks of infection in keeping a catheter in for long.

There are very precise forms of radiation therapy for prostate cancer and it is a good option for some patients...google "bracytherapy". But it is possible Vajira doesn't have the capacity for this. Siriraj and Chulalonghorn definitely would though. In addition, if surgery is chosen, there are a variety of techniques, some of them less likely to create problems with incontinence than others, but again not all hospitals can offer the "nerve sparing" approach.

I think it would be worth getting a second opinion on best treatment if you can get the biopsy report and other relevant test results to bring with you. Suggest either Dr. Thanoo at Samitivej or Dr. Viroj Chadchoy at Bumrungrad. I know you cannot afford treatment at either iof these hospitals but a simple consult would be well worth the money (probably about 1,000 baht or so) to have someone spend a reasonable amount of time explaining the various options to you.

If after consultation you decide you want to try an approach not available at Vajira, these docs could probably advise you whom to see at Chula or Siriraj.

[bannork]

Indeed a biopsy will not cause incontinence, but I think the "op" he refers to was not a biopsy but rather a prostatectomy, which sometimes does.

The catheter another poster is dependent on is likely because of urinary retention due to a very enlarged prostate. He urgently needs to get proper treatment, prolonged use of an indwelling catheter in addition to being awkward carries a high risk of urinary infection and even sepsis. Plus he is only in his 50's so aggressive treatment of cancer if present is indicated.

I think you're referring to me Sheryl in your second sentence. My bone scan showed the cancer hadn't moved out of the prostate 'area' , but the Gleason score of 4+3=7 means my cancer is aggressive.

I was having urinary problems but I could still 'go', however 2 days after the biopsy which confirmed cancer I couldn't go at all, the doctor ( this is Vajira hospital) said inflammation of the prostate was blocking the urethra, now 3 weeks later he's saying it's the cancerous growth blocking the flow.

I noticed he proscribed pills to counter infection.

He said there were 3 choices- hormone treatment, surgery and radiation.Hormone therapy was not enough as my cancer was too aggressive so he recommended a small operation in January involving 2 cameras. The drawbacks were loss of a lot of blood, cancer may still be present around the prostate and possibly incontinence afterwards

He didn't like radiation as he it was too blanket but he said with modern techniques it can be more precise. This led me to wonder if they didn't have that precise enough equipment in the hospital. Vajira's a big hospital and a training one so they do have a lot of equipment but little time for each patient.

Your comments about infection and sepsis worry me as I was under the impression I would just carry on using the catheter until the operation - no choice!

It is good news that the bone scan was negative. What did the biopsy show re lymph nodes?

Clinically, what you describe is an aggressive cancer and the sooner treatment is begun, the better. Also, there are risks of infection in keeping a catheter in for long.

There are very precise forms of radiation therapy for prostate cancer and it is a good option for some patients...google "bracytherapy". But it is possible Vajira doesn't have the capacity for this. Siriraj and Chulalonghorn definitely would though. In addition, if surgery is chosen, there are a variety of techniques, some of them less likely to create problems with incontinence than others, but again not all hospitals can offer the "nerve sparing" approach.

I think it would be worth getting a second opinion on best treatment if you can get the biopsy report and other relevant test results to bring with you. Suggest either Dr. Thanoo at Samitivej or Dr. Viroj Chadchoy at Bumrungrad. I know you cannot afford treatment at either iof these hospitals but a simple consult would be well worth the money (probably about 1,000 baht or so) to have someone spend a reasonable amount of time explaining the various options to you.

If after consultation you decide you want to try an approach not available at Vajira, these docs could probably advise you whom to see at Chula or Siriraj.

Sheryl, thank you so much for that informative advice, i'll act on it tomorrow.

[henrylao]

Hi, a few years ago when I just had turned 46 I was diagnosed with Prostate cancer, original gleason 3+3 (though biopsy), I was diognosed in early October and used October and November to make a decision (also used this forum), in the end I decided to go for robotic (DaVinci) surgey back home in Europe. For me the decision was easy with 46 years the chance that the cancer would have grown and spread in the next twenty years was high. I went for robotic surgey as at that time it was the most advanced form of surgery at that time and I went back to Europe as surgeons there have so much more experience (and the costs was almost the same). In the end I tested for 3+4, lost one of my nerves regulating my erection, but I now live a life without fear of this bastard growing in me and eventually spreading. With Viagra my sex live is back to normal and I would advise anyone else in my situation and my age to go for surgey as well (can't advise on newer treatments like ultrasound). henrylao

[thaibeachlovers]

I had my prostate out in 2006 when I was under age 60 ( how unlucky is that? ).

I had done watch and see for about 3 years prior to the operation, and they did the op just as the cancer was about to break through the capsule ( determined post op ) so I would have died before now, had I not had the op.

I only went to the Dr about it because my enlarged prostate restricted my urination. Other than that I had no symptoms, and I only had the op when the urination became too difficult.

Post op, I can have sex with the aid of Cialis, but not as satisfactory as before. Presently, I have lost my sex drive, possibly because of loss of hormones due to non production of sperm ( that's what the surgeon told me would happen to my testicles ). The GP was unable to find a cause by blood tests some years ago, and I haven't bothered since.

Given what happened to me post op ( completely routine operation ) there is NO WAY I'd recommend it to any man, unless he wanted to live for his family. I had every complication possible, less infection, became suicidal, depressed and generally do not enjoy my life because of it.

I also had to have an additional op to open up the urinary restriction ( where they joined the urethra together ) and then self catheterise myself weekly for over 4 years to stop the restriction returning and preventing me from peeing properly, and I have permanent mild urinary incontinence.

Had I known what I know now, I would have had a TURP to allow me to pee freely, and taken all my money to Thailand where I would have lived an enjoyable life till I died.

Sometimes, just living isn't worth it.

[cheeryble]

Wow henrylao and thaibeachlover

this is really like the two ends of the spectrum of results.

henrylao:

Did you by any chance get your surgery done at the Royal Marsden or UCH in London?

They really have the most cutting edge oncology the da Vinci there is almost like the low-tech end of their therapeutic range.

I already knew they did the highly successful test on HIFU which could possibly revolutionise prostate treatment in just a few years in and out in more senses than one.

A BBC documentary showed their high intensity high accuracy radiotherapy robot which adjusts for the slightest movements of the body from breathing etc to allow much more powerful narrower beams from more multiple angles, also a revolutionary highly efficacious new drug against melanoma metastasis, and indeed the da Vinci machine.

thakbeachlover:

Sympathise enormously!

Interested to know more about the hormone thing which I don't really understand…..could you elucidate?

Also, you realise Testosterone has a big effect on mood (and lots else)?

Low level may be evident in your last sentence.

Has your physician considered Testosterone replacement or is he purposely keeping your T levels down?

T can have dramatic effects on how you feel, fast.

Cheeryble

____________________________________________

ps: as this thread is now largely for informational purposes I include the HIFU results:

The researchers included 41 men in their final analyses as one man died of unrelated causes three months after focal therapy. Of these, 30 (73%) had intermediate and high-risk disease.

The main findings following treatment with HIFU were:

• At six months, 30 of 39 men who had a biopsy (77%, 95%confidence interval 61 to 89) showed no evidence of cancer and 36 men (92%, 95% confidence interval 79 to 98) were free of clinically significant cancer.
• At 12 months, after treatment was repeated in four men, 39 of 41 (95%, 95% confidence interval 83 to 99) had no evidence of disease on an MRI scan.
• At 12 months, of 35 men who had no erection problems at the start of the study, 31 (89%, 95% confidence interval 73 to 97) had erections sufficient for penetration.
• Of 38 men who had no urinary incontinence at the start of the study, all were leak-free and pad-free at nine months. Of 40 men who did not use pads at the start, all were pad-free by three months and maintained pad-free continence at 12 months.

Edited December 7, 2013 by cheeryble

[henrylao]

Hi

I had my op done in Germany at a clinic of University of Heidelberg in the city of Mannheim. I went there because I got a lot of recommendations for it in a online self help forum. I compared the prices and experience here in Thailand, Australia and in Germany and it was a easy decision for me.

I am very sorry to hear the horrible experience thaibeachlover has to go through.

Cheers

henry